Mucinous Carcinoma of the breast
Comments
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DragonladyTina - Thanks for your inspiring words. I'm just two years into the tunnel so knowing the light is coming helps a lot.
VR - Thanks as always for your research and information. I appreciate it more than words can say.
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DragonladyTina - Thank your for your post. You give me hope. My mucinous lump was also very big.
VR - I have always a smile on my lipps when I read your posts. It´s a good feeling knowing that you are here.
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Crystal R
I had pure mucinous carcinoma with the tumor being 3cm removed along with a mastectomy Jan 30th, 2013. My oncologist said that chemotherapy does NOT work for pure mucinous carcinoma as it grows too slow. It will kill of fast growing cells - like hair/skin cells but not the mucinous tumor cells. It was the opinion on my breast surgeon that I had the tumor for quite a long time and looking back at my mammography film from 2008 the area that they looked at for a sonogram looked the same as the mamo film done 2012! So I probably had this for at least 4 years before it was discovered. I had a proactive Gyno who ordered a sonagram (my first) and that is how they found the cancer.
I would advise on getting a second opinion before you start chemo before surgery.
I chose a mastectomy since the location of the tumor was under my nipple and it had to go along with a big chunk of my size A breast. It was a cut and cure
my reconstruction with implants is like skiing a blue/black hill, (tricky with unexpected small bad events) but I am almost done.0 -
My understanding also was that I wouldn't be doing chemo... until I was diagnosed with Her2+ , which potentially makes mucinous cancer more aggressive, so I did chemo and herceptin treatments. (I say 'potentially' because there's not a lot of info on mucinous with her2+.) A second opinion on any cancer, but especially 'rare' is invaluable. I was very happy my doctors collaborated to choose the best treatment options after I questioned everything.
For those of you going into active treatments... wishes for the least side effects and great success. And thanks Dragonlady for updating us... so we can all smile and celebrate!
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Hi All,
Glad that I could perhaps make even one girl with mucinous feel a little bit better, when I was diagnosed there was not too much information out there and I would glean whatever scrap of info I could grab on to. The oncologist at my cancer center did not have a lot of dealing with pure mucinous carcinoma so he consulted an oncologist at MD Anderson in Texas who shed some light on the subject and we were guided by his recommendations which actually were pretty close to our cancer center recommendations. Now they are reporting that this type of Ca does not respond well to chemo, I try not to sit and worry about the naysayers, what's done is done and I can't take the chemo back at this point and I feel like I hit it hard the first time which, in my mind is a big plus for me.
Tina xo
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Hi Everyone
Just a checkin to enquire how those who returned to work got on. I am now 3 weeks into my return and have been doing 2 days out of a normal 4 day week. So far I really haven't had anything productive to work on, have meet with fierce opposition from the contractor doing my old role and people really don't seem to know what to say about my recent health issue - admittedly I used to have long blonde hair and now have a short brunette pixie. My return hasn't been the positive distraction expected - any thoughts/strategies from others. I'm wondering if I should go back on leave to herceptin complete and hair grows?0 -
Aust...I am sorry to hear of your bump in the road during this arduous journey. The question you pose regarding returning to work has been discussed on a number of threads here at bco. I hope you will do a search here and find those threads...or even start a new thread asking the question. I am glad you posted it here as well because we haven't discussed it on this thread.
MHO is a simple one. Do what makes you feel better. One thing I learned from my journey is that I trust my instincts and most times the actions I take from trusting my instincts have served me well. Furthermore, I don't react to how others treat me. I guess, by nature, I am very stoic. I often look for my greater good and the greater good of others and try how to get to the ultimate greater good for all.
