prophylactic breast found to have cancer !

kmacrone

Has anyone ever had this occur? Went in on monday for a bilaterial mastectomy for I was diagnosed with IDC in right breast ,stage 1 grade 1 sentinel biopsy done last week and nodes were clear...opted for mastectomy for I was the last of my 4 girl cousins to get breast cancer and one of my cousins deceased from it at age 36 so I always said if I ever got breast cancer I would have a bilateral mastectomy for my cousin who deceased only had a lumpectomy and it returned 4 years later in her bones. I was shocked when my breast surgeon called me today to tell me that pathology found breast cancer in my left breast too! I can't find anything on line regarding others experiencing this so I am hoping someone can let me know if they have!

Crescent5

My cancer was found in the pathology from a prophylactic double mastectomy. It's pretty crazy, right? Being diagnosed after it's gone. It took my head a few weeks to catch up to the news. I have an immense respect for my intuition now

I'm sorry about your diagnosis! Best of luck to you.

Englishmummy

I was not diagnosed under prophylactic; I knew I had a bilateral dx from the onset. You must be reeling, I know I was. I just wanted to let you know you are not alone, there are quite a few gals here with lesions on both sides. I'd like to invite you over to the bilateral thread if you would like?

https://community.breastcancer.org/forum/109/topic...

Stay strong!

kmacrone

wow! Glad to know I am not alone! I am trying to wrap my head around this ! May I ask if they then had to go back and do a sentinel node biopsy on the side they discovered the cancer after double mastectomy? I did have a sentinel node on the side we knew about but now that we got this shocker from pathology on other breast AFTER mastectomy will they have to do a sentinel node biopsy on that side now too? I am sick of being cut !

kmacrone

Thank you ! I would love to join the bilateral thread! Also are you having a lot of side effects with the Tamoxifen?

MelissaDallas

kmacrone, once the mastectomy is done they can't do a sentinel node biopsy.

Englishmummy

Come on over!

I am having NO Side effects from Tamoxifen and I have been taking it close to 4 months - my onc told me that 80% of women tolerate it fairly well so don't be afraid, remember we always hear the negatives, few people post when it positive. The biggest thing for me is my period (which I never had any problems with anyway) is now very far apart, only 2 days long and very light, which some may view as a bonus.....for me it is weird, as I am only 41 and had no signs of being perimenopausal... but I'll take it! Infact, I feel calmer inside since taking the Tamoxifen - strange but true. Side effects from T are sometimes accumulative so they could develop down the road, but I'll face that if/when it happens. I do plan on having a TV Ultrasound every year with my pap (I did it this year, before I started the T to get a baseline).

Excuse the 20 questions: Is your pathology the same on both sides? Are you having genetic testing done? I did mine - I have no family history of BC and little of cancer in general but felt compelled to do it for my children.

You must be tired of being cut, but turn it around and think that if it could hide in the breast, it is possible it could hide in nodes and you are better to be safe than sorry, if they decide to do an ALND. Your surgeon will go over whether or not they will need to do that but if he does not be sure to ask. I am trying to be realistic not scare-mongering. Thank goodness you did the Bmx. I believe in positive thinking and imagery, it is a nuisance if you have to go back in, but it is for good reason.

I am so sorry this is happening to you, but it is doable, you can do it. Oh, one more thing...don't google - bilateral information is mostly out dated.

I'll add this to my favourites so I can follow your progress if you decide not to pop over the Bi-lateral thread.

kmacrone

Thanks for your quick response! wow! now that scares me.... How will I ever know if my nodes are clear on that side??? Scary!

kmacrone

Hi!

