Mucinous Carcinoma of the breast
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Hello,
Well, we met with the oncologist, and we got a little worse news than we thought. Her oncotype dx score was 24, so they are recommending chemo, with hormone therapy, and radiation. I did request a tumor board, and we are meeting next week to discuss the results (thanks for the advice!).
The way it was explained was that my wife is in the intermediate zone for Oncotype. It is a grey area with benefits, but not a clear cut decision. But because my wife is young and while the ER was postive, the PR was negative or very slightly positive, they recommended she go through chemo. With hormonal therapy (off the top of my head, I don't have the paperwork in hand), she has an 85% chance of remaining clear. Adding in chemo, it would push that to 91-92%. So chemo adds about 6-7%. We were told there is a window for making the decision of three months, after that they won't do it. We are about a month out from surgery. My wife is unsure if she wants to go through with chemo for the added benefit. She's, of course, kind of a wreck with uncertainty. She is really worried about the side effects, and worried that her hair might not ever grow back. I did read her some of the comments which made her feel better, but then she didn't want to hear anymore.
Also, I'd like to get a second opinion from another oncologist, but I'm not sure if my current oncologist would be offended if we asked for one. Is it common to do this? The doctor I'd like to get the opinion from needs a referral from one of her doctors. Any thoughts on that. I know we can't delay because of the time frame.
Thanks again.
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i think the tumor board is the best thing to do right now because you will get a group opinion.
Also ask for the genetic MammaPrint test. Doesn't have the dreaded intermediate category...ask to expedite the results.
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I was wondering if anybody has had a similar experience. I was diagnosed with mucinous carcinoma May 2015, and this May I found another lump. I went through all the tests and had the wire guided biopsy last week. I met with the oncologist and it turned out to be a cyst, not cancer, but filled with mucous. He wasn't sure if the mucous was leftover from the cancer, but said we're not going to do anything different, just monitor the breasts as usual, and see him every 3 months.
Has anybody had cysts with mucous after their diagnosis, and did it stay as nothing or turn into something? I'm happy that it's not cancer, but the mind can't help but wonder about the other factors.
Thanks!
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unbreak....I had mucinous cysts since before and after my diagnosis. In my case they would watch them and just follow them until they would Disappear. I think your team is just being cautious.
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thanks voracious! Everything new and different is always a little unsettling.
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unbreak..before being diagnosed, the radiologist thought one of my cysts looked suspicious and recommended a biopsy. I made a second radiologist appointment and the second doctor disagreed and instead wanted to biopsy a different cyst which ultimately turned out to be cancerous. Since then, I have wondered what would have happened had I agreed to have had the first cyst biopsied as opposed to the second? I think we need to be hyper vigilent because our type of BC is hard to distinguish from normal cysts. I think we need to find the best radiologists and be followed by them. Otherwise we might have too many false positive biopsies and in my case, almost a false negative.
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voraciousre - my surgeon gave me a different treatment option.
She explained it better to me. There was mucin in the tissue which is normally caused by cancer cells, which is why they think I may have a recurrence. However, they found mucin, but no cancer cells, and she doesn't know why.
She is recommending radiation because the original tumor was next to the chest wall. She's bringing this to the tumor board and discussing with my oncologist.
I say I have a 50/50 shot at this in making the right choice. If there is a recurrence, it'd make sense to have radiation, but they can't 100% tell me there was one. If it's just some strange occurence where I have mucin and no cancer, then why put my body through the radiation? It's hard to make a choice with not clear information.
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unbreak...I am glad that the tumor board is reviewing your case. I had a lumpectomy with whole breast radiation. I was offered brachytherapy but declined it. My tumor was on the lower inside quadrant also close to the chest wall.
You can also ask that the pathology specimens be further reviewed at a teaching hospital such as Johns Hopkins..
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After meeting with 4 other oncologists and the radiation oncologists they came to the conclusion that I had a local recurrence. My surgeon is recommending radiation. I'm waiting to get my appointment scheduled with the radiation oncologist to discuss and ask questions. I'll take a look at the article.
Thanks!
