Today, I had a meeting with both my breast and plastic surgeons. I would love to know what their combined IQ is - seriously. The purpose of the meeting was to get "on the same page" regarding my surgery. Really, it was them talking, me shaking my head, and suggesting I just pull down my dress so they can touch the boob in all their glory while discussing incisions, etc. ... which I did.
In any event, Dr. Chiantella confirmed that there is no scar tissue evident in my MRI, which is amazing. She will remove the tissue around the area where the tumor started ("ground zero") and send to pathology for residual cancer cell and receptor testing. If residual cells are found then the radiation will take care of it. Regardless of positive or negative residual cell results, I will have radiation as a precaution. The receptor testing was Dr. Heyer's suggestion. He wants to know if there are positive receptors for maintenance drug purposes, since I currently don't have a maintenance drug to take with triple negative breast cancer.
Dr. Heyer and I discussed a low dosage of chemotherapy post radiation, which I am not opposed to. I can't recall if I discussed this on my blog or not, but he was thinking of giving me just one drug, Taxotere and a lower dosage than previously administered. My 18-week chemotherapy cocktail consisted of Taxotere and Carboplatin every three weeks. For maintenance purposes, I would get only Taxotere once a week for three weeks then one week off. The administering of Taxotere is not limited as in some other chemotherapy drugs. This means, you can only get so much of a drug and then need to start on something else, because your body becomes immune to it. As far as side effects, the biggest complaint is discolored nails and, of course, mental and psychological wear. Fatigue is hard to gauge. Of course, everyone is different but he said it's mostly your mind set. You just need to be positive and have a good mindset. Now, chemo maintenance is not a definite. He wants to know the MRI and pathology results first before making a decision. So, at this point the MRI results are outstanding and now praying for a good pathology report.
Now, the discussion today focused on what exactly they are going to do and if I would need some type of plastic surgery. They expect the removal of tissue to be small, so it may not have a significant scar where I would need plastic surgery. This all depends on where Dr. Chiantella needs to cut, how much, and if the area where the tissue is removed heals correctly. A breast indention is possible. If this happens then it would be in the future that I would have fat from another part of my body removed and placed on the indention. Also, I may need a lift on the right breast since once a breast is subject to radiation it usually tightens and draws up. So, for purely cosmetic and symmetrical purposes, they will lift and maybe minimize the right breast. Again, this is a year or so down the road.
Tomorrow at 9:30 a.m. I will have a wire inserted in the breast which will help guide the surgeon to "ground zero" where she will just carve out a piece of the surrounding tissue. She is going to feel my lymph nodes for sizing. My tumor began in the back on the chest wall, so if you are looking directly at me then to the side of my aureola all the way back then that is the starting point of all this. As you can imagine, the tumor was big since I could see it bulging from the top of my breast. Once that procedure is done, they escort me to the outpatient surgical center where I will get prepped for surgery. They will draw a bunch of lines on me (I really didn't understand all that talk, so I sat there and just shook my head while remaining topless and listened to them). I do know that sometimes what's inside could be different then what shows on the MRI, so that will be indicative of how much she removes. I will be in recovery for a couple hours and then go home.
I apologized in advance for what I say or do since I will be given some crazy drugs. It appears I am pretty funny when I am high since during my mediport surgery I put on quite a show for Kwiatek and Amy which I remember none of. I talked about Michael Jackson's milk. I do recall waking up and asking them "When are we getting this show on the road, people?" I was oblivious because the "show" already took place. I remember nothing else. Dr. Gottlieb assured me that anything I say or do will be kept a secret ;)
Post surgery, I have four weeks to heal then radiation begins. I have no idea how long radiation will last, but will know in the next few weeks. Probably six weeks, every day.
So ... keep me in your prayers and either myself or Kwiatek will keep everyone updated.
Lots of Love and Light,
Jenn
Wednesday, June 27, 2012
Monday, June 25, 2012
MRI Results...
I had my MRI this am and everything went off without a hitch, except for my "deep breathing" during the scan which caused a little delay (Note - don't deep breathe during the scan because the technician will think you are extremely fatigued and then you will have to do the whole sequence over - ooppss). I received 3 cds' and a promise from the technician that I would receive a call within the next 24-48 hours when my report is ready. I explained my surgery was Thursday, so my Drs' were quite anxious to get the results (ok.ok. I was probably just as anxious if not moreso than the Drs'.) The tech explained Dr Chiantella is usually hard on them and they will expedite the review and if it's not quick enough then she, Dr Chiantella, will access the system herself (I knew I loved this woman).
I received a call about 4:15.
Chiantella: Jennifer, your results are negative
Jennifer: What do you mean negative? Oh crap, did I mess up the scans from my deep breathing?
Chiantella: ummm...noooo....It's negative. Normal.
