Mucinous Carcinoma of the breast
Comments
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Hi Ariella! I'm so glad you found your way here! Please take time to read these 40 pages there's lots of interesting information, studies etc.
VR, that's a great explanation. My mind just kept thinking well what if they removed the wrong thing and the ALH is still in there! I also like those odds you told Ariella about!
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Sun....we all need to think positively! However, we all need to respect that some of us will recur. We have to be vigilent despite our favorable prognostics, because we are all quite aware, from this thread alone, that recurrences, sadly, do happen.
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Voracious Reader,
Thank you for responding to my post and providing useful information.
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I regret that I made an error with respect to the excellent prognostics. I gave statistics for papillary bc....Nonetheless, the outcomes for mucinous breast cancer are excellent. Keep in mind, when they discuss "survival" and that most women who do get mucinous breast cancer are older, the "survival" ages for mucinous breast cancer patients are close to the "survival" ages for the general female population. That means, patients with mucinous breast cancer will usually die from something else. And with regard to treatment failures, there are some when it comes to mucinous breast cancer, however, the statistics speak for themselves, that the "survival" rates are generally favorable.
http://m.annonc.oxfordjournals.org/content/20/11/1763.fullAgain, I regret the error that I previous posted.
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Hello,
Met with the pathologist today who reassured me that the mucin found in my biopsy with lymphocete infilitrate was B9 and non specific.
That's one thing out of the way!
Thanks for your answers
Alicki
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Voracious Reader, do u know of any stats for younger women (I was 32 at dx) 5cm pure mucinous, no spread to nodes? Here in the uk I'm told I'm a very rare case to be this young and have had mucinous cancer.
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mands....the only statistics that we have on younger patients are almost as rare as the few studies that we have devoted to mucinous breast cancer. That said, the only statistic that spoke to younger patients with mucinous breast cancer was an Asian study that noticed that among mucinous BC patients who identified themselves as Asian, it appeared that that population's presentation of mucinous BC appeared at a decade younger than Caucasians.
Regarding this thread, I do know of a few sisters who were diagnosed in their early 30's. If you read back on this thread, you will note our dear young sister Ralli who was diagnosed in her 30's. She was diagnosed about the same time as I was. Last time she checked in, she was doing well with the exception of having side effects from the Tamoxifen.
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I don't post much, but I have been lurking and reading a lot of voraciousreader's posts. (Thanks for sharing all that you have learned vr!). I was initially diagnosed in February with DCIS with microinvasive mucinous carcinoma. So I read many of Beesie's posts, our DCIS expert. I had a lumpectomy scheduled, but an MRI and subsequent biopsies identified another area of DCIS in another quadrant of the same breast which eliminated the lumpectomy as an option. It also showed a large area of LCIS and ADH in the left breast, so I opted for a bilateral mastectomy with SNB, with the hopes that after surgery I wouldn't even need to have tamoxifen.
The pathology during surgery didn't see any cancer in the sentinel nodes, but unfortunately at my one-week post surgery appointment I was told the final pathology showed the right side had two small mucinous tumors with a micromet in one lymph node. Arghh. I had to wait a couple of extra weeks to see the oncologist my surgeon (who I really like and respect) recommended. He wanted me to have the Oncotype test even though it hasn't been fully validated for mucinous types. But he said usually mucinous tumors are larger and don't spread to the lymph nodes...and even though they are Grade 1, my Ki-67 scores were 15% and 30%, so it would be a good idea to have more information....now I am just waiting. I read through this thread after I received my final pathology and that has helped, but my cancer doesn't seem to be following the rules - ha! I am hoping to get my results (which Genomics has already sent to my MO's office) over the phone, since my next appointment is almost two weeks away. I've been very unproductive today as I wait for a call back.
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grace...the waiting is the hardest part of the journey. Once you get all of your info, hopefully you will be able to make an informed active treatment plan. While the Oncotype DX test is not as strongly validated for our type of cancer, whatever info it does provide should help you when it comes time to make a decision. So far, you do have good prognostics, so hopefully, you will have many good active treatment choices.
I try hard to keep tabs on the published mucinous BC data and post it here. But the data seems to be so limited and general, that it's off little help to our individual cases. If you've read this thread, you will note we have some of the rarest of the rare mucinous BC sisters posting here. Nothing could be more frustrating than to be an outlier of the outliers! Beesie has also posted some great info! She's a knowledgeable powerhouse!
I wish you well too!
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Hello to all of you brave sisters. I have a tamoxifen/alcohol question (I know we probably should not be partaking). Is anyone else becoming a lightweight drinker? I have noticed that I am much more affected by alcohol. Maddie T
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Maddie I haven't drank since my daughters wedding so I can not help you since it was pre tamoxifen. There's a thread though posted in the hormonals section that addresses it though!!
