recurrence after bilateral mastectomy

beergirl

recurrence after bilateral mastectomy

beergirl

Has anyone out there had a recurrence after bilateral mastectomy?

colleen42

Good question...I also had bilat masectomy and would like to know of anyone out there with a reoccurance.

otter

Your question might not be noticed on this discussion topic. Maybe you could try posting it on the reconstruction topic, or the prosthesis/no recon, or even on one of the "recurrence" groups.  I  know there can be recurrence after mast. (even bilateral), because even a "total" mast. cannot remove every last bit of breast tissue.  I don't know how often that happens, though.

otter 

Beesie

Yes, it does happen and it has happened to women who post on this board. 

After a bilateral mastectomy, in the best case scenerio (someone who had all DCIS with no invasion), the risk of recurrence or a new BC is down to 1% - 2%.  That means that 1 or 2 women in 100 may have a recurrence or new BC.  For anyone who has a bilateral after a diagnosis of invasive breast cancer, even if the nodes are clear, the risk of recurrence will be somewhat higher because with invasive cancer there is always a possibility that there was lymphatic or vascular invasion that went undetected.   

Sorry, I'm sure that's not what you wanted to hear.  For the most part, anyone who has a bilateral can relax since the likelihood of getting BC again is very small.  But no one can assume that they are completely risk free.

catbert4209

I have had a bilat mastectomy, and my oncologist is keeping me on tamoxifen for the next five years to reduce the chances of recurrence.  Mine was DCIS with no invasion.  Scary, yes, but I feel that I am doing everything I possibly can to stay health.

All the best to you!

Cat 

Beesie

Cat,

That's interesting, because it's actually quite unusual for someone who has a bilateral for DCIS to be prescribed Tamoxifen.  Certainly there is a low risk of local or distant recurrence (about 1% - 2%) as well as a slight risk of a new breast cancer (about 1%) but most oncologists feel that this risk level is sufficiently low that Tamoxifen isn't necessary.  The concern is that the benefit the patient receives from Tamoxifen (in terms of risk reduction) is actually less than the risk they incur by taking Tamoxifen (which has a low risk of serious side effects).  Of course you have to do what makes you feel comfortable, but you may want to read through the following thread from the DCIS forum:

http://community.breastcancer.org/topic/68/conversation/700663?page=1#idx_25

It is different for women who have a bilateral for IDC.  Here it's not unusual at all to be prescribed Tamoxifen.

Hanna60978

Cat, your pathology could be a plausible reason for Tamoxifen.  Something about your DCIS dx still prompted your surgeon to remove 17 nodes and thankfully none were positive.  Since there is unfortunately, a small possiblity for recurrence with bilateral mastectomy - even for DCIS - I think its a good idea you are on Tamoxifen.  True, the percentage is small, but you don't want to be in that very small percentage who recur and there will, unfortunatley, be some who will.  Tamoxifen will provide that extra bit of added protection. I see nothing wrong with that unless you were to have a lower quality of of life while on the medication due to some pronounced side effects.  I've noticed the medical community pendulum seems to swing back and forth as time marches on with regard to treatment.  Five years of Tamoxifen was prescribed for a friend of mine who had bilaterals for pure DCIS over 7 years ago.  Although she did have some minor side effects at first, they were very tolerable and to date, she has had no recurrence.  She keeps her weight down with good diet and exercise, had small saline implants during her bilateral surgery and is very glad she took Tamoxifen.  The protective effects of Tamoxifen are purported to continue for a number of years beyond the time it is taken.  

A physician's decision to recommend Tamoxifen is obviously related to the patients entire picture - and in my friend's case, she met the criteria. I believe its best, within reason, to do everything you can to prevent recurrence. 

hi5

Hi there: 

hmmm..... I thought that tamoxifan was for er/hr+ ...... I had bilateral with IDC.  I had a 1.6 cm tumour; had to have rads and am on tamox for 2 years and then will change to another AI. 

I once spoke with a chatter who had recurrence after bilateral.

colleen42

Bessie,

thanks for all the good information. after my last post about needing tamoxifen, I started reading and reading about my certain cancer (IDC) and your right!  I thought all along I only had DCIS not invasive..i went back to my pathology reports and now realize that tamxofien is probably the best bet for me...as bad as i hate to take it, i dont want a reoccurance either...

anyway,

your so knowledgeable, thank you for answering all my questions throughouly.

