Mucinous Carcinoma of the breast
Comments
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Fadheir....Yes. Mucinous breast cancer is a rare type of IDC. I would ask your physician to tell you which type of mucinous breast cancer it is. There are two types, "pure" and "mixed." "Pure" refers to mucinous cells exclusively. Whereas, "mixed" contains mucinous and the more common type of IDC mixed together, hence, "mixed."
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tricianne....I am happy dancing for you!
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Thanks Voracious Reader for the dancing, its lovely to share good news with everyone. Blessings on all you women on this site. Tricianne0 -
Hi Everyone
It's funny I thought I just log in and check how everyone is. Glad here that things are well Tricanne with the 3 yr checkup. I've just had my 1 year mammogram and all is well. I have 3 herceptin to go and can't wait, but pray it works wonders. My hair is growing, although I have an extreme Afro which takes some getting used to. Still not back at work and pondering what the next steps may be. I'm feeling good and finally getting my health back. I had slight hiccup with the tamoxifen on half dose still and had a recent biopsy - all clear. Will slowly increase my dosage. Sending health and happiness to all xx0 -
Oh I forgot to mention I also have been identified with a vitamin d deficiency - 4 times lower than should be. This is now being treated
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Hi AustJourney good to hear from you again and to hear that things are going reasonably well. The tamoxifen can give you some strange side effects can't it I'm glad my body has now adjusted to it. Apparently a lot of us who have breast cancer have a Vit D deficiency so its worth getting that sorted out. Blessings on you. Tricianne0 -
Austjourney...Thanks for checking in and letting us know how your journey is going!
I forgot to mention that recently, I too, had a check up and all is well. The best news I received, came from the radiologist. who said that I can now resume ANNUAL checkups...that is, unless there's a problem. Now, if my husband's health was only as stable as mine....Thankfully, most days, he is well and active. My one and only dream is that together we will grow old ...I've accepted the fact that there will be many bumps ahead, just like there has been before. But that's okay. Bumps and bruises along the way, I guess...build character and strength and ultimately give us wisdom...something that can only be acquired by age. Each day that we share together is a blessing and with that, becomes a stored memory. That is what gives me peace and happiness and the willpower to carry on.
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Voraciousreader, thanks for reply
My report said its IDC with Mucinous defrentiation so its propeply mixed
does it make difference in prognosis and treatment ?0 -
VR: I'm so happy you are on the annual visit plan!0 -
cider... How are you doing??
Fadheir... I am not sure whether yours is pure or mixed. Pathologists, depending on their training and age may use different descriptions. Since "mixed" mucinous tumors' prognoses tend to follow more closely with "traditional" IDCs, and "pure" is classified as a "favorable" subtype of IDC, I would ask for more clarification from your team. Regardless, it appears that you are now 5 years away from diagnosis, so I would think you should be celebrating that important milestone! I wish you well!0 -
VR, I finished rads 3 weeks ago, so I'm finished with active treatment. I had only a fair response to chemo, hence the 10 positive nodes. Rads were pretty aggressive, twice per day, 44 total. I'm still healing. Good news is there's no sign of cancer! I did go to MDA. I had surgery (MX and ALND) and rads there in Houston. Now to get back to good health! No easy task there but I am glad to be back on the three month visit plan.0 -
Yes. Cider...3 month visits sound great! Sounds also like they blasted that cancer out of you and it should be way past Pluto by now and NEVER find it's way back into your body! I wish you well and hope you SOON enjoy a full recovery!
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Dear MC sisters
yesterday I get very bad news: A lung met was detected with CT. Three months before nothing suspious was seen but now it is serious. A very suspect round defect with 6 mm lenth and a suspious lymph node in the lung which is now become greater.
Now I´m waiting for the biopsy and I´m very worry. I got a hard chemo, herceptin, radiation , T-DM1 and nothing has protected me against metastases. My last hope is a endocrine therapy. Have somebody experience with lung metas and pure mucinous BC?
Best regards and marry Christmas
Frieda
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Frieda....I'm sorry to hear your news. Our thread has been quiet for some time and as the expression goes, "No news is good news." Sadly, that's not the case today.
I will private message you if I have any further information that might help you.
As you are aware, HER 2 positive pure mucinous breast cancer is extremely rare. So, finding a treatment protocol that works is a challenge.
I send my warmest wishes and prayers to you and your loved ones for a better new year.
