Mucinous Carcinoma of the breast
Comments
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mumo....you can request that your case be reviewed by a tumor board....or you may wish to have a second or third opinion. But remember, with a low Oncotype DX score, it usually means that the risks of chemo outweigh the benefits. Furthermore, there was a recent Japanese study that mentioned that patients who had mucinous breast cancer and received neoadjuvant chemotherapy, that is, chemotherapy BEFORE surgery...did NOT see their tumors significantly shrink. However, following surgery, they did especially well. So it appeared from the study that with a low grade mucinous tumor, chemotherapy didn't give much of a bang for the buck as it did for the more traditional types of breast cancer. If you had a low Oncotype DX score, you probably would benefit more from endocrine therapy. Furthermore...with a large tumor like yours, the fact that you were node negative is an indication that you have a non-aggressive tumor. Usually, patients who have large tumors have node involvement. Regarding the radiation, most patients do well. There was a recent study that patients who did lumpectomies with radiation did slightly better than those patients who did just mastectomies. If your physician is recommending radiation, ask them to explain the reasoning behind it. Also ask for recent studies as well. I think the doctor is recommending it in your case because you had a large tumor. Keep us posted. Good luck! Congrats on the low Oncotype DX score!
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That's the result I'm actually hoping for, no chemo but rads. My tumor was 44mm, no nodes on ultra sounds but obviously that's only 80% correct so need to wait the 3 weeks to find out.
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Thank you both
voraciousreader, I appreciate the information, and I wonder if my medical team are now taking the fact that this is a mucinous tumour into account, together with the low oncotype dx score. The Japanese study you mentioned is very encouraging and puts my mind at rest somewhat... it was always my fear that I would go through chemo for very little benefit and a huge bucketful of risk... I'm so grateful I found this forum and discovered more about mucinous tumours. My concern is the radiotherapy now, which I will do if it's recommended, but I would like to know the reason why.
Mandksmum, we sound as though we have similar situations. I was horrified to find out my lump was so large, but when I found out it was mucinous it made more sense that there were no nodes involved. I have everything crossed that you get the results you are hoping for. I asked for a copy of my pathology report, which I found very useful. Will you be getting the oncotype dx test done? I was told it will be available on the NHS at the end of the summer, a little too late for us unfortunately. Please let us know how you're getting on.
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Congratulations on the great news, Mumofone! Waiting can make us numb. It is hard, you used the word unbearable and I think you described it well. I watched a lot of mindless television while I was waiting and during my recovery from surgeries - all 39 episodes of Arrested Development and every season of Sex and the City!
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Mumofone is that the £2.5k test? Probs not no. Bad enough I'm off work, self employed having to pay full time staff to run my shop.
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Thanks Golden01, it's beginning to sink in now
Mandksmum, it is expensive unfortunately... we were told around £2k (haven't had the bill yet). We decided to do it when the oncologist started recommending chemo.
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<<there was a recent Japanese study that mentioned that patients who had mucinous breast cancer and received neoadjuvant chemotherapy, that is, chemotherapy BEFORE surgery...did NOT see their tumors significantly shrink. However, following surgery, they did especially well >>
VR, what do you mean by "especially well"? My understanding of MC is that it has a very low likelihood of metastizing, so with a low oncotype dx score, what would be the upside of doing chemo following surgery?
Also, is there a link to the japanese study? i need to start reading up as my surgeon as recommended me for chemo post bilateral mastectomy (which I had after having 2 lumpectomies, radiation and a oncotype dx of 11). I am not at all convinced that chemo is the right next step esp since i am pre-menopausal and on tamoxifen
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Breast. 2012 Jun;21(3):289-95. doi: 10.1016/j.breast.2011.12.011. Epub 2012 Jan 25.
The differences in the histological types of breast cancer and the response to neoadjuvant chemotherapy: the relationship between the outcome and the clinicopathological characteristics.
Source
Department of Breast Oncology, National Cancer Center Hospital, 5-1-1, Tsukiji, Chuo-ku, Tokyo 104-0045, Japan.
Abstract
Although effective regimens have been established for invasive ductal carcinoma-not otherwise specified (IDC), the efficacy and prognosis of other minor types of breast cancer are unknown because of their rareness. The clinicopathological features and prognosis of other minor types concerning the response to neoadjuvant chemotherapy (NAC) were evaluated in this study. A total of 562 patients were classified according to the Japanese and the World Health Organization (WHO) classifications, and the number of IDC and other special types (SP) was 500 and 62. The SP patients had a significantly poorer clinicopathological response to NAC and less breast-conservative therapy than those with IDC. According to the WHO classification, mucinous carcinoma, metaplastic carcinomas and apocrine carcinoma also responded poorly, and patients with metaplastic carcinomas and invasive lobular carcinoma had a significantly poorer prognosis. Despite the poor response to chemotherapy, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis. The response to NAC and the prognosis vary for each histological type. For some types, the prognosis was not related to the clinicopathological response to NAC.
