Mucinous Carcinoma of the breast
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Was diagnosed last year at 38 with mucinous carcinoma, stage 2, ER+, PR-, HER2+. 3.5 cm and negative growth in sentinel lypmh node. Had chemo( Carboplatin, docetaxel, Herceptin, perjeta) before surgery. Could only tolerate 4 of 6 rounds before contracting Cdiff. I opted for a bilateral simple mastectomy to avoid radiation. Have been getting Herceptin infusions for almost a year and just started tamoxifen. Had breast expanders put in after surgery for a few months and just had reconstructive surgery 4 days ago (went with saline implants). Will be seeing Oncologist once per month for liver and bone testing for the next few years. Before any treatment I went through IVF to preserve eggs. I don't have any children. Was diagnosed with premature ovarian failure at 38 and out of 7 eggs harvested only 1 became an embryo. Very strange for this all to be happening before 40
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Warm welcome to new MC sisters & best wishes to those in surgical & treatment recovery. It continues to disturb me that the frequency of younger MC patients seems to be growing. My prayers are with you all.
Re: Neuroendocrine features ....
Papillary and neuroendocrine breast lesions: the WHO stance
"There is currently no clinical impact of identifying neuroendocrine differentiation in conventional invasive breast carcinomas, apart from acknowledging its frequent occurrence in subtypes such as the hypercellular variant of mucinous carcinoma and solid papillary carcinoma."
http://onlinelibrary.wiley.com/wol1/doi/10.1111/his.12463/abstract
http://onlinelibrary.wiley.com/doi/10.1111/his.12463/full
WHO Chapter 1 (See pages 23-24+ for MC & NE classification details)
https://www.iarc.fr/en/publications/pdfs-online/pa...
Based on my limited experience, I suspect that few pathologists would actually note NE (NeuroEndocrine) features or NE differentiation of MC cells in pathology reports.... just as most pathologists neglect to note molecular subtype (Luminal A, B, HER2+ etc) or apocrine features, for example. For clarification, would suggest that you quiz your pathologists in detail. Good luck!
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Bosombuddy1 thanks for posting the link to the article, but I thought it was missing a few things. Most importantly, it doesn't list the percentage of women that were compliant with taking tamoxifen, etc that had reoccurrences anyway. That number should be taken out from those that had reoccurrences that were non-compliant.Also it doesn't state who funded the study (drug companies?).
I would like to see an article that shows a list of ways to avoid environmental estrogens to keep estrogen in our bodies low and not have excess estrogen in the first place! Environmental estrogensare everywhere and affecting women, men and children. I.e. Besides breast and prostate cancers; Men with low T, girls getting their periods younger, melanoma etc.
Anyone have any info? (And I am not talking about ANY study funded by ANY drug companies. Too many are biased and they are not looking out for us in the best way.)
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...didn't take long to find this article:
http://www.cancernetwork.com/breast-cancer/recurre..."While the majority of ER-positive breast cancer patients are disease-free after 5 years of adjuvant hormonal therapy, as many as 50% of these patients recur in the decade following completion of their adjuvant treatment."
Hmm-if I remember correctly- the link Bossombuddy1 posted listed 35%-50% had reoccurrences from not being compliant taking Tamoxifen and the like. Comparing the 2 studies then there is a lower risk of reoccurrences if you don't take Tamoxifen or are non compliant?
....sigh. damned if you do and damned if you don't. Which 50% am I? I think we all want to know.
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I was diagnosed with mucinous (mixed, but primarily mucinous) in 2012. Age 48.Everyone on my team said there was almost no chance it would recur. Well, in 2014 I had a local recurrence, got chemo and radiation took my tamoxifen religiously, went through a second reconstruction process. One month after I was done with reconstruction I was diagnosed with Mets to the bone and liver. It is considered oligometastaic, so hopefully that will give me more time. They did SBRT on all three Mets and the hope is I will be NED status for quite some time. I am on anastrozole and Ibrance. Don’t get complacent about mucinous! It is often undertreated.
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HI Zipmonk ;
My mother was diagnosed with metastatic mucinous to lungs for a year ago . She has never been NED but still under control with good quality of life.
I wish you the best of luck with your treatmen
Hugs.
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Good Evening everyone sending you all warm hugs from the Caribbean.
Tomorrow is 14days after my mastectomy and I want to know what to expect regarding the removal of the drains. Does it hurt? Not sure what to expect.
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I had no idea it could be so painful! There was no warning. The nurse practitioner asked me to start breathing on the count of 3 and when I exhaled on one of the counts, she yanked it out with such force I screamed. It was soooo painful! I had to rest for a while before she attempted the other side.
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Dark 13---I had the opposite experience. Both were pulled quickly and with minimal discomfort. I think it's like getting an IV put in....some people are good at it and some aren't! Hopefully you get one who's done the removal a lot and is good at it!
