Mucinous Carcinoma of the breast
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mared...thanks for the update! I wish you well!
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Thank you. I wish you are doing great with your BC journey and whatever life throws your way.
Have an awesome rest of the week.
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Hi Everyone! This is my first post to this thread. I am 30 yrs old, and was diagnosed 2 days ago. I meet with my team of doctors on Thursday to find out their plans on getting rid of this thing. Also, Thank you everyone for posting information about what you have and are going through. I have not been able to find much information about this diagnosis online. My question is has anyone been able to have kids after going through this? I am dating the man to whom I hope to marry, and I would like to think that children may still be an option in the future. I hope you all are doing well and thank you again. :
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Hi! Aloha! There are quite a few young women who have gone on to have families following a breast cancer diagnosis....on this discussion board there are several threads devoted to young women who have faced the same challenges as you. Please look for those threads. Of course we are here for you as well!
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Thank you voraciousreader! That is the hope that I needed to hear/read. Those dreaded words were not what I wanted hear. However, I'm feeling optimistic. I found out that I'm Her2 + and Estrogen + but progesterone -. I hope to find the course of action on Thursday. I hope everyone is well and has a great week
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Welcome Aloha-There are not too many of us with Mucinous diagnosis that are HER+. I am a bit older than you and already had 3 kids, but my oncologist did discuss with me if I wanted to take measures to preserve my fertility so I am guessing this will be discussed on Thursday. Wishing you all of the best on your journey.
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Hey Chrissy! Sorry it took me so long to reply. I just found out my course of action. I have a ton of appts coming up, but it looks like it will be chemo, surgery, and then radiation. They said my tumor is approx 5 cm and they want to shrink it before surgery, that way it will be a lumpectomy. I'm just bracing myself, and preparing for the next few months. I hope everyone is doing well & feeling well
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I had IDC with mucinous difrentiation
is it mixed ?
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I learned invasive mucinous can be a combination of both mixed mucinous (with conventional IDC-nos) and pure mucinous. For example, I had 8mm pure mucinous adjacent, sitting outside a 30mm encapsulated papillary tumor, but inside the papillary tumor sat both mixed mucin and IDC in a mostly papillary background.
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fadheir....depending on how a pathologist was trained affects how the report is written. I would recommend contacting your medical oncologist and asking whether or not you have pure or mixed. Keep us posted!
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Hi I do hope everyone is keeping well,
I am just writing for thoughts on oophrectomy as treatment.
I am 46yrs old and premenopausal.
I had a 5mm grade 2 pure mucinous carcinoma ( ki67 22% ) attached to 3cm high grade dcis.
er95%/pr60%her 2 - negative ( +1)
Oncotype dx could not be processed due to not enough material.
I started tamoxifen in February . I had an ultrasound which showed a 4cm cyst on my Left ovary- probably related to a past Hx for endometriosis.
I have discussed ooph with onc and she says may be a good idea in my case and I was ok with it until I read that the potential loss of bone density caused by this and ? switching to an AI may make bone metasteses more likely.
I've read it in bone pathology books that the loss of bone density may be related to later development of bonemets- scary.
when I mentioned zometa to the onc she was dismissive of the need for it
surgery booked for next week and don't know what to do
any thoughts appreciated
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Wobbly-if you had that surgery, would they put you on something to help with your bones to try to prevent bone loss? I would ask about that.0 -
hello @peggym:I just want stop by and wish you an everyone well, and to share a link that contains 2062 scientific articles on Mucinous Carcinoma of the Breast.
http://www.ncbi.nlm.nih.gov/pmc/?term=Mucinous+Carcinoma+of+the+breast
I hope these information are helpful to you. Just find the subject title of interests to you. In the meantime, check out the Society for Immunotherapy of Cancer (SITU) to see if there's anything in the works using immunotherapy to treat this type of cancer. Here's their link.
In the interim, you may wish to visit the Society for Immunotherapy of Cancer (SITC) to see if there's anything in the works using immunotherapy to treat this disease. It is current the hot cancer treatment topic. Or, you may wish to have them include you in their mailing list should there are any new development? Here's their link:
P.S. Below VIDEO link talks about the use of immunotherapy in cancer treatment (current hot cancer treatment topic) and fascinating to watch.
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Anyone heard when the TAILOR-X Trial results will be available? Seems like it closed awhile ago.