BACKGROUND:
In the treatment of breast cancer, neoadjuvant chemotherapy (NAC) has become the standard treatment modality for downstaging purposes. Although effective regimens have been established for the treatment of invasive ductal carcinoma-not otherwise specified (IDC), the data about the efficacy and prognosis for patients with other minor types of breast cancer are insufficient because of the rareness of these tumors. Defining the relationship between each histological type and the clinicopathological response to NAC is essential to optimizing individualized treatment.
METHODS:
We retrospectively evaluated the clinicopathological features and classification of the histological types based on the Japanese and the World Health Organization (WHO) classifications before and after NAC in 562 patients with primary breast cancer who underwent curative treatment after NAC between 1998 and 2008. The prognosis was estimated for each histological type.
RESULTS:
Of the 562 patients, the number of cases of IDC and other special types (SP) was 500 and 62. In the SP group, the clinicopathological response to NAC was significantly poorer, and the patients underwent breast-conservative therapy less frequently than did the IDC patients. According to the WHO classification, mucinous carcinoma, metaplastic carcinomas and apocrine carcinoma responded poorly to NAC. The disease-free survival and overall survival were significantly worse for patients with metaplastic carcinomas (p<0.001 and p<0.001) and with invasive lobular carcinoma (p=0.03 and p<0.001) than other cancers. Despite their poor response to treatment, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis.
CONCLUSIONS:
The response to standardized NAC and prognosis varies for each histological type. For some types, the prognosis was not associated with the clinicopathological response to NAC. Innovative regimens should therefore be investigated for each histological type to achieve the best response.
Copyright © 2011 Elsevier Ltd. All rights reserved.
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I just found out my actual oncotype dx score - it is 18. I would have been more comfortable with a lower score (sigh) but my oncologist has written to say she is not recommending chemo on the basis of this score.
She does suggest that radiotherapy is necessary though, which has totally confused me. I've had a mastectomy and the margins were >10mm on all sides. No node involvement. Some LVI ('evidence of') which was removed during the initial lumpectomy. My mind is churning over again now. I have an appointment to see the oncologist on Wednesday, to discuss this, although the letter says I've already been booked in for the radiotherapy sessions! Does anyone else have experience of this?
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My Oncologist said that chemotherapy does not work for pure mucinous carcinoma in premenapausal women.
Before that I also had a pathologist tell me that there is a school of thought that pure mucinous carcinoma isn't really cancer.
Of course I was told these things and they wouldn't put it into writing...but it is food for thought. Hopefully there will be future studies published to confirm and have more info for us.0 -
Celebrating... finished my last herceptin treatment. No more chemo, no more herceptin! Whoot whoot! Now, if I can just get this tamoxifen behaving better. ~smile~
Reading through your posts, thinking of all of you on this chaotic experience. Besides the research, the decisions and the 'must do's' to heal, I hope you're also getting to do things that lift your spirits. (Art, writing, paddleboarding, camping, grandkids are my things. Lately I work harder at getting spirits lifted, currently on supplement regime to improve moods and kick hair growth back in gear!) Warm thoughts and prayers to all of you.
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Feeling... Congrats on finishing active treatment... I wish you well... Really, really well!
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Thank you, Voracious. ~smile~
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Well it's been 2 weeks post op and still another week tomorrow to wait for results, the waiting is just the worst not knowing if I need more surgery or if I will be able to start next step.
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Mandksmum, I found waiting extremely tedious and frustrating... but it will all happen in good time
. Fingers crossed you will get the results you are hoping for.FeelingtheMagic, congrats from me too! And thank you for reminding us to do uplifting things at these difficult times. It isn't always easy but is important to make the effort. I've found myself writing more, and now I have a craving to paint! Even tiny things (like a walk) can help.
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Mumofone,I'm a life coach and a creativity coach... I've really had to call on that for me. All I can say is small steps, teeny tiny steps are the best best way to 'move along' whether it's getting active, eating better, creating... but especially whatever lifts our spirits... because that will help all the other areas.. Yay you for writing and hope you get to paint. (ps. 'small and crappy' is a good philosophy to start anything creative, it tricks the fears around all the myths about what our creativity is supposed to be and lets us enjoy it)
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You are not alone I had mucinous carcinoma and dcis
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Hi Everyone
This week I'm back to work after 7 months - 9 weeks chemo and remainder of time surgery related. I'm not yet finished herceptin - halfway through, but all good so far. My surgery to replace expander is done and has gone very smoothly - I'm pleased with the results.