Not sure if my thoughts help you. Nonetheless, I wish you the best with your decision.0 -
Aust, I've had a rather surprising discovery. I'm 5 weeks past my last herceptin and am feeling so much better. For six months, I've been a little hard on myself thinking I ought to be able to get back to my business and I've not done it. Tamoxifen has played havoc, but I hadn't suspected how much herceptin was wearing me down. The general 'feedback' is that herceptin shouldn't be too hard. So.. back to work can be challenging anyway. You've changed, the work environment has not. But it might be worth considering taking more time to finish and recup from the herceptin, if that is an option for you. Even though I didn't get my butt in gear to get my full business going, I now wish I'd not been hard on myself and considered it active treatment that still requires love and attention and gentleness for ourselves.
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Well dear sisters....I have great news to share! I've been in touch with our research friends at Sloan Kettering and one of them is submitting a proposal to Komen for research funds to study mucinous breast cancer! I will act as the patient advocate for the project. My job will be to give the patient perspective. My job will be made easy thanks to all of you and YOUR knowledge of your specific type of mucinous breast cancer that you've shared on this thread.
Hope everyone is doing well.
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Thanks for sharing the great news of the proposal for research funds to study mucinous cancer. Well done! You have great perseverance.If anyone can give a full patient perspective it is you so lots of prayers for a clear mind and top notch communication skills. Many blessings on all you do. Can I nominate you as the patron saint of MC? Tricianne.
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Tricianne...Thanks for the compliment, however, I think the researchers who toil in their labs studying mucinous and other rare breast cancers should be extolled the honor as being the patron saints of MC!
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Thank you for being our patient advocate for this research project! I appreciate all that you do to keep us informed. Look forward to hearing about the study as it progresses.
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Golden... They're FIRST applying for the funds! With Tricianne's special prayers, hopefully the research project will be approved! I sincerely hope and PRAY that it is approved, so the research can begin!
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Fabulous!
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My fingers are crossed that they get the funding!
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very awesome news! I hope the funding comes through, when I was diagnosed with pure mucinous in 2004, my cancer center did not know very much about it and I had to consult another cancer center in the USA to collaborate with the treatment plan.
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Sisters... Rest assured that each and everyone of your experiences will be heard and documented. If there is more personal info that you want mentioned in my advocacy, kindly send me a PM. I promise that I will do my best to get everyone's voice heard.
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I haven't posted here in ages since I don't fit the standard mucinous carcinoma diagnosis. My original biopsy showed IDC, predominately mucinous type, with associated DCIS, but I was stage 4 from the start, with lung nodules that were also mucinous. When I consulted a doctor at Sloan Kettering to get an opinion on whether a mx would be worthwhile (I was on arimidex only for 18 months), she said that it wasn't definite that the tumors were mucinous since biopsies only sampled a small portion and it should just be treated as IDC. She did feel that the mx would be appropriate since there was evidence that reducing the tumor burden increased lifespan. The pathology report after the mx lists both breast tumors (3.1 and 2.2 cm at this point; they were about twice as large when I started treatment) as mucinous carcinoma with associated DCIS, and also found mucinous carcinoma in 2 of 4 axillary lymph nodes.
My current mo doesn't think it's significant, but if mucinous carcinoma is rare, stage 4 mucinous carcinoma is vanishingly unusual. I would love to find an expert who has dealt with this and who can tell me how it affects my prognosis and treatment. I wasn't diagosed until March 2011 but I had palpable blobs that didn't show up on mammograms or ultrasound in May of 2010 and pleural effusions (liquid accumulating around my lungs) in July 2010, also without a diagnosis, so I've almost certainly been at stage 4 for more than three years, kind of past my sell-by date. I've now had mx and rads, but I'm still doing well on my first medication. I'd love to have a referral to someone who has dealt with similar cases and I'll be closer to NYC after we move near Ithaca NY later this month.
If your experts have any references for me, I would greatly appreciate it.
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Carpe... I will be in touch with the researchers next week. Kindly check back again next week. Hopefully, I will have more info for you. If so, I will PM you. I wish you well!
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Thanks, VR!