Jennifer: Really? Like Normal?
Chiantella: Well, I haven't seen them yet and am anxious to see this myself, but your left breast is completely normal.
Jennifer: What about my lymph nodes?
Chiantella: Normal, too.
Jennifer: Wow..I don't know what to say
Chaintella: How about ecstatically happy because I am ecstatically happy for you.
Jennifer: Oh I am ecstatically happy, don't get me wrong!
Chiantella: (laughing) Jennifer, you really kicked some cancer butt
Jennifer: I did, didn't I?
Chiantella: So, we are good to go with the lumpectomy followed by radiation. The only glitch which isn't a glitch is that I need the radiologist to insert a wire into your breast that will help me navigate to the tissue surrounding your marker when I do the lumpectomy. I hope to have an answer by tomorrow when you can be scheduled, but your surgery is still on for Thursday as of right now. In the future, if the cancer would return to the breast which I don't foresee this happening then we will do extensive surgery, but right now this is all you need.
Jennifer: Ok. Sounds good. Well what about antibiotics..special soap?
Chiantella: Nothing. You don't have to do any of that. You will be in the recovery room for about 2 hours after surgery and then you can go home.
Jennifer: Wow. Ok...Are you sure?
Chiantella: Yep. Positive.
This was the jist of our conversation. I know..it's crazy. I am sooo thankful, blessed, grateful. I can go on and on and on. It all seems so unreal.
I will wait to hear from Dr Chiantella and crossing my fingers the surgery will be set for Thursday. I will have radiation 4 weeks from Thursday. Right now, It's set for 6 weeks but I have yet to speak to the radiation oncologist (I actually have not met either, but both have already been studying my case). Dr Heyer mentioned a PET before radiation began, as well.
I will continue to keep everyone updated on surgery. I thank each and every one of you for the continued thoughts and prayers. Miracles do happen, I just never imagined it could happen to me.
God Bless.
I received a call about 4:15.
Chiantella: Jennifer, your results are negative
Jennifer: What do you mean negative? Oh crap, did I mess up the scans from my deep breathing?
Chiantella: ummm...noooo....It's negative. Normal.
Jennifer: Really? Like Normal?
Chiantella: Well, I haven't seen them yet and am anxious to see this myself, but your left breast is completely normal.
Jennifer: What about my lymph nodes?
Chiantella: Normal, too.
Jennifer: Wow..I don't know what to say
Chaintella: How about ecstatically happy because I am ecstatically happy for you.
Jennifer: Oh I am ecstatically happy, don't get me wrong!
Chiantella: (laughing) Jennifer, you really kicked some cancer butt
Jennifer: I did, didn't I?
Chiantella: So, we are good to go with the lumpectomy followed by radiation. The only glitch which isn't a glitch is that I need the radiologist to insert a wire into your breast that will help me navigate to the tissue surrounding your marker when I do the lumpectomy. I hope to have an answer by tomorrow when you can be scheduled, but your surgery is still on for Thursday as of right now. In the future, if the cancer would return to the breast which I don't foresee this happening then we will do extensive surgery, but right now this is all you need.
Jennifer: Ok. Sounds good. Well what about antibiotics..special soap?
Chiantella: Nothing. You don't have to do any of that. You will be in the recovery room for about 2 hours after surgery and then you can go home.
Jennifer: Wow. Ok...Are you sure?
Chiantella: Yep. Positive.
This was the jist of our conversation. I know..it's crazy. I am sooo thankful, blessed, grateful. I can go on and on and on. It all seems so unreal.
I will wait to hear from Dr Chiantella and crossing my fingers the surgery will be set for Thursday. I will have radiation 4 weeks from Thursday. Right now, It's set for 6 weeks but I have yet to speak to the radiation oncologist (I actually have not met either, but both have already been studying my case). Dr Heyer mentioned a PET before radiation began, as well.
I will continue to keep everyone updated on surgery. I thank each and every one of you for the continued thoughts and prayers. Miracles do happen, I just never imagined it could happen to me.
God Bless.
Sunday, June 24, 2012
MRI Scheduled
Hi Everyone,
A quick update - my MRI is scheduled for tomorrow morning. Dr Chinatella ordered the MRI to confirm if she can do a lumpectomy based on my tissue and to take a look at my lymph nodes. I would imagine she will review the images asap since my surgery is scheduled for Thursday unless they need to postpone...I will keep everyone updated. Please keep praying.
A quick update - my MRI is scheduled for tomorrow morning. Dr Chinatella ordered the MRI to confirm if she can do a lumpectomy based on my tissue and to take a look at my lymph nodes. I would imagine she will review the images asap since my surgery is scheduled for Thursday unless they need to postpone...I will keep everyone updated. Please keep praying.
