Double mastectomy recommended but still my choice

resigned · October 2014

I've read as much as I can on this topic but I thought I'd ask here too. My team has recommended a double mastectomy but said in the end it's up to me. I think I'm going to opt out. The cancer is all on one side, nodes only on the one side. I know many women decide to do double preventatively and I respect that but it doesn't seem like the right choice for me. But now I'm getting these passive aggressive questions from a few people about why I wouldn't do "everything" to make sure I'm "safe." My mother has even used my daughter to try and guilt trip me. I really wish people would leave me alone about it. It's MY CHOICE!

WinningSoFar · October 2014

Dear natural,

You are so right--it is your choice. I would just advise you to try to try to separate your own emotional reactions from the recommendations of your cancer team. Just because your mother and other family members are pressuring you is certainly not a reason to do what your family thinks you should. What do they know anyway? However, their pressure is also not a reason to resist them either.

Choose who you trust and then do what they recommend. For me, it was the consensus of the tumor board, and I just assumed they knew a lot more about what was advisable for someone like me. They had better sense on that than I did. That was how I chose to react. I will never know if I did enough or too much. You just take your best shot and hope for the best.

wrenn · October 2014

Absolutely your choice. Recovery from single is easier I would imagine although I only needed plain tylenol the day after BMX. I had opted for BMX because I had large breasts and would have been lopsided. When pathology report came back the surgeon told me she was glad I chose that option because the other side showed pre cancerous changes. This is not to make you feel guilty because even if something does come up in the other breast eventually (which is unlikely) you can deal with that then.

My sisters had said "get rid of them both" thinking cutting off all to do with breasts would save me but obviously they hadn't done any research to see that outcomes are the same with both in the majority of cases. Remember that those trying to make you feel guilty are reacting with emotion and not common sense.

Best of wishes to you.

resigned · October 2014

I agree that the people who're pressuring me don't know anything! They haven't gone through this. As for the doctors well I have posted before about how I don't assume their gods or something just because they have a Dr. They did recommend double because they said my cancer is aggressive. They know a lot of course but in the end I have to do my own research and make up my mind for myself. They all seemed trained to do the most treatment possible and I'm trying to do the least necessary. It's a different point of view.

ml143333 · October 2014

You are correct, it is your decision. Have you asked for the reasons your team recommends a BMX unless you already know. Maybe there is a valid reason for their recommendation.

I had BMX when a lumpectomy was recommended. My BS said it was a good thing because there were atypical cells in the breast that was not affected. I had a BMX and immediate implants.

resigned · October 2014

It was after the PET scan that they recommended a double mastectomy (BMX?). Thank god they didn't find any metastasis but given the nodes and the spread on one side they said it may show up in my other breast. "May" is not enough for me. I'm sure I'll have yet another appointment before the surgery is scheduled so I can talk with them again. My Chinese herbalist is confident that since I'm in such amazing shape and so healthy with the right food and supplements I can avoid a recurrence. I know not everyone agrees with that approach but it's the right one for me.

wrenn · October 2014

http://thetruthaboutcancer.com/live/episode1.php ... copied from 'the truth about cancer' thread

the information on this link is on your side.

rozem · October 2014

naturalhealing...the cancer being aggressive is not usually a reason to do a double mast and cancer showing up on the other side isn't a reason either other than maybe if your ILC, and even then I wouldn't say double mast is recommended. Maybe ask for further clarification so you can make an informed decision. This is your body and your choices, the doctors can only make recommendations on SOUND reasons ie: large tumor vs breast size, multifocal cancer, brac positive or very strong family history etc...

zha-an · October 2014

naturalhealing...BTW luv ur handle! I didn't see anything about the histology of your tumor..is it Er+,Pr+..her2 status? Is there a strong family history or did genetic testing show high risk? Just trying to understand why your docs are pushing for BMX... Ultimately it is your choice. You know your body better than anyone else. Docs may know many bodies but there's only one expert on your body...YOU! And like one of the other ladies said..if something shows up in the other breast down the road.. You can deal with it then. Even if that happens it would be caught early and be treated effectively since we are all going to be monitored more closely because of our Dx....dont let anyone pressure you...not even us! Thinking of you during this difficult time and holding the image if your perfect healing.

zha-an

Ariom · October 2014

Hi naturalhealing, another Uni here. I felt like you and couldn't in good conscience, remove my good breast. I also knew recon wasn't right for me either. I am almost 2 years out now and have no regrets whatsoever about my decisions. I know what I chose isn't for everyone. but it was, my choice.

Don't allow anyone to guilt you, or force you either way, that is just wrong. This is a huge decision and really has to be yours alone. I had the discussion about this with my family, but fortunately they wanted whatever I wanted and in fact they really didn't want me to have any more surgery than I had to, so I didn't have any resistance at all. I did have some friends who wanted to put in their 5 cents worth, but I told them, if or when, they are ever in this situation, I will be there, to support whatever they choose to do!

Bippy625 · October 2014

Hey Natural, me too with it being my choice...I may even technically qualify for a lumpectomy however in my case I have multiple tumors so would be left with not much breast. Also, I have very dense tissue and nothing show on mammos, so instead of getting checked every 6 months forever on the other side, and worrying about it, I am leaning towards BMX. BMX is recommended by my onco, but she says it is my choice. I am choosing reconstruction too, so wanted to look as even as possible.

Somewhere here are good posts with links saying that lumpectomy vs. BMX has neglible differences in recurrence, but I forgot where. So a BMX is not total protection, in other words.

Good for you for doing what is best for you! i recently told a family member who sputtered out her idea of exactly what i should do, well, tell ya what. When YOU get it, you can decide whatever you want! Naturally, this person has never had cancer.....so full of advice though! Errrgh.

Akitagirl · October 2014

Hi Natural - I agree with all the others before me...it IS your choice. I had those exact same emotions, and was somewhat righteous about others succumbing to "prophylactic mastectomy", I judged them and thought they were too fearful and silly to think that BC would automatically spread to the other breast. But then..I started reading all the stories posted on this incredible board, started reading of lumpectomies turning into unilateral mastectomies and then coming back 1-5 years later for necessary mastectomy on the other side. I started thinking about how that must impact not only their physical health, but their mental and spiritual well-being. I finally let go of my righteousness when I was completely shaken to the core by finding out that I have a PTEN mutation. The PTEN gene is a tumor suppressor, and if it is broken...then tumors will grow. I read about the fact that recent studies show a 85% risk of breast cancer by the time a woman is 50 (I am 42), and that bilateral cancer (i.e. other breast) is extremely common. So, with complete humility, I am accepting the fact that I need to have a bilateral mastectomy - even though my tumor is only 1.8 cm and even though I am HER2- and clinically there is no lymphatic invasion. I want to walk in freedom, knowing that I did everything I could to beat this and allow myself the years needed to see my daughters graduate from high school, college, first boyfriends, engagement, wedding, children, etc. I will not look back.

I guess the reason I share this with you...is to encourage you to look at all the facts before you make your final decision. Ensure that you have all the data needed to make an informed decision. Truly ask yourself if your lifestyle will allow mammograms every 6 months and CBEs every three months. Ask yourself if you would be walking in freedom and not carrying around the 'brick of doubt' in your pocket -as a result of either choice. Bottom line - it is YOUR choice and you will find support here for whatever choice you make!

All my best,

Akitagirl

Akevia · October 2014

Natural healing I agree with you. I was giving the same recommendation but I'm not cutting off my healthy breast. Goodluck to you.

Double mastectomy recommended but still my choice

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