How to decide to have the "other" breast removed.
On November 28th the result of my biopsy was DCIS, suspicion of invasion, intermediate grade. My surgeon stated that I have "lots" of DCIS and recommended a mastectomy. How do I decide prior to understanding more about my cancer, whether to have the healthy breast removed too. Surgery is booked for December 18. What factors did others consider in their decisions. Thank you so much for your assistance. I have been spending hours reading all of your posts and would have died from fright by now if you had not all been there for me (even if you didn't realize) 
Comments
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TB90, this thread might help:Topic: lumpectomy vs mastectomy - why did you choose your route?
Although you don't have a choice about a whether to have a lumpectomy or MX, the discussion will still be very help as you decide between a single MX vs. a bilateral MX. And take a look at the list of considerations in my June 13th post. -
Thanks Beesie, but how do I find your June 13th post? I tried to find it last night, but you have many posts as you are so busy helping others. I noticed your Canadian flag on your pic. I too am from Canada, Winnipeg actually. -
TB90 I had to have a mastectomy and no one even suggested I could have my healthy breast removed. I wish someone would have. A year later, I discovered I could get my other breast removed. And I am so happy I did. I feel so liberated! I go everywhere flat. I'm 71 and retired, so I might feel differently if I were still teaching. Best wishes for your difficult decision. Jan -
TB90 - you have a difficult and personal decision a head of you. I made the choice to keep my "healthy" breast and deal with whatever the future has for me. I had a hard time being okay with removing one breast let alone removing a breast that at this time is healthy. Do I regret my choice, not at all. It is stressful when it comes close to time for my recheck, but not as much as the stress and discomfort I have been through with my MX and reconstruction. Think it through and do what is right for you and what you can live with. Remember once it is gone there is not going back. Good luck! -
TB90, click on the link that I included in my first post to you. On page 1 of that discussion thread, you'll find my June 13th post that I think will be helpful with your decision-making.
By the way, like mrenee68, I had a single MX only. And I feel exactly as she does. I'm 8 years past my diagnosis, and I know that I made the right decision for me. What you have to determine is what's the right decision for you! -
my decision for the other breast was because of family history. Several family members had had breast cancer and one aunt had had breast cancer in one breast and later in the other--two different kinds of breast cancer. I had skin sparing nipple sparing double mastectomies with reconstruction at the same time. I had saline implants. I did not do chemo but have taken Anastrozole for the past 3 1/2 years. I am doing pretty well except I am tired all the time and have some joint pain. -
Right there next to the angst that the cancer dx gives you is the decision of what do I do now!!!! I had a lumpectomy to begin with then developed DCIS in the other breast years later. Another lumpectomy could have happened, but it seemed prudent to do the mx and get it 'over with'. The lumpectomy breast could have been spared, but seemed also prudent to do a two-for and not have to deal with the mammograms (after my lumpectomy - scar tissue formed and mammograms were very painful and frequent as my first bc was IDC and aggressive). I chose a bmx with reconstruction using my own tissue, because of complications I lost a flap and had to wait until my body healed to have another go at the replacing the failed flap. So in essense, I had one flap/breast and one flat side from May until January.
In that time it was a challenge to me to make both sides look the same, the inserts either weighed too much and were painful or too light and traveled in my bra - now remember this is my story which may not be your experience, but wanting to let you hear both sides of it (no pun intended!). I was ever so grateful to have both sides feeling and looking matched when I finally finished my reconstruction.
I had complications that usually don't happen to people, so my experience won't be the same in that regard, but I for one was happy that I chose to have a bmx and reconstruction. I was also happy with the lumpectomy except for the mammograms and the times it took wearing a padded bra to hide the defiency in that breast.
Hope this helps, no matter what decision you make, when you do, don't look back, only know that you made the right decision for YOU and everyone needs to respect that!
So very sorry you have had to join us
Hugs
Catie -
I just knew that if it ever happened that I would have both removed. It is a very personal choice. I do not regret for one minute having both removed. Good luck with your decision and know that there is no right or wrong. -
i had very large breasts and opted for double for balance. The surgeon said she was glad i chose that because post op pathology showed pre cancerous changes in the other breast.