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I contacted our researchers at Sloan Kettering yesterday...Recall that I was asked to be the patient advocate for a Sloan researcher as he pursued a Komen grant to study mucinous breast cancer. Here is what the lab's lead researcher wrote:
"I am
currently on holidays but I was planning to contact you next week when I am
back: Susan G Komen invited us to write a full application after we submitted
the pre-application in September. We basically had to extend the scientific
bits and give more detail about the experimental part of the project. We will
know in May whether Salvatore will receive the funding. Thanks again for being
our advocate!"And there is even more good news to share from the email. Also recall that Sloan has set up and funded it's own rare breast cancer lab. Regardless of the Komen grant which would lend a financial hand, the lab researchers will STILL continue their studies of rare breast cancers. Here is the BEST NEWS:
"In the new year, we will be analyzing a first set of mucinous breast cancers,
we will keep you posted."So dear mucinous sisters, there is hope down the road for all of us and our future sisters. Funding the study of mucinous breast cancer will eventually lead to better treatments for all.
I wish all of you a happy holidays and joyful new year.
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Frieda,
I'm so sorry to hear your news, but it might help you to know that my mucinous cancer with lung mets has been stable on anastrozole for 33 months now. My mets were present at dx so no mx was performed at that time and it wasn't clear if it was pure mucinous, but I did eventually have surgery and all the tumors removed were described as mucinous. (My computer keeps truing to correct "mucinous" by changing it into "mutinous." Maybe it knows something I don't
)I'm not HER2+, although my initial test was borderline, but I see that you're ER+ and PR+, so hormonals are likely to give you good results. I have had only minor side effects and I'm still on my first AI, so I have a lot of alternatives when anastrozole stops working. If your lung defect does turn out to be a metastasis, while it's not good news, there is a good chance that you can be treated successfully for a long time. I've had several doctors tell me that mine can be considered more of a chronic condition because of it's good response to my first AI.
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carpe...thanks for checking in! It's so good to hear that you are doing well. I keep reminding the researchers that it's patients like you and now Frieda that makes their research all the more necessary and important. I sincerely wish you well. And Frieda too!
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Freida, So sorry about the news. Waiting for results can be so very hard. Sending good wishes your way.
VR - Thanks so very much for keeping us up-to-date on the news from Sloan Kettering. That is terrific!
Carpe Diem - Mutinous! I love it. I feel like a mutiny against cancer today. A young colleague was just diagnosed with BC and had bad margins on her lumpectomy so is heading back for more surgery next week. I'd like to throw BC over the side of the ship for everyone.
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Thank you very much for your posts and your good wishes. I´m pushed forwards. Reading about so successful hormonal therapy gives me the hope back that I can see my three children grow up. The youngest one is six years old. Thank you carpe diem.
My bones were tested yesterday: No mets
The next step is to operate the lung met. Probably the whole met will cut out and the biopsy will be cancelled. The surgeon is specialiced for lung mets and transfers even whole lungs. So I´m in good hands. More informations I will get in the first week of the new year.
VR: It´s a good idea. A treatment protocol which works is a challenge for me. Knowing you at my side is a good feeling. You are the best advocat who we can imagine.
I wish you sincerely a merry christmas and a lucky healthy new year
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Hi Ladies,
It's been 17 years since my diagnosis. I had actually discovered the lump 2 years earlier and had an US which looked "normal". No further scans were ordered and I had forgotten all about it until a dear friend was diagnosed with IDC. This time I went to a different facility; after many scans and a biopsy, my pathology report said: mucinous ca. I had no idea what it was. Two different surgeons advised the same thing: modified radical mastectomy. A week later I had surgery with tissue expansion. No further treatments. No oncotype test. No idea about hormone receptors.
Now when I look back, I see how ignorant I was at the time of surgery. The internet was not widespread and I guess BCO was nonexistent! I knew nothing about mucinous ca, I was just terrified with the word ca. As years passed and the more I learned about my dx, I calmed down and tried more to enjoy life. 5 years ago I moved to the seaside with my DH, started growing my tomatoes and peppers
and doing a part time job. Ladies, I wish you all the best in your lives. I hope you all accomplish your wishes and lead the life you want.
Merry Xmas.
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Hi all my MC sisters. I do hope you are all managing your Christmas celebrations. We are just winding down from a warm 30degrees Celsius day in Adelaide. Its been a great day with family. Tonight it was high time for me to catch up with your posts. So more prayers you all & for Freida, so glad that there are no mets in your bones and that you can hopefully find the right protocol for the lung mets. Agapornis its great that you have settled down to enjoy life, I so agree with you about how much information & support we can get from the internet in the last few years. When I had bowel cancer nearly 13 yrs ago I could just get some information from a limited phone call with the Cancer Society, now there is heaps of information but still nothing like the support we get through this link. So all at BCO thanks for the terrific service and Voraciousreader your input is always superb. Thanks too for all you are doing to get our rare breast cancer researched more thoroughly, Mutinous sounds like a great way to describe it carpe diem. Your update is encouraging too. Cider8 may your 3 month followups give you good results, its good to have finished your rads.