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My final pathology slides had shown multiple pools of blank mucin cells. My pathology slides had been reviewed by 4 different breast pathologists at different facilities and none had classified the several empty pools of mucin as definitive BC invasion. Only the pools of mucin containing neoplasm cells had been called out as frank invasion. But the pools of mucin were considered in determining clean margins. Interesting.
However, in addition to the reference links that VR had kindly noted, I do recall reading about mucin extension being some cause for concern. Mucocele -like lesions floating in the stroma is an interesting topic.
If our bodies produce empty mucin cells, rather than actual invasive mucinous carcinoma cells, such pools can potentially offer protective containment of BC vs neoplasm cell spread (my humble opinion).
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I was diagnosed with breast cancer in August but only after my mastectomy in October was it confirmed to be Mucinous carcinoma. I'm yet to find out if mine is pure or mixed but since I spent the first two months following my diagnosis making treatment decisions based on the assumption I had a more common type of cancer I'm feeling a little at sea.I'm due to see my oncologist on Monday to discuss the possibility of chemo as part of my treatment plan. Part of me feels like I want to do it and blow this cancer to kingdom come but part of me is concerned if it's not really necessary. I've already been told that due to node involvement radiotherapy and tamoxifen aren't optional. Under the NHS in the UK they will not fund the Oncotype DX test for me because I was node positive and I simply don't have the £2000 it would cost to have it done privately.There is so little information available about this type of cancer and a lot of it is conflicting especially for younger women (I'm also 38 years young) and it's even harder to findothers with similar Dx based where I am in the UK. I'd be grateful or any advice. Thanks.
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mandy...you might request a second opinion and/ or ask that a tumor board review your case. While chemo isnt often recommended for mucinous...it might be warranted because of your age and node positive. Because it is Grade 2... chemo might be more effective. You might consider ovarian suppression instead along with an aromatase inhibitor.
Read up om the SOFT trial and read the NCCN breast cancer treatment guidelines.
Please keep in mind that most breast cancers...especially mucinous breast cancer are very treatable. Please plan on doing well and stay in touch with us. We are here for you
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Thanks for your response. Whilst I'm grateful not to have to worry about the cost of my treatment as we are lucky to have the NHS it does tend to affect a persons ability to challenge. It's difficult to get proper access to information even in your own file and I know requesting a second opinion will likely tie me up in weeks if not months of bureacracy. I will check out those studies thank you before I see my onc on Monday! I've been told I'll definitely be having radiotherapy followed by Tamoxifen for 10 years, the question mark appears to be only around the chemo. I'll keep you updated.
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Hi everyone,
I am a 45 year old woman who has just been diagnosed with mucinous carcinoma a few days ago. I have met with my breast surgeon and due for another meeting soon before a lumpectomy with sentinal lymph biopsy.
I am rather crosseyed reading up on the materials on this and reading most of everyone's messages and now feel quite positive and now pragmatic about my diagnosis.
I have a few questions yet to fill in the blanks like further testing to make sure what HR/ Her2 status is my tumour, to have the Oncotype test etc.
I was told that its likely I will have radiation therapy and hormonal treatment after.
I already have 5 beautiful children and will not be having anymore children but I am one that is hands on and all over the shop with the kids. I need to ask how radiation affects the body and side effects.
I am happy I found this forum as it makes me happy that there are you guys out there who have gone through it and out the other side.
This diagnosis is shitty for sure and its never the right time with christmas coming up!!!!
I just hope there wont be any surprises during surgery and that its all straight forward!!
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Welcome, Aida. We're so happy you've found us and decided to post, although sorry it has to be for this reason.
Best wishes, and please keep everyone here updated on how you're doing; we're all here to support you!