Wednesday, June 20, 2012
The Decision
The past few weeks I have had a heavy heart and mind as I struggled to make a decision - unilateral or bilateral mastectomy. Normally, it's not difficult for me to make a decision, but I struggled and struggled...I prayed to God that he would give me an answer, give me a sign on what to do, or reassurance I will make the right decision as either option just didn't feel "right". I had decided to get a second opinion from an oncologist as I only wanted to understand better where Heyer was coming from. It is NOT that I did not trust him because I do, but I just simply needed more reassurance. I have connections with Dr. Sandy Swain, but she was unavailable to talk to me as she is traveling the world for her new position. I was referred to another office. I received a call quickly, but from a very rude woman. The conversation pretty much went like this:
Lady - "Can I speak to Jennifer Campbell this is __ calling from __ office"
Me - "This is she"
Lady - "First of all, what insurance do you have?"
Me - "Blue Cross Blue Shield"
Lady - "Second of all, we do not make an appointment without having your records on file."
Me - "Well, I can have my records within in a few days. Can I please make an appointment as my surgery is the 28th"
Lady - "NO, absolutely not"
Me - "Well, how long can I get an appointment once you receive my records?"
Lady - "It depends on when I receive your records"
Me - "Ok. Well, what if you get my records on Monday. How soon?"
Lady - "We are looking at the end of June"
Me - "Seriously? That doesn't really help me"
Lady - "Well, that is our procedure"
I just pretty much hang up.
I receive a call this Monday from the surgeons office asking where I need my records sent and I explained that I can't get an appointment. I tried to ask the girl if it's possible Dr Chiantella can speak to a fellow oncologist about my situation and get his/her opinion. The girl could not understand what I was trying to ask...She asks me to hold on and then then Dr Chiantella gets on the phone. I quickly asked her if it's possible and she said - it's a good idea but she can get me into another office. I thanked her and immediately called her referral and could not get an appointment until next Wednesday (day before my surgery). On Tuesday morning, I receive a call from Dr Chiantella asking if my ears were burning. I explained no because in a half hour I am scheduled to see Dr Heyer and am focused on getting through that appointment. She proceeded to tell me that she had a Breast Board Meeting that morning with the following individuals (I think I have to the ratio correct):
2 Oncologists (Not Heyer)
3 Radiation Oncologists
1 Radiologist
3 Breast Surgeons
2 Pathologists
1 Plastic Surgeon
She brought up my situation and said it was "A VERY lively discussion, but they ALL came to a consensus. Drumroll please....
Lumpectomy with Radiation
I know...I know...I know...I was like - wtf. Are you serious? However, believe it or not I got a sense of peace when she told me. I really can't explain it, but I decided to keep quiet and hear her out.
A lumpectomy with radiation has pretty much the same statistical reoccurance rate as a unilateral mastectomy, but a lot less invasive, risks, and recovery. According to Dr Chiantella, they are evolutionizing this treatment plan because there is none set in place but to feel safe knowing there was much thought put into this decision factored by very brilliant doctors specializing in all fields related to my case. They will not remove my lymph nodes since radiation will kill any residual cancer cells, but they will remove and test my breast tissue for residual cancer cells. First, I need a MRI so she can study my breast and analyze my tissue, margins, and lymph nodes. Hopefully, the MRI will reflect what she "wants" to see and there would be no issues in proceeding with this plan. I simply said "ok". I think this shocked her and honestly it shocked me - I couldn't believe I just said "ok - sounds good". I obviously had many questions which she answered. Once we hung up she was going to call Dr Heyer to explain before my appt at 9:15.
9:15am - Well, it was actually like 9:30 because I got stuff in traffic. You have to love NOVA traffic - ugh!
Kwiatek accompanied me to my visit to take notes and more importantly catch me if I really do faint or have a class act meltdown. Dr Heyer entered the room and immediately asked if I spoke to Dr Chiantella and I said, "Yes" and asked "What do you think?". I held my breath and crossed my fingers - he agreed. I thanked the Lord above.
We had a great appointment. He pretty much apologized for the scaring the living crap out of me a few weeks ago because that was not his intention - it was supposed to be a good appointment, but he knew it was not going so well by my reaction (I'm really not sure what gave it away).
Anyhow, Kwiatek and I bombarded him with questions and he answered every single one of them without hesitation. I explained my uneasiness about not removing the other breast and he explained -
1) Removing the other breast does not increase life span
2) It's usually an emotional decision than a medical decision because the woman just wants it to be done with and behind her
3) Cosmetic
My risk of developing cancer in the other breast is low, but he told me since I will be monitered very closely that if something did pop up then it can be taken care of quickly. Ok - well that makes sense...never thought about that.