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Thanks Sunshine! I will check it out!
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It seems that somehow I stopped receiving notifications of updates here.. and life and moves and changes had me wondering but not getting here. Here now, to say Hello, and just 'share the love' with each of you. ~smile~
My update is I am doing well.. even doing fine on tamoxifen, but laughed out loud at the mention of tamoxifen and alcohol! Apparently I don't drink much... just last week I had some wine with a nice fellow and within minutes of less than a half a glass, I teased about him testing out my bed!! EEEKKKK! It was funny, after all. But I realize now that there's good chance tamoxifen played a role in my instant drunkeness.Grace3boys, hope all is going well as you learn more about your diagnosis and treatments. As one of women with a 'rare of rare' diagnosis, , I was constantly somehow surprised that there were no real rules for cancer. I wish you well as you go forward!!!
Voracious, much love to you for always being here. You are a rock for me, and I bet, for all of us.
Hugs to each of you! Now, to read back and catch up!
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Austjourney, wondering how you are doing re tamoxifen? I did go off it twice, once for a week, because doctors said, "it couldn't be causing the moods" and I doubted them. My spirits were pretty happy after five days, so I knew tamoxifen was playing havoc. I continued taking it though because I felt less safe off of it... and it improved. I went off it a second time for a month, when I went to train as a sailor on a tall ship.. I figured I need every ounce of energy to pull that off, and I did pull it off. (it was amazing) When I went back on tamo I had a really hard time again,( and was told that "on and off" isn't wise. eek... ) but again, I guess I felt I wasn't 'perfect' in everything else I do to support myself, and felt right about continuing. Somewhere along the way, things switched and I am much more myself (I've been on tamoxifen 1.5 years now) So, that's my story... if it helps you at all!
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Feeling ... Thanks for stopping by and sharing your good news. Thanks for the kind words! Please know that I do think of YOU too! It's sisters like you who comfort me as well! When I was diagnosed this thread was my lifeline! Thanks to the sisters before us, the bits and pieces that I was able to learn from them propelled my learning and understanding! As I learned more and more, I felt the need to have a place for those people like you and I could turn to, to find comfort, support and information about our rare form of cancer. So, here I am, extending a hand and giving comfort, while also receiving strength from sisters like you!
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Thanks Feeling the Magic, the nurse gave me my scores over the phone (24 & 26), so I am expecting chemo. I meet with the onc on Monday, so hopefully I can get the show on the road so I can get this over with... I hate to ruin summer, but it will be easier to do this when the kids aren't in school. (They are 10,12 & 16, so not too needy and we have a great network of friends to help keep them busy). I love that you sailed on a tall ship - we are in Chicago and used to sail quite a bit. Hoping to get out there again next year! Enjoy your summer!
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grace... Thanks for keeping us posted. I'm not surprised that you had high intermediate OncotypeDX scores and decided to do chemo. According to the NCCN guidelines, if you have a mucinous tumor greater than 3 cm or in the lymph nodes, a discussion about doing chemo is advised. I wish you well during active treatment and beyond!
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Thanks VR. My breast surgeon told me if it were her, she would only skip chemo with a low score. My onc said he would want me to do chemo if Oncotype wasn't available to potentially give us more info to make a different decision. (By the way, I went to the NCCN guidelines from one of your posts while I was waiting for my first appointment with the MO - lo and behold it turns out he is the chair of the committee this year! So I felt better about having to wait a couple of weeks for that appointment!)
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Grace...glad you found your way to the NCCN guidelines and were happily surprised to see your doctor's name! I think having confidence in our active treatment plans, which begins by having confidence in our doctors, helps smooth those rough patches on our way to the new normal!
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I can't say alcohol effects me any more than before tamoxifen but maybe cecause I drink wine most days my body is very tolerant lol (need something to lift my spirit through all of this rubbish)
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Hi All. I was recently diagnosed with pure mucinous cancer and I just want to Thank everyone for all the information in the previous 40 pages. Being in Australia i found it comforting that all this information was available. Nobody told me that this type of cancer is favourable - until i brought it to their attention.Im 35. I was diagnosed after a "benign" lump was removed and tested. They found a 2cm, Grade 2, Stage 2 tumor. Other indicators were: -ER 100%, PR 100%, Her2 negative, 0/6 nodes and Ki67-10%.
My 2nd lumpectomy cleared up the residual foci - multiple amounts ranging from 0.5mm to 5mm in size. The report does not state a clear margin was acheived as the tumor was found sitting on my chest muscle - therefore, no more could be removed. However, the surgeon believes no further ops are necessary.
I showed the NCCN guidelines to my oncologist (Thanks Veraciousreader)- stating that they do not recommend Chemo for my type of Cancer. However, despite the evidence shown they still recommended 4x AC Chemo.