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A few weeks ago I contacted the group that is assessing the data and was told that the results will be released in Vienna in September AND San Antonio in December. Furthermore, the results are being submitted to The New England Journal of Medicine. That said, the data will be updated through next year and beyond.
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VR - Thank you so very much. I knew you'd know!!
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The reason why I knew was because recently, the date for closing the data was pushed to December 2017. I was confused by that timeline, so I contacted the lead researcher who said that the trial 's collection data would be continued through 2017 BUT the preliminary results will be announced as scheduled, in 2015. Yay!
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Here we go again! I'm 48 years old. Two days ago, I found out that an ultra-sound needle guided biopsy revealed that I had Invasive Mutinous Carcinoma, Grade 1. Judging from the diagnostic mammogram report, I think it is about 1.3 cm. Google tells me that this cancer has a very good prognosis, however, I had DCIS back in 2008 (also on the left side). Had a lumpectomy, five weeks radiation, and took tamoxifen for five years. In 2007, I had ADH that was originally found on my 40 yr. old mammogram. My MRI is tomorrow and I see my oncologist next Tuesday. Not sure what the course of treatment will be or if anything else will turn up on MRI. I'd be fine going on Tamoxifen again because I tolerated it very well. In fact, it almost seems like my only "normal" mammograms have been while I was taking the drug. I have very dense breast tissue. I'm also wondering if a masectomy might be recommend given my history. Anyone else out there have this kind of cancer show up years after a more common type?
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marathon..sorry to hear about your winding journey. Not sure if there are many sisters who had a prior breast cancer before their mucinous BC diagnosis. That said, I do know of one sister in this community who had a prior different BC who developed mucinous BC and later developed a different BC which ultimately progressed to distant metastatic disease.
Good luck and please keep us posted. From what you have told us, it seems that you should do well!
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Hi All, I've been following this thread since the beginning of April. After my LX was diagnosed with pure mucinous cancer. I also had IORT during my surgery. My follow up with my MO was no chemo and consider AIs. My MO followed the below guidelines:
Mucinous Carcinoma of the Breast and AI
If the tumor is smaller than 1 cm, with no cancer or just a very small amount of cancer (a 2-millimeter area or less) in one lymph node: No hormonal therapy or chemotherapy is typically recommended after surgery.
If the tumor is between 1 and 2.9 cm in size, with no cancer or just a very small amount of cancer found in 1 lymph node: Hormonal therapy is often considered as a next treatment, since most mucinous cancers are estrogen- and/or progesterone-receptor positive.If the tumor is 3 cm or larger, with no cancer or just a very small amount of cancer in 1 lymph node: Hormonal therapy is typically recommended after surgery.Mine turned out to be 1.9 cm with no node involvement. ER+100%/ PR+100%. The choice for AI was left up to me. He agreed, if no side effects its added insurance, if side effects impact me and leading an otherwise healthy lifestyle, I can stop. I've been trying Anastrozole now for 3 months. My arthritis has worsened. Some days I feel 92, others just minor. What bothers me more is fatique, depression, and impacts to my mental functioning. (It could be from the fatique and depression.) I am straddling the fence on stopping. I think it would be the best decision in my case, but then fear hits and I stretch it out a little longer. The calculators say it would add 62 days to my life. My chance of reoccurrence is 2-3%. If my risk was higher, I'd definitely stick with it. At present, the quality of life issues don't seem worth it.
Since most of you are ER+, what have you chosen to do? Did your MO say consider or recommend? Thanks for the feedback. I see a few of you have pretty much the diagnosis that I do.
Joanne
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Joanne....sorry to hear about your diagnosis and issues.....what you posted were the NCCN 2015 Breast Cancer Treatment Guidelines (professional version). I'd like to add that the "evidence" for the guideline for pure mucinous AND tubular BC are based on "2B" evidence. That means, the evidence is not as strong as the evidence for other types of BC. The reason why the evidence is weaker is because pure mucinous BC is rare and to have a stronger weight of evidence would be to have many more mucinous breast cancer cases.
Now, with respect to "consider" vs "recommend".... If you go back in time and review previous years' NCCN guidelines and look for a trend....It appears from looking at previous years' guidelines, the trend is moving away from " recommending" more treatment. When I was diagnosed in 2010 the NCCN Guideline "recommended" endocrine therapy for tumors between 1and 3 cms. Subsequent guidelines have said "consider.". So, depending upon when one is diagnosed, the guideline might vary.
