Help! Mastectomy or not!?!?

katherineINswitzerland

Hi All,

Thank you in advance for your help with this pressing problem...

I had TN tumor removed last week and when I went in for the follow-up appointment with my surgeon, he told me that the good news was that the margins were clear and that there was no node involvement.  BUT, he had other worrying news.  During the biopsy they found three spots of DCIS which they want to remove next week.  Help!!!!!!  The surgeon does not want to do a mastectomy; he feels that there is no reason at this stage.

My worry is that if they found these "spots", there might be more that did not show up on any of the other tests?  Has anyone else experienced this?  If so, what did you do?

Sigh... 

Worried, hopeful, positive and thankful -- all at once!

Katherine

flash

Did you have any additional testing to see if there were other spots? (MRI, PET, CT)  It's good to question but it's also important to realize that your surgeon has ALL of the information regarding your particular cancer and it is hard to second guess with only part of the information here on the board.

I hope it all works out for you.

barbe1958

If he saw the areas, why didn't he take them out?

katherineINswitzerland

Let's see...  I had an MRI, bone scan, chest x-ray, and liver scan.  He did not take the spots out since he did not spot them; the pathologist found them when checking the margins of my original tumor, the triple negative one.  The troubling thing to me is that the above-mentioned tests revealed nothing.  The surgeon said this is often the case as imaging often misses dcis.  Is that really the case?  The new dcis is grade 3 but the spots seem small...  I am so confused!

barbe1958

If the pathologist found them, then they were out of your breast! I don't blame you for being confused....

ChrissieD

Hi Katherine, Did you ask the surgeon your question about whether there could be more?  It is my understanding that there typically is an area of DCIS when they remove a breast tumor.  In my case it was in the tissue that was removed with the tumor to get clear margins.  This is normal as it is is the cells that then grow into the IDC. 

Just because your surgeon says "he" doesn't think removing your breast is necessary from his perspective, if you have questions or uncertainty you need to talk abou that with him.  The surgical decision is ultimately yours.  Worrying and "what ifs" is not good either.

katherineINswitzerland

Ahhhh... I am confusing not only to myself but everyone else!  Sorry -- my otherwise scatty brain has become even more so under the stress.  I'll begin again...

Found lump. Lump biopsied and found to be grade 3, TN, between 1.4 - 2 cm.  Had MRI, Mammo, ultrasound, chest x-ray, abdo scan and bone scan.  All clear (except for mammo, obviously -- but that only showed the TN tumor, not the DCIS).  Lumpectomy last week.  A few nodes removed.  Path reports came back saying margins and nodes were clear of TN -- BUT they caught the edges of three spots of DCIS.  My surgeons think they are small spots -- but I now have to have surgery to remove them so that THOSE margins can be completely clear as well.. 

I DO have questions.  So many!  And you are all patient to help me answer some of them.  Navigating these waters is so horrible!  I am living in Swtizerland (as an American) and do not speak even passable French, compounding the problems.  I really appreciate your help!

XOXO, Katherine 

barbe1958

Aha! Got it! Yes, I can see why he would recommend a mastectomy as DCIS can hide another tumour as well. Yikes! You have a huge decision on your hands.

You are in my thoughts....please continue to post to this thread so we don't have to chase you all over the boards to find out how you are.

sbmolee

I am still a bit confused...Is your doctor recommending a mastectomy or not recommending?  In the end, it is your decision and I sure hope your doctor will support you. 

cheranthia

Katherine,

Your surgeon is aware of three spots of partial DCIS remaining, you are triple negative, and you said he does NOT recommend mastectomy, right? I have always heard that multifocal cancers are generally treated with a mastectomy. I am also confused that they report clear margins, yet they got the edges of three different spots of DCIS. How is that clear margins?  

What does your oncologist think you should do? I really think you need to consult with an oncologist before you make your decision. Surgeons are not always as informed about TNBC as oncologists. You are truly fortunate to have caught yours early, but since you are triple negative with multiple spots, you need to be absolutely sure they can get it all out with just a re-excision. 

Also, I speak French, so if I can be of any help, feel free to PM me. I will be thinking of you.

Cherie 

TammyLou

You look young.

Mastectomy...actually, bi-lateral, may reduce your risk of recurrence considerably. 

ER negs have TRIPLE the risk of bc in the contralateral than women with ER+ tumors.

I think it is worth considering.