It is a difficult decision but you can change your mind up to the last minute so don't rush yourself. -
Thank you everyone for sharing your thoughts and choices with me. I left a message for my surgeon and she tried all day to contact me but she called at home, not at my work. I hope to speak with her tomorrow. I am so impressed that my surgeon called back so soon and so often. I have never experienced that level of service from the medical field and as a social worker, I have advocated for hundreds of persons and families. So I think I have a good one. I can see that this is a very difficult and personal decision and I would have hated to have made it alone. I have made a decision from the heart, but also want to ensure that it is a medically sound one. All the stats are so confusing and even contradictory. I also know the reality behind stats so cannot accept them at face value. Your experiences are what matters more.
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TB90,
I was in a similiar situation as you. In 2008, after my first mammogram at age 40, I ended up having a lumpectomy, with an ADH diagnosis.
July of 2013, I had another lumpectomy on the same breast, and there were 2 areas of DCIS found, small margins. After more diagnostic tests, MRI & mammogram, I had 2 more needle biopsies with ADH found again! My oncology surgeon gave me several options, mastectomy with reconstruction being one. I have opted to have a double mastectomy with reconstruction, because I don't want live with the possibility that I may have cancer develop in the other breast, and possibly be invasive. I'm willing to endure the discomfort of surgery and reconstruction, to have the peace of mind knowing I've drastically reduced the chance that I will ever die of breast cancer. My surgery is scheduled for Monday, December 9th.
This is just my experience, and the only decision that I could make for me. You have to make whatever decision you are comfortable with. Good luck to you, and know that we have all been there, and you will have much support from all of us here, no matter what your decision is! -
TB90, here are the two big things that I've learned through my time on this board:
First is that everyone looks at things differently. I remember that I learned this when someone was struggling with a similar decision to yours - lumpectomy vs. MX vs. BMX - and I commented that one of the downsides of having a MX and particularly a BMX is that you lose all nipple sensation. For me, that was one of the reasons I opted to keep one natural breast. Well, I remember that this women replied by saying that she'd always hated her nipples because they were too sensitive during sex and she'd be glad to have them gone. I think my mouth dropped open in disbelief when I read that, but it certainly taught me that I can never assume that what is a "pro" or a "con" for me will be also be a "pro" or a "con" for someone else. In fact what I might see as being a benefit of one approach might be seen by someone else as being a downside, and vice versa.
Second is that everyone's experience is different. I recall posting about how easy my MX surgery was for me and advising others that it was an easy surgery.... until I started reading posts from some women who had terrible pain or difficulty with healing or mobility, etc.. So I learned to not talk so much about my own experience but to share the possibilities of what might happen, based on what I've read about everyone's experiences.
I say that to make the point that while the stats may sometimes be conflicting or confusing, in my mind the stats - which measure in an unbiased way what happened to very large groups of women - are more reliable than individual anecdotes and individual experiences. It's helpful of course to know why other people made the decisions they made, and it's helpful to hear about their experiences, but I always caution that we should never make our decisions based on what happened to someone else, because what happens to us might be - and quite possibly will be - completely different. Similarly we should never make our decisions based on someone else's reasons, but only on our own. My fears and concerns are different than yours. My personal experiences are different than yours. My risk tolerance is different than yours. So my reasons for whatever decisions I make will be different than yours. That might lead to different decisions, or maybe not. Everyone needs to be sure to make their decisions based on digging deeply inside themselves in order to understand what is right for them, both in the short-term and over the long-term. There is no shortcut to this, no easy way around it, not if you want to make a decision that you don't start second guessing or regretting in the future. -
Tb90 - I would enourage you to ask your surgeon to provide you with a clinical recommendation, so at least you have that data point to consider. I had a hard time initially getting my team to do that.
I had a lumpectomy and then my team recommended a mastectomy because of the results of my pathology. I had decided to do a bilat mast, but as it happens, I just had a biopsy that confirmed dcis on the other side anyway. I will have a bilateral mast with diep recon next week.
A few things that I thought about in making my decision - may not be relevant to you - as everyone says its a very personal decision:
- because I'm using my own tissue, I can only harvest tissue from a site once. So if I did one side now, and needed to do the other side later, I would have to pick another site or use an implant
- I'm healthy now (except for this little cancer issue), and believe I will tolerate the surgery well and recover well. I know that complications can happen, but I believe I'm in the best position healthwise to minimize the risk of complications. Who knows about the future.
- I have a great support system now. I'm single and will move I with my parents to recover. That might not be possible in the future. I don't have any sisters, and can't quite see my brother taking care of me. Friends would always be an option, but they all have full time jobs, kids, etc.