He emphasized that his job is to think of the worst..not saying it is going to happen but he has to think that way. I truly understand this reasoning, but it still doesn't make it any easier to hear it.
I brought up the idea of low dosage chemotherapy and told him I will do it. He replied that he didn't even confirm I needed it. I told him it's ok - just give it to me. I would feel better. He didn't agree. What he means by low dosage of chemotherapy is this..
When someone receives chemo for treatment then usually it's more than one type of chemotherapy. For example, I had taxotere and carboplatin. He was thinking that it would be wise and the right choice to give me taxotere as a maintenance drug. It would be weekly for 3 weeks and then 1 week off. I ask - what are the side effects he briefly spoke about. He said with taxotere it's primarily ugly nails. Maybe fatigue but that is hard to gauge. It does not affect my hair follicles, so I will still have hair. Really the issue is it wears people down - mentally. I ask how will he ever know if I am in remission and he said that I am in remission, now and it very well could stay like this but again - he nor anyone else could say for certain. He told me that we aren't at the point yet to discuss a low dosage of chemo because he wants to know my MRI results and then pathology report because all this will determine next steps.
We left this time laughing - I apologized for overreacting, but I was a woman and it's expected we get all emotional. He should understand. He agreed and said men are so much easier to deal with because they just nod their head and pretty much agree with anything.
At this point, I am waiting on my MRI to be scheduled. Dr Chiantella needs to speak to my insurance company. Hopefully, it's this week to allow her time to review and analyze before surgery next week. I did have Laurie, breast care nurse navigator, from the hospital call me on Tuesday to just talk and let me know she was in the meeting that morning to which she said was one of the more interesting meetings ever. I should be at ease knowing all agreed and had my best interest at heart. She said a lumpectomy doesn't require an overnight stay and a lot of people do great the day after. I would probably only have 1 - 2 weeks recovery time. I admittedly was looking forward to 6 weeks off from work only because I had a lot planned during my down time, but hell - I am NOT complaining.
In summary, I'm assuming my intuition was leading me down the right path all along. I was struggling with a decision because maybe I knew or God was telling me there is a better plan. If I weren't persistent and stubborn then I would still be making myself sick with worry and undecided.
I'll keep everyone updated :)
Lady - "Can I speak to Jennifer Campbell this is __ calling from __ office"
Me - "This is she"
Lady - "First of all, what insurance do you have?"
Me - "Blue Cross Blue Shield"
Lady - "Second of all, we do not make an appointment without having your records on file."
Me - "Well, I can have my records within in a few days. Can I please make an appointment as my surgery is the 28th"
Lady - "NO, absolutely not"
Me - "Well, how long can I get an appointment once you receive my records?"
Lady - "It depends on when I receive your records"
Me - "Ok. Well, what if you get my records on Monday. How soon?"
Lady - "We are looking at the end of June"
Me - "Seriously? That doesn't really help me"
Lady - "Well, that is our procedure"
I just pretty much hang up.
I receive a call this Monday from the surgeons office asking where I need my records sent and I explained that I can't get an appointment. I tried to ask the girl if it's possible Dr Chiantella can speak to a fellow oncologist about my situation and get his/her opinion. The girl could not understand what I was trying to ask...She asks me to hold on and then then Dr Chiantella gets on the phone. I quickly asked her if it's possible and she said - it's a good idea but she can get me into another office. I thanked her and immediately called her referral and could not get an appointment until next Wednesday (day before my surgery). On Tuesday morning, I receive a call from Dr Chiantella asking if my ears were burning. I explained no because in a half hour I am scheduled to see Dr Heyer and am focused on getting through that appointment. She proceeded to tell me that she had a Breast Board Meeting that morning with the following individuals (I think I have to the ratio correct):
2 Oncologists (Not Heyer)
3 Radiation Oncologists
1 Radiologist
3 Breast Surgeons
2 Pathologists
1 Plastic Surgeon
She brought up my situation and said it was "A VERY lively discussion, but they ALL came to a consensus. Drumroll please....
Lumpectomy with Radiation
I know...I know...I know...I was like - wtf. Are you serious? However, believe it or not I got a sense of peace when she told me. I really can't explain it, but I decided to keep quiet and hear her out.
A lumpectomy with radiation has pretty much the same statistical reoccurance rate as a unilateral mastectomy, but a lot less invasive, risks, and recovery. According to Dr Chiantella, they are evolutionizing this treatment plan because there is none set in place but to feel safe knowing there was much thought put into this decision factored by very brilliant doctors specializing in all fields related to my case. They will not remove my lymph nodes since radiation will kill any residual cancer cells, but they will remove and test my breast tissue for residual cancer cells. First, I need a MRI so she can study my breast and analyze my tissue, margins, and lymph nodes. Hopefully, the MRI will reflect what she "wants" to see and there would be no issues in proceeding with this plan. I simply said "ok". I think this shocked her and honestly it shocked me - I couldn't believe I just said "ok - sounds good". I obviously had many questions which she answered. Once we hung up she was going to call Dr Heyer to explain before my appt at 9:15.