My oncologist has been very positive about future prognosis.
My hair is well and truly growing back and is now getting a little wave. I'm feeling stronger with each day.
I had some slight bumps with tamoxifen - anxiety, stomach upset and headache. Mild hot flashes at night. Mostly settled now - 5 weeks in.
Wishing everyone well with their treatment - it does get better.0 -
Aust... Congrats on almost completing active treatment! Glad to hear you are doing well!!! Thoughts and prayers to you and all our sisters on this journey!
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Hi AustJourney, More Congrats. It is most encouraging to see how your progress is going. If it is any assistance my friends who have also had breast cancer and I all had minimal to no side effects within 12 weeks. This was the prediction too of the oncologist and breast cancer specialist as well. While side effects decrease to some extent earlier it is great when they disappear, especially the anxiety it is such a nuisance as it is often not at all logical. Lots of prayers for all you of you whatever stage you are on. Many blessings Tricianne.
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Congrats Austjourney! Glad to hear you're settling into Tamoxifen well and able to get back to work.
I'm still waiting.. re the tamoxifen settling... now at six months... (smile) .. .thought I was settled in, but quirky things going on. .hair all stopped growing, burning skin, anxious, somewhat depressed, joint pain.. bla bla bla. Currently on a regime of supplements to kick that crankiness and other symptoms, which are considered to be related to my metachondria unhappy (our healthy fast growing daily cells.. in layman's terms. Ie: my terms) The supplements are helping tremendously. (recommended by my integrative cancer care doctor.. so all above board, nothing that messes with treatments)
Keep well, dear women!0 -
Hello Everyone,
I am 44. I was diagnosed with a mucinous carcinoma (5cm) June 10. I am still putting together all the information from the path report and don’t completely have all the pieces filled in yet. I’ve tried to do as much research as I can, but I know each person’s case is different and I don’t have all the specifics about my tumor. I saw a surgeon last week. He recommended 3 months of chemo before surgery to see if we can shrink the tumor prior to surgery (to avoid major reconstruction). I see an oncologist next week to discuss her definition of “chemo.” I am naively hoping that it will be just Tamoxifen, but I have a feeling due to the size, that I may end up having a harsher regimen as well. I guess my biggest concern and worry (which no one can really answer) is potential lymph node involvement. I had an MRI with contrast. The surgeon did not seem concerned about lymph nodes, but said that he would biopsy my nodes during surgery (in three months). I know that this type of cancer has a lower rate of metastasis, but I have also read that those statistics are for tumors smaller than 5cm. This site has been so helpful already. I am so glad to have found it. I would really appreciate any input as far as questions I should ask my oncologist next week. I am going to talk to her of course about treatment and the lymph node concern, but don’t know if there is anything I should be sure to ask about as well. I consider myself to be informed and on top of things...but sure dont feel like it in this arena. Thank you for any input.
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Crystal....Sorry to hear about your diagnosis. When you meet with your oncologist next week, please show them this study:
Breast. 2012 Jun;21(3):289-95. doi: 10.1016/j.breast.2011.12.011. Epub 2012 Jan 25.The differences in the histological types of breast cancer and the response to neoadjuvant chemotherapy: the relationship between the outcome and the clinicopathological characteristics.
Source
Department of Breast Oncology, National Cancer Center Hospital, 5-1-1, Tsukiji, Chuo-ku, Tokyo 104-0045, Japan.
Abstract
Although effective regimens have been established for invasive ductal carcinoma-not otherwise specified (IDC), the efficacy and prognosis of other minor types of breast cancer are unknown because of their rareness. The clinicopathological features and prognosis of other minor types concerning the response to neoadjuvant chemotherapy (NAC) were evaluated in this study. A total of 562 patients were classified according to the Japanese and the World Health Organization (WHO) classifications, and the number of IDC and other special types (SP) was 500 and 62. The SP patients had a significantly poorer clinicopathological response to NAC and less breast-conservative therapy than those with IDC. According to the WHO classification, mucinous carcinoma, metaplastic carcinomas and apocrine carcinoma also responded poorly, and patients with metaplastic carcinomas and invasive lobular carcinoma had a significantly poorer prognosis. Despite the poor response to chemotherapy, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis. The response to NAC and the prognosis vary for each histological type. For some types, the prognosis was not related to the clinicopathological response to NAC.