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Thanks for the all responses. You ladies have helped me a lot as there really is no one here for me to ask. What I want to know now is how to care for the scar. I have the stitches that have to melt away. Not sure how long that takes. Anyhoo, once the bandage is off and i'm bathing can I soap the area? Can I put oil on it and if yes what type of oil and how soon can I put it. The area is kinda tight is there anything I can do now or do I have to wait till the stitches melt away. Is there a thread that talk about theses things. Not sure if i'm posting in the right place.
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Hi Dark13, I would contact your Breast Care Nurse or M.D. about your concerns. Please ask your nurse for a set of post-surgery instructions.
By the way, I had no pain whatsoever during the zapping or pulling out of my 4 drains.... good luck.
A patient's body sometimes does not like dissolving sutures or glue, so you are wise to use care until you speak to your doctor's office. Ask your doctor's office about possibly using a little aloe vera or cortisone if your incision is itchy. If you have any signs of infection, please seek care immediately. I hope everyone is doing better. You all remain in my thoughts & prayers.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5639333/#!po=15.6250
Palliative surgery for giant mucinous carcinoma of the breast in an elderly patient: A rare case report
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Diagnosed with Mucinous carcinoma ER+ & HER 2+ at 38 yrs. Did chemo, Herceptin for 1yr, and will be on tamoxifen for 5 yrs. I chose to have a bilateral mastectomy for piece of mind and reconstruction with saline implants. I went through IVF right after breast cancer diagnosis and was diagnosed with premature ovarian failure ( two blows in one month) . Out of 7 eggs only 1 matured into an embryo. Doctor said the two weren't connected but, I'm not sure
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Wow, that incredibly large tumor wasn't associated with distant metastasis? I also found it interesting that
1) the doctors didn't remove the positive lymph nodes, and
2) "Generally, MBC is potentially resistant to chemotherapy or radiotherapy (1,2,4). The combination of chemotherapy and radiation therapy with axillary dissection is infrequently selected, even in locally advanced MBC, and we recommend that it is avoided."
Am I reading this correctly --- radiotherapy is not effective for mucinous carcinoma? Had I just done the lumpectomy, radiotherapy would have been a waste of time?
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sun....i am sorry that at a young age you are dealing with such heavy issues. I can’t speak to a possible association between the two. I hope, going forward, better patterns will emerge once the digital revolution becomes more commonplace and researchers and clinicians do a better job at documentation...
That said, I was recently diagnosed with Elhers Danlos Syndrome, classic form. A genetic defect causes an error in the way my body makes collegen causing all kinds of medical issues. Before my diagnosis, I had always wondered if all of my orthopedic issues were connected. Most doctors would just shrug their shoulders and tell me that it was just coincidental....then, when I had my collapsed lung and other organ issues, I was told I just had bad luck. Well, now I know all my issues weren’t coincidental or bad luck...I have an underlying genetic disorder! I sometimes think I could have been diagnosed earlier had one doctor been more interested in connecting the dots...but sadly, that hadn’t happened. I was the one who figured it out. Long story....bottom line...i feel better now and have rewritten in my mind my life’s narrative.....
I wish you well
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2) "Generally, MBC is potentially resistant to chemotherapy or radiotherapy (1,2,4). The combination of chemotherapy and radiation therapy with axillary dissection is infrequently selected, even in locally advanced MBC, and we recommend that it is avoided."
Hmm, nice catch BB101, very interesting... See also: https://www.medscape.com/viewarticle/714088
Also google the following:
Radiation generates cancer stem cells UCLA. Best wishes to all and Happy Thanksgiving.
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I was recently diagnosed with colloid carcinoma to my right breast after having the area aspirated. I am now waiting for my core biopsies this next Friday. Mammogram and ultrasound showed an area on the left side as well so biopsies to both and also ultrasound to my underarm area on the right side. My doctor also told me this is the best kind of cancer to have if you have cancer. I am 48 years old and no signs of menopause. There seems to be a high percentage of women on here who are very young, in their 30s, which is alarming to me since I read it is most common in post menopausal women. It has been most helpful to me to read all of your stories!
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Hi tessieb1904 Sorry to hear that you need to post on here but you are in good company. Yes as you say the literature says MC generally hits us post menopausal women I was 68 years old. You are right in that there are more younger women on this website. Maybe the use of technology is partly the reason, more younger ones research MC and post about their progress. So prayers especially for you younger ones that all progresses well. I am 7 years clear of cancer having just had by 2017 breast mammogram and all is well and in general I am in excellent health. Blessings Tricianne
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tricianne...glad to hear you are doing well! I am coming up on 8 years and all is well!