That said, if you are having side effect issues, then speak up! Many of us have had issues and having good communication with your team is priceless. I hope you are feeling better soon!
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Thanks Voracious, You continue to be a wealth of information. I have a printed out list of possible side effects that I have gathered from multiple sites and have been tracking the ones I have over time. Some have lessened as my body adjusted; others seem to be increasing. I took my list to my MO with my ratings overtime. He has recommended Tylenol and acupuncture which my insurance won't cover. I am considering asking a second opinion from another MO. I will also be discussing with my PCP this next week.
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Joanne....sounds like a plan! But here are some more suggestions.....have you tried taking the medication at a different time? My MO told me to switch from taking it in the am to bedtime and it diminished my side effects....also....try another brand....
Finally....my MO is extremely conservative and a fear monger. Recently, I had asked if I could consider stopping endocrine therapy because I reached 5 years of therapy and I believed my chance of recurrence was in the single digits. He replied that if I was his wife, he'd RECOMMEND that I continue and try to reach ten years even if the benefit was only 1%! So, I deal with my side effects as best I can. Without a doubt, side effects are no picnic and dealing with other medical issues on top of medication side effects can be very challenging....
Speak to your team and stay in touch. . we are here for you!
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Hi everyone hope you are all doing as well as can be expected, just thought I'd check in as I'm coming up to my 2 year mammo next week so nerves are starting to set in. I do have a question though, my wedding is coming up in February and I really, really do not want to have a period over my wedding and honeymoon, I've waited 20 years for this day and I am not having it ruined. Being er+ is there anything they can give me that will stop them. Remember I'm in UK so probably far behind what you can get in U.S..0
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Mands.....congrats on your engagement! My daughter was recently married and is presently on her honeymoon and had the same question with respect to her period. She consulted her gynocologist and they were able to come up with a plan...I would recommend that you first speak to your MO and then speak to the gyno....
Good luck with your mammo! And, thanks for staying in touch! It really is so nice to hear from our special sisters! ☺☺☺.
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Mandksmum - Wishing clear mammos for you. How exciting to have a wedding to look forward to!
Voracious - I asked my doctor what he would recommend for his wife in the same position. His wife long ago taught him not to try to influence the women in his care other than to deliver the facts as he knows them. He's been doing this for 20 years, is at a NCC Center. I did like his approach. He also backed me in trying it with having the option to stop. I have changed the times, changed the brands. It isn't the pills as I have been tracking, its the lack of estrogen and what it is doing to my body. I do appreciate you sharing what you are doing and your doctor's opinion. That was exactly what I was looking for!
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Just curious. Since ours is a rare form of breast cancer, was anyone asked to be part of a study?
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No one has asked but would volunteer to be part of one.
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MarathonGirl, so sorry you're back again, but please know that you're not alone. I'm curious if your growth-rate mitotic score was high? My original dx began with a small patch of DCIS Grade 3 with necrosis. Some of the higher-grades with strong-mitosis are found to sometimes skip ducts and act covertly (DCIS & invasive papillary, for example). Please insist on MRI.
It took 4 different pathology labs to drill down to a solid final pathology on my slides. What had started as a cyst turned into ductal in situ after an injury, then in situ papillary was upgraded to invasive papillary, and then mucinous and conventional IDC-nst were added into the mix. I was told by a breast pathologist that there is very little difference separating grades 2-3 DCIS, but the comedo-necrosis and mitosis are the strong prognostic factors. It all seems to be very subjective depending upon the pathologist's training.
After the lumpectomies, a double mastectomy is next on my agenda. It's too stressful living like this with these beasts hiding and crafting inside our bodies. Best wishes!
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Our type of breast cancer is being studied at Sloan Kettering. One of their researchers in the Rare Breast Cancer Lab is exclusively studying mucinous breast cancer.They collect samples from their colleagues from all over the world. Furthermore, MO's collect data from their patients with respect to treatment and outcomes and that data is also collected. And finally, the folks who gave us the OncotypeDx score also collect data about us as well. Much of the collection of data and lab samples get shared. When I last met with the Sloan Kettering researchers they told me about how they almost came to blows with some other researchers with respect to getting their hands on the latter's mucinous BC samples. Happily, the researchers were able to come to a solution to the argument. Rest assured, our researchers at Sloan pulled out all the stops to get their hands on those samples!😇😇😇
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