9:15am - Well, it was actually like 9:30 because I got stuff in traffic. You have to love NOVA traffic - ugh!
Kwiatek accompanied me to my visit to take notes and more importantly catch me if I really do faint or have a class act meltdown. Dr Heyer entered the room and immediately asked if I spoke to Dr Chiantella and I said, "Yes" and asked "What do you think?". I held my breath and crossed my fingers - he agreed. I thanked the Lord above.
We had a great appointment. He pretty much apologized for the scaring the living crap out of me a few weeks ago because that was not his intention - it was supposed to be a good appointment, but he knew it was not going so well by my reaction (I'm really not sure what gave it away).
Anyhow, Kwiatek and I bombarded him with questions and he answered every single one of them without hesitation. I explained my uneasiness about not removing the other breast and he explained -
1) Removing the other breast does not increase life span
2) It's usually an emotional decision than a medical decision because the woman just wants it to be done with and behind her
3) Cosmetic
My risk of developing cancer in the other breast is low, but he told me since I will be monitered very closely that if something did pop up then it can be taken care of quickly. Ok - well that makes sense...never thought about that.
He emphasized that his job is to think of the worst..not saying it is going to happen but he has to think that way. I truly understand this reasoning, but it still doesn't make it any easier to hear it.
I brought up the idea of low dosage chemotherapy and told him I will do it. He replied that he didn't even confirm I needed it. I told him it's ok - just give it to me. I would feel better. He didn't agree. What he means by low dosage of chemotherapy is this..
When someone receives chemo for treatment then usually it's more than one type of chemotherapy. For example, I had taxotere and carboplatin. He was thinking that it would be wise and the right choice to give me taxotere as a maintenance drug. It would be weekly for 3 weeks and then 1 week off. I ask - what are the side effects he briefly spoke about. He said with taxotere it's primarily ugly nails. Maybe fatigue but that is hard to gauge. It does not affect my hair follicles, so I will still have hair. Really the issue is it wears people down - mentally. I ask how will he ever know if I am in remission and he said that I am in remission, now and it very well could stay like this but again - he nor anyone else could say for certain. He told me that we aren't at the point yet to discuss a low dosage of chemo because he wants to know my MRI results and then pathology report because all this will determine next steps.
We left this time laughing - I apologized for overreacting, but I was a woman and it's expected we get all emotional. He should understand. He agreed and said men are so much easier to deal with because they just nod their head and pretty much agree with anything.
At this point, I am waiting on my MRI to be scheduled. Dr Chiantella needs to speak to my insurance company. Hopefully, it's this week to allow her time to review and analyze before surgery next week. I did have Laurie, breast care nurse navigator, from the hospital call me on Tuesday to just talk and let me know she was in the meeting that morning to which she said was one of the more interesting meetings ever. I should be at ease knowing all agreed and had my best interest at heart. She said a lumpectomy doesn't require an overnight stay and a lot of people do great the day after. I would probably only have 1 - 2 weeks recovery time. I admittedly was looking forward to 6 weeks off from work only because I had a lot planned during my down time, but hell - I am NOT complaining.
In summary, I'm assuming my intuition was leading me down the right path all along. I was struggling with a decision because maybe I knew or God was telling me there is a better plan. If I weren't persistent and stubborn then I would still be making myself sick with worry and undecided.
I'll keep everyone updated :)
Tuesday, June 5, 2012
Decisions...Decisions
I know it's been awhile since I posted and I apologize. I was going to write a summary email of all my Dr appointments and next steps but right now everything is in limbo (kinda).