The Mods
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Hi Mandyc13 & Aida 71, Sad to welcome you to our group of MC sisters but glad you are finding our posts helpful.. I am so healthy these days I hardly think about having had breast cancer but initially it is very scary. My 6 yr Mammogram shows that all is well at this stage. No other side effects. We recently thought I may have endometrial cancer which is a very small risk after having Tamoxifen but although I had 7 possible indicators my womb is very healthy so it was all side effects of coming off hormonal treatment & the risk of having 2 MC cancers, bowel & breast, so all is well on the home front. My 92 year old stepmother died very peacefully a month ago so once we have settled all her business & effects life may become a little easier. She had breast cancer (not MC) 20 years ago & never had side effects even from the old style radiation & died simply of cardiac arrest & old age. Blessings & prayers for you all. Tricianne
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tric...deepest sympathies regarding the passing of your 93 year old stepmom. I am presently visiting my 91 1/2 year old mom who is a 6 year survivor of lung cancer! Like me....she is also a voracious reader and continues to have a pretty decent quality of life.Congrats on your 6 year anniversary! Last week I had my 7th year anniversary! Life is good....
Aida....I breezed thru radiation and was fortunite that the cener was 2 minutes from my home. That said, i did grow a bit tired towards the end..BUT... I continued my activities including my daily walk. Just had to rest a little more than normal. That said...with 5 children....now is the time to line up as much help as possible. Don't be proud and not ask for it! I treated myself gently and appreciated the kind support of the few people who knew I was in active treatment. Forever I shall be grateful.
I wish you well. Keep us posted,
Mandy...knowledge is power. Bring notes from the SOFT study AND read the NCCN guidelines paying close attention to the tubular and mucinous guideline page. Read the footnotes and discussion section at the end of the guidelines. Good luck
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Hi Mandy and aida, I'm sorry you had to join this club, but we have some very knowledgable members who have already given you good advice and information. Tric and VR, congrats on your 6th and 7th anniversaries. So happy for you.
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Thanks for your best wishes agapornis. Its great to be going so well. Blessings Tricianne.
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My best wishes to new mucinous sisters in your treatment plans and congrats to the old for achieving milestone anniversary dates.
Having been a grade 2 "mixed" mucinous patient with a low single-digit Oncotype score, I would only suggest that new ladies PLEASE consider both:
1) 2nd opinion(s) on final pathology
2) MRI scan prior to surgery (to help determine if multi-focal mucinous carcinoma prior to surgery)
I did have multi-focal mucinous in several spots (mostly grade 1 with some grade 2 mixed), which my understanding of multi-focal mucinous is typical for about 38% mucinous patients per a MD Anderson study.
It's best to know if multi-focal mucinous is present prior to starting your surgical planning and treatment plan.
There have been a couple studies relating higher ER % values with lower Oncoptype score values, so I would assume those studies would also apply to mucinous patients also. (This scenario applied in my case.) If somebody knows differently, please comment. Chemo had not been recommended for me with Grade 2 multi-focal mucinous, mixed variant.
Best wishes to all for a nice Thanksgiving holiday!
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we....since only 2% of breast cancers are mucinous...the Oncotype DX test was initially not as strongly validated for mucinous as it was for traditional ER+ HER2 negative early stage node negative disease. Data for one type can not easily be applied for another. That said...one would think there was a corrolation with respect to lower Oncotype scores with higher ER percentages....for years before the genetic test was developed, Mucinous was considered a more favorable type of breast cancer because it USUALLY had a high ER component
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Just an update
I would say that Mucinous is not a good cancer since it spreading . My mom has numerous tiny scattered mets in both lungs. After 4 round of taxol + herceptin they were stable.I feel so depressed at times because was hoping it would be shrinking . By the way she will going for last chemo next week ,not sure if she have to switch treatments after that.
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ora...i am sorry to hear about your mom....i think you misunderstand my point about mucinous. Since the majority of mucinous are highly ER +... then they often respond well to treatment. That said...like your mom, there are some whose mucinous is more aggressive...that is...weakly ER + ...ER -... and a very rare few who are HER 2 positive. There are many effective treatments for most breast cancers. Hopefully your mom's team will find an effective treatment that will control her cancer. I will keep her in my thoughts and prayers...
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I understand your point , sorry ! The hard part for me is "Why does mom's cancer it so difficult to heal while anyone seems doing fairly well"
oh do you any idea about tumor marker ? My mom CA 15-3 tumor marker was up from 16.7 (before chemo ) to 29.7 (blood taken after 4 treatment ) so not sure if Taxol it not working or to soon to tell.
Thank you very much
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ora...please remember during these hard times...where there is life...there is hope....
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20 years since dx!
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