Tess....i was 53 and pre-menopausal when diagnosed. Ovarian suppression was a part of my treatment protocol....you are welcome to join us on this journey....so please feel free to post and keep us updated....we all are here for you and one another....
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Thanks ladies for your welcoming and supportive words. It makes me feel a lot better being on this site and hearing from others who are going through or have gone through the same. I am so happy that you are both doing so well!
Voraciousreader, what is ovarian suppression? In 2011 I had a cyst removed from my ovary. At that time it was found that I have endometriosis. I have also been told, many years ago, that I have cysts on my liver. Now I am worried that this may have spread elsewhere since I had had the breast cysts since in my late 20s and this is what has happened to those areas. I am supposed to have a PET scan yet, still waiting on a call for that appointment.
Now to wait for the core biopsies and those results. Whether I have the pure type or mixed, time will tell. This waiting is the hardest part but I am thankful that things are moving fairly quickly with the healthcare system so I cannot complain. I will keep you posted! Best wishes to everyone on here!
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The above link explains most of the current studies regarding ovarian suppression. Ovarian suppression is accomplished via the removal of the ovaries or chemicals, in the form of injections.
While you are waiting for a treatment plan, I highly recommend you reading the NCCN breast cancer treatment guidelines that are found on their website. They have a page that specifically discusses treatment for Mucinous and Tubular breast cancer.
You might also read the ASCO guidelines as well.
That said, the above link that discusses the ASCO recommendation is a great primer
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regarding cysts....cysts like to grow on all parts of our bodies....please try not to sweat too much.....i know the time between diagnosis and treatment can be extremely stressful and often our minds will go to a very dark place....
For the record, during my youth, I had a large ovarian cyst removed.
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Thank you voraciousreader, for all of this very beneficial information. I will certainly do all of the research and read up on everything. Greatly appreciated. The dark place you mention, is a place I find myself at every night. As the days go by though, since my preliminary diagnosis, I do think I am slowly finding acceptance and the need to be positive. I asked my husband today what he would like for Christmas....he said for me to get through this and be healthy again....it made me realize that no matter what I have to go through in the upcoming months, that I will do anything to reach that goal so I can have many years together with him.
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Tess...sleep well knowing you love and are loved. you are blessed
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Happy announcement: Officially finished hormonal treatments a few weeks ago - 5 years tamoxifen/exemestane. Onc says there no statistics to say I need to continue. I'm going with that. Body aches improving already, brain a little less foggy. Phew!
Re the posts above about chemo and radiation for mucinous. When diagnosed and chemo recommended, I had already learned that those treatments weren't considered effective. However, because the pathology showed HER2+, chemo was recommended as a necessary part of the herceptin treatments. Almost six years later, I don't even want to know if that's no longer a recommendation! It was all do-able. Not fun, but do-able.
Healing wishes to all of you!0 -
congrats feeling! What good news! Hearing good news from our aisters brings true joy to my heart. With a new year on the horizon...i want to wish everyone well in the year that lays ahead. May we all only enjoy good surprises
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Congratulations Feelingthemagic for getting to the 5yr mark & no further tamoxifen etc with my specialist I made the same decision at the 5 year mark. Voraciousreader I have only just comprehended that you have Elhers Danlos Syndrome (classic) no wonder you have had all those orthopaedic issues. I have a friend who has the severe variety so have an idea of the hassles it causes. Good news on the coming 8 year marker. While I get onto the website infrequently these days, too much other life going on, I think of all my MC sisters each time I sit at the computer. I remember the days when I counted on your replies. Tessieb we will shine whatever light we can into the dark places that we have experienced that our minds go into in this process. Prayers for you all.
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https://www.ncbi.nlm.nih.gov/pubmed/29220097
Invasive Mucinous Carcinoma of the Breast and Response Patterns after Neoadjuvant Chemotherapy(NAC).
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https://www.ncbi.nlm.nih.gov/pubmed/29202609
The ability of PAM50 risk of recurrence score to predict 10-year distant recurrence in hormone receptor-positive postmenopausal women with special histological subtypes.
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Obsolete/Voracious,
I'm slowly working my way through the latest links and articles. It's been such a busy time! I checked out that Google search and I got this:
Now, researchers with the UCLA Department of Radiation Oncology at UCLA'sJonsson Comprehensive Cancer Center report for the first time that radiationtreatment, despite killing half of all tumor cells during every treatment, transforms other cancer cells into treatment-resistant breast cancer stem cells.
So scary! I can't even begin to wrap my head around all of this. There is a very fine balance to treatment choices and it very quickly becomes overwhelming. I'm reminded of the medical motto "do no harm." Where do we draw the line?
I can't remember if this has been covered...but what exactly does acellular mucin pools mean? Is it similar to atypical ductal hyperplasia where the cells are still in the early stages?
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