Thanks for responding so quickly! My head is spinning! I am not sure what pathology is of the "new" cancer on my left side. I have an appt to see breast surgeon on Tuesday where he will have all the Path reports... Yesterday he just called to tell me that Pathology called him to advise him that left breast had cancer too but he said he did not have full report but they said it was very small... Still very small can be a higher grade and that scares me! I am assuming that they will also have oncotype and BRCA testing done also and that should be in my pathology report I get on Tuesday... Maybe I am assuming too much but is it protocol to do all that? My breast surgeon never discussed with me what testing was going to be done after mastectomy. He just said when I was discharged this past Monday that he set up an appointment for me to come in on Tuesday Oct 6th... I want ALL testing done! I have a 13 year old daughter that I worry about...My original Pathology report from my right breast was :

Invasive ductal carcinoma grade 1 measuring 0.2 cm in greatest tissue extension Atypical Lobular Hyperlasia

Nottingham histologic score is (1+2+1=4)

Estrogen Receptors (ER) 30% positive

Progesterone Receptors (PR) 5% positive

HER 2= Negative

I am so glad to hear you are having no side effects on Tamoxifen... That makes me

I am sad to hear from MelissDall that I cannot have a sentinel node biopsy on the "new" discovered cancer side since I just had mastectomy... How will I know they are clear or not? I am so scared right now... Was wrapping my arms around the fact I had caner and was through the surgery and now this! Feels so good to find a support group that understands!

Thank you !

Gully

Kamacrone,

Same exact thing happened to me! Cancer known in left. (IDC) Neg ultrasound and biopsy in right done due to calcifications. Chose to do BMX anyway because it just didn't feel right not to. BAM surprise IDC on the right as well! They did not do a sentinel node on the right because everything came back neg. My MO wanted me to have another surgery to check called an axillary lymph node dissection. Its were they take all of the level 1 nodes out to check for cancer. My BS disagreed with him and said if I wanted it that I needed to get another surgeon to do it. I opted out! I chose to do four founds of TC instead based on a questionable oncotype DX of 19 on the left and unknown nodes on the right (Oncotype dx 5 ) and a "young age" of 45. As someone else said I don't think its as rare as they say. You are not alone at all! Good luck with your decisions.

Gully

Gully

Also I am doing great on Tamoxifen. No side affects other than menopause induced from the chemo!

kmacrone

Unreal! So nice to know I am not alone! I am 51 years old... I am so glad to hear you are doing great on Tamoxifen! did you do the Chemo because you were not sure if cancer was in nodes on right side? Was the option to do the axillary lymph node dissection (and find another surgeon) or do chemo? Just trying to figure out what my options will be so I can do research and be informed! This second diagnosis sent my head spinning! and there is not a lot on line about bilateral breast cancer and what is there is very old! I thought I had it all figured out and under control and was getting ok with my first diagnosis and so glad to be over the surgery and then this! I guess you can't control cancer! was your cancer in second breast a totally separate cancer then the first or was it a metastasis from the first?

Thanks for your responses they do comfort me to know I am not alone!

Hopeful82014

Kmacrone - I know at least 2 other woman who've had the same experience of finding cancer in the prophylactic breast. It may be statistically rare but not in my experience.

I want to give you a heads up that it's HIGHLY unlikely that the Oncotype info will be available by Tuesday. That testing is done by one single company, rather than a local pathology lab and usually takes about 2 weeks from the time it's submitted. Yes, another wait for yet another piece of the puzzle, I'm sorry to say.

kmacrone

1. I am glad I found this site to know it is not as uncommon as I thought! Thx for the heads up on the oncotype.. I always like to know ahead of time so I'm not upset when I get there and learn its not available!!! This waiting game to determine the course of my life is more painful then surgery

Gully

Kmacrone,

The cancers are considered different primary cancers.

Actually, I went to Dana Farber in Boston for a second opinion! They felt that the ALND was not necessary given the second cancer was small (7mm) grade 1 and highly ER/PR + They sent my case however to their tumor board though because I had Lymphovascular invasion on the left with a 1.2 cm highly ER/PR + lesion and focal invasion on the right) They considered suggesting that I have bilateral radiation to deal with the LVI. In the end they decided that radiation was not needed and left it up to me what to do as far as chemo. They gave me several options 1) Just do Tamoxifen for 10 years , 2) do Tamoxifen and another drug to shut down my ovaries.. or 3) Go with an aggressive plan of four rounds of TC because of my age (which would most likely shut down my ovaries) followed by Tamoxifen or an AI.

I have three kiddos that need me so I chose to do the aggressive plan just in case some of those cells escaped and the fact that we did not know the actual status of the lymph nodes on the right. I was also concerned that I would have intolerable side effects from Tami and if that was the only treatment it would make me nervous. (They said the odds were in my favor that the nodes were negative) We will never know.