- If I wanted to be symmetrical, I would have to do a reduction on the dcis side anyway, so some form of surgery would be required
- this cancer diagnosis has played havoc with work. Everyone has been amazing in accommodating me and taking over serving my clients. But I know that I need to get back to operating at full capacity, and in my mind, doing a bilateral now gives me the best chance to not have to deal with a big surgery like this again in future (at least for breast cancer)
- my team has told me that I would have to be watched very carefully in the future. I found the testing process very stressful (way more than I expected, or that with hindsight I feel was rational). Having said that, I reacted the way I did, and would like to minimize that stress going forward.
Best of luck with your decision. Once you make it, don't look back.
Ridley -
For those of you who chose MX or BMX - was a consideration whether or not you would have chemo?
I have a very aggressive (HER2+++) IDC that appears to be small (2cm). MO recommends neoadjuvant (pre-surgery) chemo (with Herceptin and Perjeta - the new "dual" HER2 blockade therapy). MO is optimistic that I will have a "pathologic complete response." If this happens, and I choose lumpectomy (as recommended by BS), surgery would mean removing the tumor "marker" and a sentinel node biopsy. Cosmetic result should be excellent.
Even though I have no family history for BC, MO recommends BRCA genetic testing (because of my age - 42 - and the aggressiveness of the tumor). I am thinking that if the test comes back negative, then I go with the lumpectomy as recommended by the BS. I will be pounding this cancer with: chemo, HER2 dual blockade, lumpectomy, rads & tamoxifen.
But I hear of so many that choose BMX. I am wondering if this decision had anything to do with avoiding chemo? Due to the aggressiveness of my cancer, there is no way for me to avoid chemo. Only question on chemo is whether I get it before or after surgery. Before seems like a no-brainer for me because (1) it's the only way I can get Perjeta, the newly approved 2nd HER2 drug, and (2) it should shrink the tumor - possibly completely - and therefore lead to an even better cosmetic result than if I would have the surgery first. -
You can't avoid chemo by having a MX. That doesn't just apply in your situation, but all situations.
Chemo is a systemic treatment - chemo moves through the entire body, tracking down and killing off any rogue breast cancer cells that might have moved from the breast into the body, prior to the discovery of the cancer and the surgery. The objective of chemo is to reduce the risk of mets, i.e. a distant (beyond the breast) recurrence.
Surgery is a local treatment - it treats the breast only. So whether one has a lumpectomy or a MX makes no difference as to whether one needs chemo or not. If it's judged that you need chemo, then you need chemo whether you have a lumpectomy or MX. And if it's judged that you don't need chemo, that won't change by choosing to have a lumpectomy vs. a MX.
While the surgery choice doesn't affect the need for chemo, chemo can affect the surgery choice. If someone has a larger tumor and if it's deemed that they need chemo, then chemo can be given prior to surgery. In addition to it's systemic role, tracking down cancer cells in the body, chemo can also be effective at reducing the size of the tumor. So if chemo is given prior to surgery, it may allow some women to have a lumpectomy rather than a MX, which would be required if the tumor had remained the original size. -
I had chemo presurgery, and had it shrunk the tumor enough, I would have gone with a lumpectomy for sure. The chemo shrunk my tumor from 9cm down to about 4cm - so had it gone down far enough to have the lumpectomy, I would have felt very confidant that it had done it job on things they couldn't see in either breast. My surgeon told me that another surgeon had asked him - "If you know that someone is going to have to have chemo, can you think of ANY disadvantage to having chemo before surgery"? He said he really couldn't and that there are a lot of advantages - being able to 'see' the effects of the chemo, see the 'bed of the tumor', and have a better shot at clear margins. It seems to make sense to me. -
You can decide to do a unilateral mastectomy now and, if you decide subsequently that you do want the second mastectomy, you can do it at a later date.
I originally decided upon a unilateral so that I would be more independent in recovery and, hopefully, be able to get back to the office more quickly.
However, once I got my post-surgical path report and realized that my right breast was a cancer hatchery par excellence I made the decision to have a prophylactic left mastectomy. As it turned out it was wise I did. There were several foci of precancerous cells lurking in there. My surgeon confirmed that I had made the right decision.
My mastectomies were separated by 3 months and, other than persistently stubborn seromas, I had no complications.
I should add, though, that reconstruction was never under consideration and that greatly simplified my decision making process. -
kmpod: That was really useful information for me. I know there is no right answer, just the best answer for each individual and you voiced my sentiments exactly. My surgeon supports just the UMX as well. I can change my decision if necessary as info presents itself. I am opting for the least possible surgery, including no recontstruct.