Based on Adjuvent - Doing Chemo will improve my survival rate from 87% to 91% and reoccurance rate will improve from 24% to 11%. However, we all known that mucinous cancers in the test pool would have been limited.
I guess im interested in what you all thought. Should I? Shouldnt I? Im really concerned about the effect on my vital organs as i will need to also do Radiation with a boost.
Thanks for reading
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nancy....I would recommend a second opinion AND ask that a "tumor board" review your case. A tumor board is made up of a group of oncologist specialists in a few fields. I would also recommend contacting Johns Hopkins or MD Anderson to review your case. Look at their websites or ask your oncologist to contact them. You are young, so the doctors want to be as aggressive as possible. However, based on your tumor's characteristics, you do have an excellent prognosis. I would also request that you have either the Oncotype DX test or Mammaprint test done on your tumor to determine if you will benefit from chemo. Remember though, the tests are not as strongly validated for our type of breast cancer. Regarding radiation, please don't worry. Most of us who had radiation did well!
Keep us posted! I wish you well. I'm sure once you gather enough info, you will make an informed decision and the journey will get easier from then on.
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Thank you voraciousreader. I did head to those websites and they too cant give me anything more than the oncotype advise you offered.
The only reason I would do chemo is due to my age. Everything else based on the evidence discussed in this forum just doesn't support doing chemo.
Decisions, decisions.
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Nancy....Here is a link with concise, additional information about treatment.
http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5/AllPages#6The above link has not been updated since April. In May, ASCO held it's annual meeting and they discussed preliminary findings of the TEXT and SOFT trials.
http://www.cancer.gov/newscenter/newsfromnci/2014/ASCOSOFTandTEXT
I also think that you misunderstood my recommendation that you contact Johns Hopkins and MD Anderson. I am suggesting that your case have a FORMAL review by one of those centers. Furthermore, is there a problem with getting the OncotypeDX test or Mammaprint test? In cases like yours that the need for chemo is not so black and white, those tests might tip the balance. Likewise, you should have a discussion with your team about ovarian suppression if you haven't already.
Good luck and keep us posted on your decision!
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Good luck Nancy! It's very difficult to make these decisions. I opted, with similar survival rate info not to get chemo. My oncologist felt that with the type of cancer that we have it wasn't worth putting my body through it. I'm taking tamoxifen and tolerating it very well. I am 53 and had a bilateral mastectomy last June. I wish you luck and peace of mind. M
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After 2.5 years on letrozole, one SE is really bothering me and that is short term memory. I feel it is really affecting me in my work. Cancer Math says it is helping me a little over 1% compared to not taking it. This doesn't seem like enough help compared to the SEs. I know I don't need permission to stop, but would love some input.
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Hi Nancy78
I'm a Nancy too and have had pure mucinous carcinoma!
Sorry to hear at your age that you have BC. I
actually met someone through a friend to talk about breast cancer when I was
first diagnosed in 2012.The three of us
met for lunch and believe it or not – she also had pure mucinous breast carcinoma,
but she had it at 32 and they thought it was just a benign lump until she had
it taken out 6 months later.... Due to her age – they went back and she had a
unilateral mastectomy and immediate breast reconstruction (like me). She took tamoxifen for a while <1 year and then
stopped and 20 years later she is still fine. She did not have radiation nor chemo.I recently had been
going thru decisions about chemo and radiation, etc. It’s a tough decision for
anyone. Percentages are percentages and
stats are stats. Do your research, talk to several doctors and as many people
with PMBC as you can - especially since your cancer was sitting on a muscle...I had Drs in
Houston
tell me that when they “missed” lymph involvement (after 3 negative sentinel
nodes and 1 negative axillary node during mastectomy), and me pointing out a firm lymph node
under my arm 5 months previous (they said "oh it’s nothing”) that I had to have
surgery, radiation and chemo. They said my Ki-67 score of 15% was high and that
it was faster growing, less favorable and this was my chance for a cure.....even though it was still pure mucinous, I was premenopausal,
ER+, PR+ and Her2-!I moved to Atlanta (thought I would need family to help me thru the surgery,chemo and rads). Turns out during surgery last month, even though I had 4 reactive nodes and it looked “extensive”
, path report showed the cancer in only 2 of my nodes and
the rest were just doing their job by being reactive and fighting off the
cancer. A re-test on the lymph nodes with cancer showed my Ki-67 score was only
8% (low)and had the previous favorable (ER+ 100%,PR+ 100%, Her-). At my appointment
with my new oncologist in Atlanta this week, he didn’t recommend radiation as it was in only 2
nodes and they only do radiation (after mastectomy) if it is in 4 or more
nodes. He also did not recommend chemo and I said that since my lymph modes
were doing their job that I didn’t want to do anything that would compromise my
immune system. The Dr agreed (in my
case). Now I’ll just be taking tamoxifen
for awhile and deal with the side effects and have scans when needed.I am just glad that
having a rare, favorable cancer allows research papers to be published that can
state that chemo, radiation, tamoxifen, AIs etc will or will not work for mucinous breast carcinoma….Here are some articles
that are food for thought.http://annonc.oxfordjournals.org/content/23/suppl_...