BACKGROUND:
In the treatment of breast cancer, neoadjuvant chemotherapy (NAC) has become the standard treatment modality for downstaging purposes. Although effective regimens have been established for the treatment of invasive ductal carcinoma-not otherwise specified (IDC), the data about the efficacy and prognosis for patients with other minor types of breast cancer are insufficient because of the rareness of these tumors. Defining the relationship between each histological type and the clinicopathological response to NAC is essential to optimizing individualized treatment.
METHODS:
We retrospectively evaluated the clinicopathological features and classification of the histological types based on the Japanese and the World Health Organization (WHO) classifications before and after NAC in 562 patients with primary breast cancer who underwent curative treatment after NAC between 1998 and 2008. The prognosis was estimated for each histological type.
RESULTS:
Of the 562 patients, the number of cases of IDC and other special types (SP) was 500 and 62. In the SP group, the clinicopathological response to NAC was significantly poorer, and the patients underwent breast-conservative therapy less frequently than did the IDC patients. According to the WHO classification, mucinous carcinoma, metaplastic carcinomas and apocrine carcinoma responded poorly to NAC. The disease-free survival and overall survival were significantly worse for patients with metaplastic carcinomas (p<0.001 and p<0.001) and with invasive lobular carcinoma (p=0.03 and p<0.001) than other cancers. Despite their poor response to treatment, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis.
CONCLUSIONS:
The response to standardized NAC and prognosis varies for each histological type. For some types, the prognosis was not associated with the clinicopathological response to NAC. Innovative regimens should therefore be investigated for each histological type to achieve the best response..
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Also find out if your tumor is ER + and whether or not you are HER2 negative. You have a lot of decisions to make. On one hand, your tumor is large and if you want to avoid a mastectomy, having neoadjuvant treatment to try to shrink the tumor is worth considering. Likewise, if you do decide NOT to have neoadjuvant treatment and decide instead to have a lumpectomy or mastectomy....you would be a candidate for the OncotypeDX genetic test to see if you would benefit from chemotherapy....that is if you are ER postive and HER2 negative.
While the NCCN guidelines recommends adjuvant endocrine therapy for mucinous tumors larger than 3 cm, unless you are node positive, the NCCN guidelines do NOT explicitly recommend chemotherapy. Please register at the NCCN website and look at the professional/physician version, page 20, and read about the guidelines that are specific to mucinous and tubular breast cancer.
Good luck. Thoughts and prayers to you!
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Got my op results yesterday, pure mucinous 44mm, grade 1, no nodes, clear margins, no chemo. Start rads in 4 weeks followed by 5 years of tamoxifen.
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Mandksmum....Thanks for the update. Wishing you well with the rest of your active treatment! Glad to hear about your favorable report!!!!! You also might wish to update your signature profile. Looks like you were downgraded to a grade 1!
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voraciousreader: Thank you for the information. I hope that my oncologist is familiar with the article, but will ask for her thoughts. I am getting services at a research hospital. Reviewed my oncologist's bio, which includes breast cancer research with combinations of chemotherapy and farnesyltransferase inhibitors. To what extent any of her research will apply to me is unknown, but at least it might mean that she is exploring favorable combinations based on research.
Mandksmum: Congratulations on your encouraging results!
Be well everyone.
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Hi Mandksmum after your long wait and all the worry that goes with it your results are most encouraging. Blessings on your future treatment.
Hi Crystal R lots of prayers for you as you tackle the next stage of this journey. I too hope that your oncologist is conversant with the article, at least she has an inquiring mind.
Hi Feelingthemagic may those lousy cranky side effects of Tamoxifen fade away quickly, isn't it incredible what hormones do to us. Lots of best wishes as your treatment proceeds.
Hi Voraciousreader, thanks as usual for all your interesting input that helps us all to think it through with current information.
Lots of prayers and blessings Patricia
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Hi everyone,
It has been quite a while since I posted on this site but thought I would check in and let you know my progress with mucinous carcinoma. I was diagnosed with a very large tumor in Dec/04, went through double mast. aggressive chemo, reconstruction, total hyst and 5 years of tamoxifen. Fast forward to today, doing well and off tamoxifen, no real problems to report. 9 yrs cancer free this december. There is hope and a light at the end of the tunnel after BC.
Tina
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Lovely to hear from you DragonladyTina so glad to hear that after all that treatment you are making such good progress. Long may it continue. Many blessings Tricianne
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Tina!!! Happy dance for you!!! May we all continue to celebrate one another's good health!!
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