(I would post the link, but this website won't let me paste...It's at www.youngsurvival.org bulletin board under Risk and Genetics Forum..."Receptor Risk Drives Contralateral...)

tl 

tl 

Delilahbear

I had 3 biopsy surgeries for papillomas. The first was about 4 years ago and showed fibrocystic changes and sclerosed papilloma and adenoma. They did lumpectomy and I went on my merry way thinking everything was good. Then last year had intraductal papilloma that started oozing with the least amount of pressure on my left breast. This was another surgery for ductal excission. Again, went on my merry way and had yearly mammo showing not change. Almost 1 year to the day I had the ductal excission, I found the right breast now oozing all over everything and knew right away what it was. Had unilateral mammo and unilateral ultrasound followed by bi-lat MRI that came back bi-rad category 4 suspicious. Again I have not only one biopsy, but 4 wire guided biopsies (1 in left breast and 3 in right) along with 2 ductal excissions in the right. As soon as we found out the results were negative but the pathology dept. suggested that papillomatosis should be my diagnosis and the gen. surgeon said I would be repeating biopsies every year at least, I knew in my heart that there was too much they might be missing and to just do bi-lat mastectomies. I know I sleep better at night knowing that soon all of this will be behind me and that they didn't miss something. The gen. surgeon says she just had a patient who was misdiagnosed 3 years ago and is now facing chemo and radiation due to it so I made the proper decision. My answer to you is to strongly consider the mastectomy now while it may still be manageable.

thenewme

Oh Katherine, you're really in a tough situation!  Is there any possibility of seeing a doctor who speaks English?  A second opinion?  Any available translation services to help out?  Any option to return to the US for treatment? This whole experience is sooo confusing when you do speak the same language - I can't imagine trying to do it in another language! I'm so sorry you have reason to join us here. 

I'm confused too, about how you're considered to have clean margins if they found DCIS at the edges of the specimen - that sounds like positive margins. I wouldn't worry much about the DCIS itself since I think all or most people with IDC also have associated DCIS but it isn't usually mentioned because IDC basically is an invasive extension of DCIS.  I think it's pretty much assumed that IDC patients also have DCIS.  

I would worry about the positive margins, though - or at least clarify for sure why they're saying negative margins with DCIS at the edges.  That sounds like the classic case for positive margins.

Do you know your BRCA status? I definitely agree that you should at least try to see an oncologist in addition to the surgeon.  Triple negative is so stinkin' aggressive and unpredictable that the treatment is often very aggressive upfront since we have no long-term options to us like the hormonal meds.  

Have you checked out www.tnbcfoundation.org ?  It's specifically for triple negative and there is lots of good information there too.

Best of luck and keep us posted!

Meggy

I am very pro-mastectomy.  I agree that we don't really know what was in a breast until removed and fully biopsied.  I agree..talk to an oncologist..better yet get a formal second opinion from a breast cancer clinic like Stanford.  You could probably just send them the file and get an opinion.  It's worth whatever you have to pay. 

katherineINswitzerland

Hi Everyone...

Sorry for the delay in responding.  I had so many appointments with the doctors, the oncologosts and the radiologists that I hardly had time to breath much less get on the computer.  

In the end I went for the second lumpectomy.  The results are in and positive -- margins clear.  I went with this procedure simply becasue my oncologist looked me right in the eye, without my asking her -- and said, "If you were my sister, this is what I would recommend."  That, coupled with the fact that I have had clear scans (including bone, brain, liver and lungs), no node involvement and that I have to wait another two months for the BCRA results to come in (which will ineveitably lead to the mastectomy anyway), made sense.  So, off I went.

I began chemo yesterday and feel like absolute SH*T!  Anyone else out there who is doing FEC and then Taxotere?  Bleh!!!!!!!!!!!!

Thanks again for all of your wise imput. 

Meggy, would you happen to know how I would get in touch with Stanford?  I had never even considered the possibility of contacting a hospital that I could not visit.  It WOULD be worth whatever I have to pay,!!

Love, Katherine  

debrathezebra

Hi Katherine

I have had a double mastectomy for DCIS and IDC. My chemo treatment is 3 x FEC followed by

3 x Taxotere, I have just finished my 3rd FEC Yay!! It got easier every time. My tummy got really gripey and nautious with FEC but I found taking my anti-nausia medication like clockwork and drinking LOTS of water really helped. My nailbeds are a bit bruised and I've lost 1/2 my hair so far!!! I shaved it off after 1st FEC to get a bit of control back and have fuzzy stubble at the moment(cute)  I still have my eyebrows and eyelashes, we will see if the taxotere knocks them off though!  Apparently taxotere is rough on your nails - in Australia they give you a care package before you do Taxotere - it has a revitilizing nail polish to help lesson the damage, they also give you ice gloves to wear when having your infusion to reduce the risk of losing your nails. In some states where ice gloves are not used the ladies put packets of frozen peas on their hands and feet. looks funny but reduces the risk of nail loss and neuropathy considerably. Cheers Deb