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.