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Voracious, what awesome news! I, for one, couldn't imagine a better patient advocate than you. Delighted to contribute anything they might need... pathology reports, hugs, medical history, family 'rare' cancer history, magical prayers for funding to go through. Name it, it's theirs and yours. (Actually, the wishes for funding are already on their way.)
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Magic...stay tuned! As for advocating...knowing I have everyone's support is very meaningful. Hopefully we will all be as much help to them as they are to us!
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Hello Ladies.
Remember Me.
My cancer was all in my head.
Well am happy to report that after a PHysic evaluation I am sane and the BC was not in my head. Ive had 18 weeks of chemo and 7 weeks of radiation. Had every complication known to man along the way. Have many long term side effects including DVT's and diabeties now.
But there is more at exactly 1 year and 2 days out from original BC now have more in other breast.
Not spending one more day being sick. No treatment this time going to spend what time i have left having fun. Removed the teenagers {all over 18}Sold the house bought a caravan travelling around australia. Thanks all the best to everyone.
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Ginia...Thanks for the update. Hope you will continue thinking of us and keeping us in the loop. We will continue to think of you, as we also do for all our sisters!
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Wow Ginia, you are tackling life full on now. Best of luck, have fun on your travels may all go well with you and may your health stabilise. Lots of care and prayers TricianneAust
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Ginia, wishing you wonders, magic, laughter, healing and all that you would love in your life as you go on this adventure!
Just stopping by to check in on this discussion and to change my email address so I continue to get updates.
I also just sold everything, going to live in a garage suite at my daughters. That'll be home base. Got accepted to train as a sailor on a tall ship in November. If I make the cut, it'll be an opportunity to volunteer whenever I would like in the future. More thrilled than I can say. Feeling so much better now that herceptin is finished, and managing tamoxifen okay... but do get cranky under stress. Will get my business back in gear after the sailing.. Been doing a lot of standup paddling, and in a fundraiser for InspireHealth (Integrative Cancer Care Canada), all the paddlers raised $20 000! So. Moving forward. But as always thinking good wishes for all of us here.
Cheers!
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Hi all,
It's been a bit quiet on this thread, so I thought I would reach out in case anyone else has been newly diagnosed. I'm 27 years old and was originally dx with IDC in August. My final pathology report showed my tumor to be pure mucinous.
Since my lymph nodes were clear, my oncologist was able to order the Oncotype DX for me. It came back with an intermediate recurrence score of 20. He is participating in a clinical trial called PROMIS (http://www.agendia.com/pages/promis/522.php) which allows women with an intermediate risk score to get the Mammaprint for free, and that came back as Low Risk for recurrence yesterday.
His humble opinion is that Oncotype is on its way out, especially since it isn't as reliable in rarer cancers such as mucinous.0 -
LA.... Not sure if Oncotype test is on it's way out. However, with respect to rarer breast cancers, such as mucinous and tubular, it has NOT been as STRONGLY validated as it has for the more common types. In fact, according to the 2013 NCCN guidelines, it is not recommended for our type. That said, many of us with mucinous BC have had the Oncotype test. According to Genomics Inc., the average mucinous BC Oncotype DX score is 15, placing most mucinous bc patients at low risk of recurrence. Keep in mind that the Oncotype DX test is simply one tool to measure whether chemo is warranted. Getting a low Mammoprint score is good news. I wish you well with your active treatment and beyond!!!0 -
Hi everyone, yes our thread has been quiet lately. I have just logged in to say we have fabulous new mammogram machines at Royal Adelaide Hospital Women's Health Clinic that are totally painless. That plus the good news that my third year mammogram since MC in 2010 shows no problems at all. So I am delighted and have to spread my joyful news around. Blessings & frequent prayers Tricianne0 -
its mentioned in my report result: Grade infiltrating Ductal Carcinoma, Grade 2 with foci mucinous differentiation
is this is the same Mucinous carcinoma ?0
