Thoughts on removal of opposite healthy breast?

linn65 · 07-20-2013, 06:23 PM

In the Beginning I was sure I wanted to remove my right breast Because I didn't want a chance of reoccurrence on the other side. However, three doctors have said very little chance of that happening. They will do it if I want them to for Symmetry. One breast surgeon said it's 50-50 on what her patients do because if they're young and have children they say take it off they don't want to take any chance and if you're older they don't want to mess with having another surgery. Ultimately she said it's what you're comfortable with and what you want to do and that's with all of the doctors said.

My reconstruction is scheduled for October 24 so I'm just trying to research before I make that final decision and curious on other BC women think.

Decisions, decisions, decisions, and more decisions.😳😳😳

KsGal · 07-23-2013, 06:00 AM

Well, everyone is different, and you just need to choose what makes you feel the most comfortable. I had my healthy breast removed because I was scared to death I would have a recurrence there. Instead, I got mets to the liver and brain...woot! Take your doctors opinions into consideration, but also take your gut instinct into consideration and do what you feel is right for you. Sending lots of prayers your way...

snolan · 07-23-2013, 07:53 AM

I chose both to be removed same reason as most didn't want to have to go through this again. I am happy with my choice and love my new boobies (they look better then the origonals). I even went up a size and am having fun wearing tight shirts to show them off

Go with what your heart tells you, in the end you should be able to tell yourself you have no regrets. Good luck.
Suzanne

linn65 · 07-23-2013, 08:02 AM

You know in the beginning I was sooo sure I wanted them both off. Then after I had 1 off and now know that it is numb and still has pain when I touch it under the incision I think if chances are small 1% or something then keep my real one. If I would have had them both taken off in the beginning then I would have never known how it would have felt to have one removed. I wanted him to take both off at the same time and my doctor told me NO. He said imagine you have a full plate right now and you have so many things on your plate that we want to do one thing at a time on your plate.

I read last night for the first time that if you have cysts or whatever they are called in your opposite breast that if it is a certain type of lump then it has a higher risk of turning into BC later on down the road. Now, I am thinking well....Crap on a crap stick (lol) if I have Atypical hyperplasia cysts then that is the type that has a higher risk. Well, I don't know which kind I have, so I wrote that in my notes for questions to the doctor.

Also, I know I have enough fat for 1 breast not sure about 2 for the DIEP surgery. I am 36 D and would be fine to go to a C cup.

tricia keegan · 07-23-2013, 01:43 PM

Personally I think if we're going to have a recurrance we'll have one anyway regardless of whether the breast is removed or not, a mast can't stop that and although the risk lessons there's still no guarantee's so wouldn't put myself through more surgery.

healing · 07-29-2013, 05:45 AM

I was just faced with making decisions to my good side last week. At the end of June, my mammo showed something that wasn't there before and it warranted a biopsy. Results showed dcis with a micro-invasion of idc. Because this was the second time around, a mastectomy was in order. I met with a different surgeon than previous and a plastic surgeon who both were in agreement that my case didn't warrant a double, but to be sure we would do a MRI. So now we check the supposed good side and find there is no huge difference since my last MRI but after Four radiologist and the head of the department review it, they agree there is a slight change in the enhancement. They felt as though they were seeing too much enhancement in a breast of woman who hasnt had her period in two years. So, they want to investigate further with an ultrasound. They knew there was one spot that they planned to biopsy, but surprise, surprise, there was another one! Since we have had cancer, we know we are red flagged for every little thing, but we also know that every little thing could be something. Because of the stress of those few days and even though the biopsies were benign, I chose to do the good side also.

The day before my surgery, I had the lymphoscintigraphy procedure which reinforced my decision of the right side. After the tracer is injected, they scan the flow of your lymph and instead of the tracer going towards my left side which had the cancer, my tracer flowed to the right. My surgeon said she usually only sees that if multiple nodes had been removed previously. So, at 9:00pm surgery eve, my surgeon called to discuss these results and let me know that she had to do a snb on the right side also....ugh. As she put it, 'It's always something!'
So, here I sit, 5 days post-op, feel great, have minimal soreness, and great range of motion. I arrived home on Friday night and again at 9:00pm receive a call from my surgeon, letting me know the good news. My pathology was in and the nodes were clear (which she had already let us know) and the micro-invasion was even smaller that she anticipated- 2 spots at .2mm each, T1mic. The pathologist had a really hard time finding them. I will meet with my onc soon but as he said at the beginning of this, 'this is a bump in the road'. We can handle the bumps, it's the potholes we worry about!

So, after experiencing the stress of biopsies, ultrasounds, etc. I'm glad that we reviewed everything and came to a thoughtful decision. I hope you find peace at whatever decision you make.

roz123 · 07-29-2013, 08:32 AM

here was my perspective - just my thought process on why I did both:
1. my breasts were extremely dense and hard to image - I asked about MRI's and they said "maybe" and only once a year. I live in Canada so im sure public healthcare had something to do with it. I know my cancer grew very quickly so if something else was going on in my good breast I wasn't confident that it could be caught early
2. im young - so being young can be a deciding factor for or against removing the healthy breast - I have a long time to get another bc but on the other hand it would be nice to have sensation on one side - its shitty enough that being slammed into menopause makes my sex drive zilch but having no boobs is just insult to injury
3. I really don't trust stats anymore. When I was first diagnosed I was told repeatedly that they didn't think based on my risk factors and age it was cancer. I had a 1.5% chance of getting bc at 42 with no risk factors (other than dense breasts which I found out after)- well lo and behold I was that 1.5%. That's just me

Remember if you are doing DIEP you can only do it once - that said there are days like I said above when I wished I had kept one just for sensation but it is what it is
good luck I know its a tough decision to make

jaykay · 07-29-2013, 02:17 PM

I was in a different situation than you and most of the others. This is my 2nd visit from bc.