My last round of chemo was the beginning of May 23rd. Once I received the results of my PET, my oncologist, Dr. Heyer, said the next steps were to speak to my breast surgeon. On May 9th, I had my appointment with Dr. Chiantella. The meeting went very very well. She explained I have been a topic of discussion over the past week. In a nutshell, she said there wasn't a "medical recommendation" for surgery and it's going to boil down to being an emotional decision for me. We started off the meeting with Dr. Chiantella asking "what do YOU want". I immediately explained that I wanted a double mastecomy. She nodded her head and explained the risk of cancer occuring in my other breast is very low. I did not know that if I did get cancer in the other breast that it would more than likely be a "new" breast cancer. In any event, this news really did not sway my mind. Dr Chiantella provided more statistics and information on the different surgeries available to me. Her only concern was that I have a one year old at home and I can not lift her for about 4-6 weeks. I understand her concern, but I will make it work. I have Christian, family, and friends who are here to help me when needed. I can work it out for 6 weeks or so. In addition, she recommended a sentinal node biopsy to confirm if microscopic cancer cells exist in my lymph nodes. If so, I will need radiation. She explained recent research shows a full node dissection does not make a difference in the risk of reoccurance, so she does not recommend this option. Also, a woman who undergoes full node dissection does risk the occurance of developing lymphadema. I told Dr. Chinatell that I was scared and this is why I am being aggressive in my decision (Stage IV and Triple Negative). She told me she understands, but for me to understand the chances of reoccurance are rare given my response to the chemotherapy. We also discussedd the option for nipple reattachment and it's risk. Also, she mentioned she will be removing my mediport. The mention of removing my mediport really affected me. It appears I have grown emotionally attached to it... Once again, Dr Chaintella was vey supportive and said she will keep it there until I get my implants and then she is removing it. I left the appointment with a decision to make and the instructions to speak to my plastic surgeon who will give me more advice to help with my decision.
The following week, I met with my plastic surgeon, Wendy Gottlieb. Another amazing person who is part of my medical team. She understood why I am opting for a full mastecomy and explained the different procedures available to me. I never knew there are so many options...WOW! I really would explain it to everyone, but my mind spins thinking about it. I chose the option that takes the longest recovery. Yes, I know this is unheard of for those who really know me as I am impatient and want everything done right now; However, my gut was telling me.."Jennifer, don't rush this". Perhaps it was all these diagrams and details that really drove home the fact how serious this surgery is that made me step back and say - just take it slow. In any event, the entire reconstruction will take approximately a year. The timeline follows:
1) Expanders inserted during mastecomy surgery.
2) Wait a couple weeks and then will begin the "fill" process. They "fill" the expanders until we get to the desired size. This can take up to 3 months for many different reasons.
3) Implants Inserted. Wait 3 months
4) Nipples Reconstructed (I didn't opt to keep my nipples due to the 1/2 percent increase in risk of reoccurance). Wait 3 months
5) Aerolas Tattoo. This can take 3 months.
So, Everyone. It's not that a woman has a mastecomy and just wakes up with a new set of girls...it's NOT that easy, unfortunately.
Another option is something called Flap surgery. This would be about 6-9 months, but there are many other things to consider like a scar on my back. While she explained it would be small, I asked for pictures and it's not small. Some of these things seem monsterous and I just don't want to keep scarring up my body for no reason. Also, the risk of infection increases with this surgery. Another thing that sticks in my mind is what they do..they take a back muscle and pull it through your front breast to make the nipple. I THINK I got that right, but my mind was really swarming at that point. The thought of a back muscle being pulled through the front of my body really made me grimace...screw that.
After both of these appointments, my surgery is scheduled for June 28th.
Now...last week I had my first follow-up appointment with the oncologist, Dr Heyer. I was not looking forward to this meeting and now I know why...I went to the appointment by myself as my friend had to attend a last minute meeting. Dr Heyer (as many if not all oncologists) just aren't the most emotional people which I totally get..He sat down and explained to me that he has spoke to Dr Chinatella and has been told that I am opting for a double mastecomy. He tells me that he has thought long and hard about this and doesn't agree. He tells me the risk of developing cancer in the other breast is very low (We know this, but the fear is still there. My chance of getting this dreadful disease was low, too). However, my chance of getting an infection is great. Why increase my risk of infection by a double mastecomy when it's not needed. The reason why he is concerned is...If the cancer returns and I am battling an infection of some sort then he can't treat me. It appears infections you can get during/post surgery are brutal and are not a typical give you a 30 day antibiotic and it's done. These infections can be deadly and last for a long time. If my cancer returns and I have an infection then it very well could be months before I am able to receive chemotherapy. Cancer and waiting months for treatment can obviously be a recipe for disaster. While he is trying to explain himself, I only hear him saying the cancer is going to come back. I focus only on this while trying very hard to listen closely to him while also telling him "I am not going to pass out". He also said he doesn't agree with just a sentinal node biopsy. I did have infected lymph nodes and he feels I just need to get them out. Not risk more than I should. He continues to explain that we can't discount the fact this was in my lungs "Although it