Mucinous Carcinoma of the breast

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.

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!

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?

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.

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.

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. 

Fabulous!

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.

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.

Thanks, VR!

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!

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!

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! 

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!!!

its mentioned in my report result: Grade infiltrating Ductal Carcinoma, Grade 2 with foci mucinous differentiation

is this is the same Mucinous carcinoma ?