After a long painful decision process I chose option three. I have no regrets and sleep better at night knowing that I did all I could. Maybe it helped ,maybe it didn't, no way to know.....the ugly truth is there is no right answer or correct treatment. We are all different and so is our cancer...so I just went with my gut and I don't look back!

kmacrone

Thank you for your response! I have 3 kiddos all under the age of 17 and my youngest is a girl who is 13 so they do need me and I will go as aggressive as I can ! I don't want to look back either but wish they would have done an MRI on my left breast when I was diagnosed with BC on my right and then I wouldn't be playing a guessing game but You have the right attitude ... Look forward not backwards! Thx for sharing your journey ... Can't say enough how great it feels to not feel alone!

BarredOwl

Hi kmacrone:

I also had bilateral breast cancer, but it was known from biopsies in advance. I note that tumor tissue is not routinely tested for "BRCA". Genetic testing typically uses a sample of normal tissue (e.g., blood), which would be considered more reflective of whether normal cells, such as germ cells (eggs), might carry a mutation.

If you are wondering whether you might have a genetic predisposition to cancer due to a pathogenic mutation in a gene such as BRCA1 or BRCA2, or other genes (e.g., CDH1, PTEN, TP53, etc.), you can request a referral to a Genetic Counselor. They are trained in genetic and familial risk assessment, and can discuss with you the types of genetic testing available, the availability of insurance coverage in your case, and the pros and cons of testing.

BarredOwl

kmacrone

Thanks for the info ! I guess I have a lot to learn navigating this cancer maze... I have to stop assuming and start taking control... Just from todays posts with all of you I have a list of great questions to go to my Breast Surgeon with on Tuesday. ... Are you currently taking hormonal therapy?

dtad

Just curious if you had a pre operative breast MRI?

BarredOwl

Hi kmacrone:

I was 52 at diagnosis and premenopausal, but decided not to take tamoxifen. I don't have children, and for me personally, the estimated risk reduction potentially achievable, didn't outweigh the risks of serious complications enough. Because I was pre-menopausal, in order to take an aromatase inhibitor ("AI"), I would also have needed to either surgically remove both ovaries or knock out their function with irradiation or a second drug (ovarian ablation or suppression). At the time, my MO was not keen on it, although there have been some new study results since then. I routinely engage in second-guessing myself on that decision!

BarredOwl

---

52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative; Bilateral mastectomy and SNB without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

kmacrone

No I did not ... Is that something that should have routinely been done

kmacrone

Hi Barred owl!

That is the problem so many decisions to be made and so many differing opinions ... I feel like my head is going to explode ... I have no idea what stage , type, grade, etcetera they found during my mastectomy on Monday in my left breast.. The one I was calling the "good" breast until now! My mind is racing ... I finally thought by going through this surgery I was on the right path ... Now I don't even know what my path is... I feel crazed!!! I know we can't look back and the decisions we make are made for a reason! I am a control freak and I have never felt more out of control then I do right now! Thx for sharing your journey

BarredOwl

Hi kmacrone:

I will keep hoping that the "left" is still the "good" breast! Keep us posted.

BarredOwl

kmacrone

Thanks! I like the way you think!!!

kmacrone

Went to BC today and got my tubes out ! I felt no pain at all with removing the tubes which was wonderful based on all I read about how painful it can be... The left prophylactic breast has DCIS and Atypical lobular hyperplasia... waiting on BRACA testing and Oncotype results to figure out treatment plan. will also send my case to the tumor review board for input. feeling better that the left breast was not as bad as the right breast but still in shock over the last 6 weeks of my life! though I am grateful to be alive and on the right path to ridding cancer from my world!

BarredOwl

Hi kmacrone:

Thanks for the update. Glad the surgery went well, and I am very glad the pathology shows the left is still the "good" breast.

BarredOwl

Englishmummy

Glad that you are feeling more at ease and it was a pain free removal! Keep us posted on your results. Hugs.

kmacrone

I still love the way you think!!!

Thx!!

kmacrone

thank you!!! Will update all as soon as I get results! Thx for the support!!!!

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