was miniscule and we know it didn't (he used some word that I can't remember but he was saying multiply and spread)..it can still very well spread somewhere else. Also, since I am triple negative there is no maintenance drugs available to me. I only have chemotherapy. He said he will talk to Dr Chiantella again and she will call me. I left the appt and went straight to my acupuncture appointment (Thank goodness) and had a damn near breakdown. I sat and talked with Dr Durana, acupuncturist, for at least a half hour. In his attempt to calm me down and get me to think clearly, he tried to explain that he thinks I am overanalyzing what Dr Heyer is saying. He is probably not saying that he is certain it's going to come back, but to understand it's his job to think this way. He has to be strategic. He has to think ahead and think of the worst. I agreed, but it doesn't make me feel any better. I have a hard time understanding how it appears Dr Chiantella and Dr Heyer, who are in constant discussion about my case, seem to be on the same page, but I feel I am getting 2 different messages. In retrospect, I understand better where he is coming from. He did agree with all of Dr Chiantella's statistics and words that I was spitting out to him like a wild woman. "Well, Dr Chinatella said this and Dr Chiantella said that". "I really don't like talking to you...OMG. I am not going to pass out. I promise"...He also said at the end that we could always entertain the idea of a very low dosage of chemo for maintenance purposes. This has been suggested to me before as this is the normal process for Stage IV diagnosis (ongoing chemo, not exactly low dosage though). Although, it wont be considered treatment, but more of a maintenance drug. I do know a woman who receives a low dosage of chemo for years now to manage rheumatoid arthritis. She still has hair, full of energy, etc..She said she takes it to maintain the arthritis and gets it every 2 weeks. Obviously, we didn't go into detail about this. He said first we need to get this surgery underway and take a look at the lymph nodes. While I am clinically clear of cancer, I still need my pathology reports to come back clear - that is key. He assures me there is a lot of positive news, but at that point I wasn't hearing it. In a nutshell, he recommends a partial mastecomy and full lymph node dissection. Also, he wanted to get the surgery moved up a week. No need to wait 5 weeks after chemo.
So....as you can see. A lot has been going on. I expect a call from my surgeon tomorrow. She had her bi-weekly meeting with all the Drs to discuss topics and patients today.
I will keep everyone updated when I hear more and make a decision. Right now, I am leaning toward what Dr Heyer recommends. I am going to replay the conversation with Dr Chiantella when I speak to her to be sure I understand everything since I have a clearer mind. I will keep everyone updated!
Please continue to pray.
My last round of chemo was the beginning of May 23rd. Once I received the results of my PET, my oncologist, Dr. Heyer, said the next steps were to speak to my breast surgeon. On May 9th, I had my appointment with Dr. Chiantella. The meeting went very very well. She explained I have been a topic of discussion over the past week. In a nutshell, she said there wasn't a "medical recommendation" for surgery and it's going to boil down to being an emotional decision for me. We started off the meeting with Dr. Chiantella asking "what do YOU want". I immediately explained that I wanted a double mastecomy. She nodded her head and explained the risk of cancer occuring in my other breast is very low. I did not know that if I did get cancer in the other breast that it would more than likely be a "new" breast cancer. In any event, this news really did not sway my mind. Dr Chiantella provided more statistics and information on the different surgeries available to me. Her only concern was that I have a one year old at home and I can not lift her for about 4-6 weeks. I understand her concern, but I will make it work. I have Christian, family, and friends who are here to help me when needed. I can work it out for 6 weeks or so. In addition, she recommended a sentinal node biopsy to confirm if microscopic cancer cells exist in my lymph nodes. If so, I will need radiation. She explained recent research shows a full node dissection does not make a difference in the risk of reoccurance, so she does not recommend this option. Also, a woman who undergoes full node dissection does risk the occurance of developing lymphadema. I told Dr. Chinatell that I was scared and this is why I am being aggressive in my decision (Stage IV and Triple Negative). She told me she understands, but for me to understand the chances of reoccurance are rare given my response to the chemotherapy. We also discussedd the option for nipple reattachment and it's risk. Also, she mentioned she will be removing my mediport. The mention of removing my mediport really affected me. It appears I have grown emotionally attached to it... Once again, Dr Chaintella was vey supportive and said she will keep it there until I get my implants and then she is removing it. I left the appointment with a decision to make and the instructions to speak to my plastic surgeon who will give me more advice to help with my decision.
The following week, I met with my plastic surgeon, Wendy Gottlieb. Another amazing person who is part of my medical team. She understood why I am opting for a full mastecomy and explained the different procedures available to me. I never knew there are so many options...WOW! I really would explain it to everyone, but my mind spins thinking about it. I chose the option that takes the longest recovery. Yes, I know this is unheard of for those who really know me as I am impatient and want everything done right now; However, my gut was telling me.."Jennifer, don't rush this". Perhaps it was all these diagrams and details that really drove home the fact how serious this surgery is that made me step back and say - just take it slow. In any event, the entire reconstruction will take approximately a year. The timeline follows:
1) Expanders inserted during mastecomy surgery.
2) Wait a couple weeks and then will begin the "fill" process. They "fill" the expanders until we get to the desired size. This can take up to 3 months for many different reasons.