May you all be richly blessed with a healthy New Year with good courage & plenty of energy.
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dear VR, I am new to the group. Diagnosed in June with mc in my left breast I opted for a bilateral mastectomy with expanders. Happy to say that there was 0 lymph node involvement even though the size of the tumor was 2.7cm. Plowed forward with implants and just last week lypo to enhance the left breast and nipple construction. Seems like just when I,m not hurting it,s time for another surgery! Not really a big deal as I am on the tail end of reconstruction...I hope. Tamoxifen has been a very "hot" experience for me. Thank you for being an advocate for us. I was wondering how long it takes all of us to exhale. Still having a hard time not having a tenseness to my body from fear. Wishing you and all of us a very healthy new year! Maddie
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thank you agapornis for your encouraging post! Diagnosed in June I am still dealing, processing and healing. I feel very encouraged. Wishing you continued good health...maddie
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Dear Maddie,
It takes time to process the dx but you will heal and be less worried as time passes. It is good that you are finished with reconstruction.
The months after diagnosis were stressful for me both physically and emotionally. Surgery, then the doctor appointments, bloodwork, and scans every 3 months constantly reminded me of my dx even when I tried to put everything behind. Then the number of followups was reduced to 2 per year, then once a year, which tremendously reduced my stress level. I still have my followups every year but I consider it as a "checkup" that I would normally have even without my dx. Wishing you the best in the coming days and years.
Dear Tricianne, it is so good to hear that your November mammo is fine. Hugs and best wishes.
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Dear Maddie,
One of the best definitions I have come across for FEAR is False Evidence Appearing Real I know it may sound trite but when I look back many of my fears for either cancer were false evidence and not based on factual evidence, it is much easier to focus on the negative than on the positive. I try to meditate on scripture and use the verse
2 Tim 1:7 For God has not given us
the spirit of fear; but of power, (to deal with difficult situations) and of love (his love to meet our needs &
his love to deal with difficult people), and of a sound mind/self control ( to
deal with myself/ my difficulties). If I stop and focus on this it frees my thinking up and stops my imagination working overtime.May your healing, your progress and the support around you help the fear to decrease. It is such an unjolly nuisance! Much love and prayers to you all as you see the New Year unfold. Tricianne
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Maddie....Trish has a great way of describing what we all feel and a great way of rationalizing our feelings. I think the most difficult time is when we are diagnosed through the period of active treatment. And then, as time ticks and thrusts us forward, somehow we move on and before we know it, we are engaging in living. Worrying about myself now doesn't worry me much anymore. I worry now more about my husband's health and believe it or not...that feels good! That's because I'm back to feeling where I was before this adventure for me began. It's been almost four years. Time is passing quickly and I can promise you that some day soon you will wake up and begin feeling that you've arrived at a new place that feels familiar. It's called the "New Normal." I wish you and all our sisters a new year filled with unexpected joy!
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hi girls thought I would check in. I finished 6 weeks of rads in October and immediately jetted off to the Dominican for 2 weeks rest and relaxation. I had my genetic testing 2 weeks ago and results won't be in until end of Feb. I'm doing ok but find that every little pain or nighle I'm thinking the worst. My neck, shoulder, knees and ankles are so achy and clicky, I'm sure tamoxifen has played a part in this but I'm going to ask for a scan to put my mind at rest. Happy and healthy new year to you all xxx
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Dear Mandksmum,
In the first several months it is not so easy not to think about dx, but as time passes you'll be less worried and start to forget all about it. Give yourself some time. By the way your trip to Dominican sounds amazing. Have a happy and wonderful new year.
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VR cannot wait for that day! Thank you!
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My dear warriors I need to vent. I feel lucky to, in a bad situation, have come out with only having to take tamoxifen. The double reconstruction is going fine...they are never going to be the same but they look like breasts. Every time I just want to cry I tell myself it could have been soooo much worse and feel guilty for feeling sorry for myself. So many have it harder. I feel grateful but yet I did go through it all. The weeks of unbelievable fear, the surgeries and now the hot flashes that are probably causing global warming : ). I think I am trying to reconcile what is to what could have been. Anyone else? Maddie
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