Selected patients with special types of breast cancer (e.g.
pure tubular, cribriform and mucinous tumors) have a limited expected benefit
from preoperative therapy and might receive adjuvant endocrine therapy alone.http://www.wjso.com/content/11/1/139
The St Gallen
guideline for ER-positive breast cancer recommends that chemotherapy should not
be administrated if the tumor is highly endocrine-responsive and has a low risk
of recurrence. When planning systemic therapy for patients with MC, we should
be concerned that ER-rich tumors are more likely to benefit from tamoxifen than
from chemotherapy. When adding chemotherapy to endocrine-based adjuvant
therapy, the benefit of systemic chemotherapy should be considered carefully in
the treatment of these slow-growing tumors.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC368960...
According to the treatment guidelines, adjuvant chemotherapy
is indicated for IDC patients with
lymph node metastases. However, lymph node involvement was not a good
prognostic factor in our study. In our univariate and multivariate analysis of
disease-free survival and overall survival of patients with MC, we found no
pathologic features that were significant prognostic risk factors (Table 2).
Adjuvant hormone therapy was adequate if the patients were hormone receptor-positive.http://www.medscape.com/viewarticle/810842_4
Adjuvant Cytotoxic
ChemotherapyThe Panel was clearly of the opinion that factors arguing
for the inclusion of chemotherapy were histological grade 3 tumours, high
Ki-67, low hormone receptor status, HER2 positivity or triple-negative status,
high 21-gene RS, high-risk 70-gene signature and the involvement of more than
three lymph nodes. Most felt that nodal positivity per se was not an
indication for chemotherapy but very few would forego chemotherapy for patients
with four or more positive nodes. Lymphovascular invasion was not recognized as
an indication, while the Panel was equally divided whether young age (<35
years) was an indication.https://www.womenshealth.gov/publications/our-publ...
Mastectomy —
With simple (total) mastectomy, the surgeon removes the whole breast
that has cancer and possibly some of the lymph nodes under the arm. With modified
radical mastectomy, the whole breast, plus many of the lymph nodes under
the arm, the lining over the chest muscles, and, sometimes, part of the chest
wall muscles are removed.0 -
Hi NLR,
Thanks for sharing your story and research.
I just a have a question, I hope isn't too intrusive...
Was there a second tumor? or was the cancer in the lymph nodes considered the impetus for the second DX?
Was second Dx considered a recurrence?
I am easily confused these days and I have the reading competency of a squirrel right now : )
Thanks
Debra
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Bellydancer...no worries about the confusion-I did not clarify.
About 8 months after my left unilateral mastectomy, I felt a lump low on my left armpit. I already had a scheduled sonogram for my remaining right breast and told them I felt a lump low on my armpit on the left side. They looked at it with the sonogram and said it was nothing...well months later it felt bigger and it was something...
It was as not a recurrence - my first surgeon in Houston said since it was too soon after surgery and pure mucinous that it was missed in the sentinel node biopsy, basically a false-negative even though I had 3 sentinel nodes taken out and another in the armpit-all negative (sliced up in 2mm increments). My new surgeon in Atlanta said that it can skip around nodes as it was low on my axillary chain to the side of the breast below the armpit. He said it was favorable as it was isolated and on the end of the lymph chain. Personally, even though the truth will never be known, I have been telling the Drs that I think it was from my initial core needle biopsy, as it was right behind where they put the needle in to get the tissue sample. They all denied it, but at a party I talked to a pediatric oncologist (made sure he was on his second glass of wine when I talked to him) he told me that it only takes 10 cells on the biopsy needle to seed a tumor and yeah, it could have been what happened to me. PMBC rarely goes to the lymph nodes and for it to skip around like mine is an interesting theory, since I had many reactive nodes and it was described after surgey as extensive-BUT it was pure mucinous, 100% ER+ & 100% PR+ , Her2 - and Ki-67 8% and only in two of my lymph nodes. The remaining reactive nodes were doing their job and staved off the cancer.
Either way, whatever caused it, the cat's out of the bag so to speak and I will have to be vigilant about my diet and exercise, etc. I was before, but now my diet is extremely healthy and I'm happier for it. My skin looks great, I now have an hourglass figure (thanks to my wonderful PS) and can pass for 40 when I am almost 51
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Btw...I used to live in Houston for over 20 years and MD Anderson can be known for their overkill and may be better for fast growing, later stage cancers. I have heard the Sloan Kettering is the place to get 2nd opinions etc if you have mucinous breast carcinoma.
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