3) Implants Inserted. Wait 3 months
4) Nipples Reconstructed (I didn't opt to keep my nipples due to the 1/2 percent increase in risk of reoccurance). Wait 3 months
5) Aerolas Tattoo. This can take 3 months.
So, Everyone. It's not that a woman has a mastecomy and just wakes up with a new set of girls...it's NOT that easy, unfortunately.
Another option is something called Flap surgery. This would be about 6-9 months, but there are many other things to consider like a scar on my back. While she explained it would be small, I asked for pictures and it's not small. Some of these things seem monsterous and I just don't want to keep scarring up my body for no reason. Also, the risk of infection increases with this surgery. Another thing that sticks in my mind is what they do..they take a back muscle and pull it through your front breast to make the nipple. I THINK I got that right, but my mind was really swarming at that point. The thought of a back muscle being pulled through the front of my body really made me grimace...screw that.
After both of these appointments, my surgery is scheduled for June 28th.
Now...last week I had my first follow-up appointment with the oncologist, Dr Heyer. I was not looking forward to this meeting and now I know why...I went to the appointment by myself as my friend had to attend a last minute meeting. Dr Heyer (as many if not all oncologists) just aren't the most emotional people which I totally get..He sat down and explained to me that he has spoke to Dr Chinatella and has been told that I am opting for a double mastecomy. He tells me that he has thought long and hard about this and doesn't agree. He tells me the risk of developing cancer in the other breast is very low (We know this, but the fear is still there. My chance of getting this dreadful disease was low, too). However, my chance of getting an infection is great. Why increase my risk of infection by a double mastecomy when it's not needed. The reason why he is concerned is...If the cancer returns and I am battling an infection of some sort then he can't treat me. It appears infections you can get during/post surgery are brutal and are not a typical give you a 30 day antibiotic and it's done. These infections can be deadly and last for a long time. If my cancer returns and I have an infection then it very well could be months before I am able to receive chemotherapy. Cancer and waiting months for treatment can obviously be a recipe for disaster. While he is trying to explain himself, I only hear him saying the cancer is going to come back. I focus only on this while trying very hard to listen closely to him while also telling him "I am not going to pass out". He also said he doesn't agree with just a sentinal node biopsy. I did have infected lymph nodes and he feels I just need to get them out. Not risk more than I should. He continues to explain that we can't discount the fact this was in my lungs "Although it was miniscule and we know it didn't (he used some word that I can't remember but he was saying multiply and spread)..it can still very well spread somewhere else. Also, since I am triple negative there is no maintenance drugs available to me. I only have chemotherapy. He said he will talk to Dr Chiantella again and she will call me. I left the appt and went straight to my acupuncture appointment (Thank goodness) and had a damn near breakdown. I sat and talked with Dr Durana, acupuncturist, for at least a half hour. In his attempt to calm me down and get me to think clearly, he tried to explain that he thinks I am overanalyzing what Dr Heyer is saying. He is probably not saying that he is certain it's going to come back, but to understand it's his job to think this way. He has to be strategic. He has to think ahead and think of the worst. I agreed, but it doesn't make me feel any better. I have a hard time understanding how it appears Dr Chiantella and Dr Heyer, who are in constant discussion about my case, seem to be on the same page, but I feel I am getting 2 different messages. In retrospect, I understand better where he is coming from. He did agree with all of Dr Chiantella's statistics and words that I was spitting out to him like a wild woman. "Well, Dr Chinatella said this and Dr Chiantella said that". "I really don't like talking to you...OMG. I am not going to pass out. I promise"...He also said at the end that we could always entertain the idea of a very low dosage of chemo for maintenance purposes. This has been suggested to me before as this is the normal process for Stage IV diagnosis (ongoing chemo, not exactly low dosage though). Although, it wont be considered treatment, but more of a maintenance drug. I do know a woman who receives a low dosage of chemo for years now to manage rheumatoid arthritis. She still has hair, full of energy, etc..She said she takes it to maintain the arthritis and gets it every 2 weeks. Obviously, we didn't go into detail about this. He said first we need to get this surgery underway and take a look at the lymph nodes. While I am clinically clear of cancer, I still need my pathology reports to come back clear - that is key. He assures me there is a lot of positive news, but at that point I wasn't hearing it. In a nutshell, he recommends a partial mastecomy and full lymph node dissection. Also, he wanted to get the surgery moved up a week. No need to wait 5 weeks after chemo.
So....as you can see. A lot has been going on. I expect a call from my surgeon tomorrow. She had her bi-weekly meeting with all the Drs to discuss topics and patients today.
I will keep everyone updated when I hear more and make a decision. Right now, I am leaning toward what Dr Heyer recommends. I am going to replay the conversation with Dr Chiantella when I speak to her to be sure I understand everything since I have a clearer mind. I will keep everyone updated!
Please continue to pray.
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