Beesie

Colleen, glad that I could help!

hi5, yes Tamoxifen is for those who are ER+/PR+.  Sometimes it will be given to women who are ER+/PR- but if you are ER- then Tamoxifen wouldn't normally be prescribed.  In your case, with a 1.6cm IDC tumor and being ER+, it is pretty much standard treatment to be prescribed Tamoxifen, even after a bilateral, since Tamoxifen is effective at reducing the risk of both local and distant recurrence.

HannaB, I wouldn't agree that it's always best to do everything you can to avoid recurrence.  It all depends on what your actual risk level is, and what risks you incur by taking a particular treatment.  For example, the reason that Tamoxifen is not usually prescribed after a bilateral mastectomy for DCIS is not because of concern about the quality of life side effects that you mention, but because of concern about the more serious side effect risks.  If one's lifetime breast cancer risk is only about 2% (as would be the case for someone who has a bilateral for pure DCIS, regardless of the amount or grade), the benefit from Tamoxifen would be only about 1%.  On the other hand, by taking Tamoxifen for 5 years, one faces a 0.4% - 0.8% increase in risk for uterine cancer, approx. a 1.3% increase in risk for thrombotic events (eg. deep vein thrombosis, stroke), and approx. a 1.5% increase in risk for cataracts.  Of course the actual risk level varies by individual; younger women generally have less risk, older women generally have more risk, and if you have a personal or family history of any of these problems your risk may be substantially higher.  But overall, most oncologists feel that the risk of serious side effects from Tamoxifen outweighs the benefit for DCIS women who've had a bilateral.  To the earlier discussions, however, obviously the situation is very different for someone who had invasive cancer and who therefore has a greater breast cancer risk.  For these women, the benefit from Tamoxifen often can be significantly greater than any risk incurred.

What it comes down to is that Tamoxifen certainly is not a "one size fits all" solution.

Hanna60978

Bessie, I wrote to Cat after looking at her dx above.  

Given that Cat's surgeon took 17 nodes and her exact pathology is unknown by us, I presume her surgeon took those 17 nodes for a good reason - likely the reason for prescribing Tamoxifen in her situation.  True, DCIS = Tamoxifen is not "one size fits all", however DCIS = 17 node dissection is not either. 

After DCIS treatment, there is a small possibility of recurrence - and that recurrence percentage can be further reduced by Tamoxifen - particularly if the woman is a good candidate for it.  Regular visits to the gynocologist are definitely part of the program.  Her oncologist is recommending Tamoxifen and I'm going on the premise he knows her full pathology and history and is not prescribing without good cause.   

In my friend's case, she also met the criteria with bilateral mastectomy for DCIS and 5 years Tamoxifen. She is breast cancer free. I do not know her previous pathology, but her oncologist and surgeons do. Together, they wanted to do everything possible within reason to prevent invasive recurrence.   

Thank goodness for physicians we trust to help guide us through this quagmire of decision making. Ultimately, you do what fits you.

Beesie

Hannah, just to clarify.  I wasn't suggesting to Cat that she not take Tamoxifen - I was merely letting her know that it's usual for an oncologist to prescribe Tamoxifen after a bilateral mastectomy for DCIS.  I provided some facts about DCIS recurrence rates and I suggested to Cat that she look at some information on another thread.  I wasn't recommending one way or the other; I was simply providing information that I thought might be valuable to her. 

Of course we all need to go on the advice of our doctors, but as I'm sure you know, the treatment of breast cancer is far from a precise science.  Sometimes, by having more information and asking different questions, or by going to different doctor for a 2nd opinion, one discovers that the treatment recommendation originally presented actually is one of several options and not the only (or even the best) choice.  

And as you said, I'm not assuming that I know Cat's pathology.  It could very well be that she has IDC in addition to DCIS, in which case the risk/benefit equation for Tamoxifen might be considerably different.  But the fact remains that for DCIS alone, after having a bilateral mastectomy, the risk/benefit assessment for taking Tamoxifen is unlikely to come out in favor of Tamoxifen.  Tamoxifen does provide approx. a 35% recurrence risk reduction for DCIS women, but since the risk after a bilateral is at most 2%, the 35% doesn't amount to much.  That's just the math.  Having said that, I appreciate that some women still prefer to take Tamoxifen so that they can reduce their risk even by this small amount, and if that's important to them, then that's the right decision for them to make.  My interest is only in ensuring that everyone have the information they need to make an educated decision.  Much as we wish that all our doctors would provide this information, every day on this site we see examples where that's unfortunately not the case.  

Hanna60978

True that not all doctors are equally informed - however, your comment that a woman should not do all she can to avoid recurrence appears unsupportive and naive.