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TB90
As others have said, this is such a personal decision and factors, diagnosis, priorities etc. vary person to person. I had bc in one breast and when the surgeon was discussing options, lumpectomy was not one of them but UMX was. A little voice in my head (I like to think it was God) told me to go the BMX route which I did. After surgery I learned there were undetected cancer cells in my other breast as well...so I avoided two surgeries, two recoveries etc. I do believe a persons age factors into the decision making process. I am 58 and so cared much less about the cosmetics of it all than I would have at 38. I posted on another thread that I am voluntarily having another surgery to replace saline implants with silicone and going smaller. So I haven't saved much in the surgery part but I am hoping to improve the quality of my life with this "last" surgery. One final thought - once your breast(s) are gone they're obviously gone forever, so if you save one and lose one, you will always have one remaining. That is the good news in all this. Good luck -
Amy -
TB90, as others have said, it's such a personal decision. I chose a UMX because A. all my doctors agreed that in my case, there was really no advantage to having the healthy breast removed (although they would have supported me if I wanted a BMX), B. I wanted the least amount of surgery while being safe, and C. I found the idea of keeping at least one natural breast very appealing as a reconstructed breast does not have much sensation. While annual mammograms on my healthy breast are always stressful, I do not regret my decision at all.
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TB90--like others said it is a really hard decision, and I too struggled until my bs made the decision for me and it was a relief. He said that he could see that I had indecision about a umx or bmx, so he wouldn't let me make that decision while facing cancer. He suggested that we divide our plan into 2 parts-treatment and prevention. I needed a umx for treatment now, the other side was prevention and could wait until treatment was over. Again, this was because I was not 100% for the bmx and he wanted me to be more at ease.
It was the best decision for me and I hope you have found the best path for you. There is no right or wrong. -
Thanks everyone for your support and for sharing your experiences. I have surgery in three days . . . getting very nervous, and have decided on a umx. My surgeon would have supported whatever my decision was, but she clearly favored the umx. Although there are no right or wrong decisions, it did feel better to have my surgeon's blessing.
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TB, good luck with your surgery. I'm another UMX person and I found the surgery and recovery to be much easier than I expected. Hoping that it's the same for you! -
Beesie: I do not have words to express what a life saver you and your information has been for me during this stressful past month. I leave tomorrow morning as I have to travel a bit and will post as soon as I return. Thanks for your well wishes.
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TB90 - hoping for the best outcome ever! And congrats on making your decision - now don't look back just go forward with the option that you've made and realize it's the best for you!
Hugs
Catie
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TB90, I am so pleased you've made your decision.
You'll be having your Umx exactly 1 year to the day after I had mine. I understand how you're feeling right now, it is daunting, but as Beesie says, it is an easier surgery and recovery than you expect.
I wish you all the very best for a speedy, uneventful recovery!
Let us know how you're doing.
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TB, thank you for your very kind words. I'm glad that I've been able to help.
Thinking about you today and hoping that your surgery goes well. And sending very gentle cyber ((Hugs))... you won't want to be squeezed too hard for a while!
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Had my left mx yesterday and am home and recovering well. Very little pain actually. No nodes removed so sentinel nodes must have been clear upon first analysis. Feeling so relieved to have that over and not bad at all. Going into the operating room and looking up at the big lights and the reality hitting me about what was happening, I started to feel overwhelmed and then thought about all my "sisters" that had been through this and were cheering for me. It gave me the strength to just close my eyes and let it all happen. Everything went well from there. Thanks again for everyone's support. I never thought that it would be women who I have never met that would get me through this!
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Yeah!! So glad to hear that you are doing well after surgery.
Re the nodes, do you mean that no more than the sentinel node(s) were removed?
Often a quick check of the sentinel node(s) is done while the patient is in surgery, to see if there is any nodal involvement. If there is, then more nodes may be removed during the surgery. If the sentinel node (or nodes - often more than one node "lights" up during an SNB procedure and therefore more than one node is removed) is clear, then no additional nodes are removed. The final word on the nodes still has to come from the final pathology after surgery, but having that first indication during surgery that the node appear clear is definitely good news!
Fingers crossed that the rest of the pathology is also good news!
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They must have removed a sentinel node or two, but nothing else. So now hoping the pathology report confirms this initial report. At least I can relax for awhile and enjoy the holidays.
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