I was diagnosed with Stage 1a (her2+/er+/pr-) 13 years ago, left breast. Had a lumpectomy, snb, radiation and anti-estrogen therapy (for 10 years). No chemo, no herceptin

Had a new primary (or recurrence?) with same pathology in the other breast last September and decided to wait until my BRCA test results came back before deciding on whether to have another lumpectomy, single mastectomy or bmx.

I then hit myself on the head and asked if I were crazy. I got rid of them both because there was no way I could go through this a third time. I know there are no guarantees but the odds of it coming back in what's left of my breasts are very slim. And I wouldn't have considered leftie healthy.

I'm also 62 (a very young 62 :-) and they don't mean as much to me as they would to someone 20 years younger. I do miss the sensation, though. I have no regrets and can understand what a difficult decision it is for you. And you can always decide later.

Best
Janis

chekmark · 07-29-2013, 04:53 PM

I only did one side but got an implant on the other side for symmetry. It was never a discussion with my docs about the other side,never even brought up but if it had at the time I was so freaked out I am not really sure what I would have done. I have always second guessed my decision so just be comfortable with your choice. My story is rather lengthy so I won't bore you that. I didn't have time to think it thru but it sounds like u do, take your time, write down the pros and cons and slowly, clearly make your decision, it's one you have to live with for the rest of your life. No decision is a wrong decision and its a personal choice. Personally, I still worry about recurrence on the mast side as much as the normal side. Good luck to you.

Jackie07 · 07-30-2013, 09:26 AM

I insisted on a double mastectomy after the recurrence was found. Because the recurrence was misdiagnosed for 4 straight years, I did not want to take any chances (sort of lost my confidence on both the mammograms (technology) and my doctors (human error...

Turned out I did have some genetic traits (insisted on a BRCA test after learning the Jewish settlement in ancient China - both my parents are very fair-skinned) - had a prophylactic hysterectomy/oophorectomy after 2nd Brother's colon cancer treatment put us in the HNPCC cluster ...

starwishn2 · 07-30-2013, 09:37 PM

I went with the double mastectomy. At first, my husband and I were comfortable with a lumpectomy. However, after an MRI - 3 more spots were found and biopsied. On that day I decided I did not want to go through that again every year (dense breasts like everyone else here). I've never regretted my decision. The expanders were miserable and the implants aren't great... yet. But I have an awesome PS so I know we will get there. I do miss "feeling" though. This stupid dumb breast cancer!! Good luck - I'm glad you have time to think about it!
Jeri

linn65 · 07-31-2013, 05:31 AM

I am leaning towards maybe removing the right one now! I am like a pin ball machine with this. I go August 5th to see my BS, and I will talk about it again with him.

But now I am wondering since I decided to keep the right side, and I am having the DIEP flap surgery can I have the right side removed and both breasts done the same day??? Or do I actually need to have the right breast done in 1 surgery, heal up and go back for the DIEP on both.....Oh my gawd please tell me that wouldn't be the case!! If I decide to get the right off I want to get it off and get them both reconstructed at the same time!! But I don't know how that works with the DIEP flap surgery. If you have to have it removed then heal up and then go back.

Becky · 07-31-2013, 05:42 AM

Although I have both my breasts, I have explored having both removed (and I am almost 9 years out). I will definitely do so if I have another problem.

That said, if the time comes mentally or medically, having them removed with immediate DIEP reconstruction can be done (and you already have one removed). So, in answer to your question, you can have the other breast removed and then be reconstructed on both sides at the same time.

linn65 · 07-31-2013, 05:44 AM

Jackie,

How in the world could a reoccurance go misdiagnosed for 4 years???? OMG that is awful!!

BTW I sure respect and admire all the knowledge you have about BC. I trust this boards advice soooo much because of people like you!

Thank you.

linn65 · 07-31-2013, 05:51 AM

Becky, I just read your message. So I can get the right removed and the DIEP all the same day??? Oh that is such a relief to know that I can....I kept thinking what if I have to have to go in to remove the right side, come home heal and go back in IDK a couple months and have them both reconstructed with the DIEP flap. I don't have enough sick/vacation time for all the things to get done, so I need to be uhm fruigle (sp) with my surgeries!! LOL. I mean geez the reconstruction on October 24th is supposed to be 6 to 8 weeks off work. Then thank gawd the next one where nip/tuck as he said would be a 2 hour outpatient and two weeks off work. Then the final would be 2 hour outpaitent and if I have it on Friday I could go back to work on Monday. On the good note my time starts over in January so that would take care of those two surgeries!

However, if I do them both then I could skip the nip/tuck one, I guess. I know, I know I need to call the doctor to confirm...But as you know I talk to this board like I talk to myself it is my sounding board!!! VERY, VERY THANKFUL FOR THIS BOARD!

linn65 · 07-31-2013, 08:56 AM

It is funny but not funny....I don't even trust my gut instinct anymore because it isn't rational either with this darn BC. LOL.

SOOOOO, I am trying to make the best decision based on medical intellect I guess because I really don't trust myself with this decision.....Because I go back and forth with all of this now. I suppose I did not before because I knew it was so far away it seemed when the whole process started and now it is getting closer; only 1 herceptin left and surgery in October I guess I want the impossible and want to be absolutely sure this is the best decision.

I know NO ONE can tell me what is best to do for me, but it helps hearing others say what they did and why they did it.

I can tell you another thing that I am absolutely, 100% positive about is I am really tried of making all these DYNAMIC DECISIONS!! I never really thought of it but BC is like a game of Chess and every move you make can make a difference possibly in the outcome I think. There is my rambling for the day...... but stay tooned it's early in the day I could ramble again!!! LOL