Having a wealth of knowledge of the pros and cons of all treatment for breast cancer in all it's presentations is a good thing.  For that reason, statistical knowledge is valuable.  Assuming one should not avail themselves of a drug such as Tamoxifen because she 'only' has a certain percentage of developing a breast cancer according to statistics you present, is not so wonderful if you happen to be one of those who develop another bc.  

It is true there probably are some uninformed physicians who treat with outdated methods.  In most areas, I would hope they are in the minority.  Insofar as that small minority of uninformed physicians is concerned, exercising one's own ability to avail themselves of statistical information is valid to ensure a woman is educated.  Yet, I would not venture into waters that doubt the vast majority of physicians who are treating women today for DCIS or IDC.  Physicians are connected world-wide more so today than ever and I believe most are well-informed and trustworthy.  A woman should exercise her ability to locate a well-informed physician and develop a relationship of mutual respect with that physician.  

As far as your statement that you do not agree a woman should do everything possible to avoid recurrence makes evident that fact you have not experienced a recurrence.  You have been lucky in that you did not take Tamoxifen and have not had a new contralateral breast cancer.  You successfully chose mastectomy as your original treatment and do have a lesser probability of recurrence in the ipsilateral breast than a woman treated with BCT. A new contralateral remains a risk.  A woman treated with BCT for DCIS does have a greater probability of recurrence or new primary and Tamoxifen helps lower than probability.  In addition, pathology is a critical part of the DCIS treatment plan.  You are choosing to do with your body what feels right for you.

Ipsilateral recurrence and new primaries unfortunately do happen, as well as contralateral breast cancer development in women who do not take Tamoxifen after an ipsilateral DCIS first occurence treatment protocol.  

I do believe a woman should do everything she can to prevent an invasive breast cancer.  In the case of Tamoxifen, a woman with certain blood clotting disorders, etc., would contraindicate the prescription.  However, without indication of detrimental outcome or severe side effects that substantially lower quality of life, I would take Tamoxifen to avoid breast cancer after DCIS treatment.  DCIS is a complicated breast cancer presentation.  More is known today about the nature of DCIS in the breast than 10 years ago.  Medical science is a fluid science with treatment recommendations varying as more is learned about this condition over time and trial group surveillance.  The success of Tamoxifen is well-documented over many years.

If it does not hurt the woman to take a medication such as Tamoxifen to prevent an ipsilateral or contralateral bc occurance, and the woman's physician recommends it for reasons only the woman's medical treatment team know in total - then I support taking the medication for insurance.

lollypop59

yes i am from the uk, but i had mx and recon in march, i had four nodules appear in my recon breast had biopsy and it was cancer cells, now i had there removed and the sikicone removed waiting to see my oncolgist on tues so see what treament i need, buy the way i am still on the herecptin.

tohisglory

Hi, Beesie, I was just diagnosed with your exact dx...how are you doing?  any recurrence or serious side effects ?  Hope and pray you are well.

thanks!

rachnick

I'm new to these boards but had to post a reply to your question.  Yes, there is a chance of recurrence of the original cancer, even DCIS.  But the bigger chance is for a new breast cancer to develop.  In fact, the chance is about 10% - only slightly lower than the chance a woman has to get cancer who has never had it.  I'm telling you this from experience.  In 2004, I was diagnosed with DCIS in the right breast.  Since my mother died of breast cancer, I opted for bilateral mastectomies because I thought it would completely eliminate any chance of breast cancer in my future.  None of my doctors told me how much breast tissue is left behind.  They also did not discuss hormone therapy or MRIs in place of mammograms with me.  They just cut me loose after 5 years and said, "Have a nice life."  Last week, I was diagnosed with a new IDC in my right breast.  I have yet to see a surgeon but I have done A LOT of online research, which has made me very angry at how dismissive doctors can be of women who opt for mastectomies after DCIS. 

Please be aware of how high your chances are of a new cancer and insist on tests and second opinions. 

ritza

I've been recovering from a bilateral mx and reconstruction involving 15 hr surgery. Last year treated for dcis w/

partial masectomy followed by radiation 7 wks, then tamoxafin.  But when going in for reduction on opposite

side my breast surgeon was assisting and extra tissue was taken. Turns out more cancer was found by pathology.

mamo showed nothing , nor did 2 biopsies of area. let this be a lesson.  If I had not had the breast surgeon assisting, I would have had my reduction and scar tissue may have prevented any future findings in time.

In conclusion I was told no need for tamoxfin treatment after BMX...