Mucinous Carcinoma of the breast
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Dear VR, Golden and Destina. Thank you all; hope to write to you all again on my next 19 anniversaries! :-)
VR, such good news. Congratulations!
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Agapornis, So happy for you. Hearing from those farther out make me think I will get there too.
Voracious, You will enjoy. I know that when I was diagnosed, my driving reason to do everything possible to beat cancer was my 3 year-old granddaughter and one year-old grandson. They are my hopes for the future.
Happy Holidays to all of you and your families!
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Congrats Agapornis & Voracios
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http://www.ncbi.nlm.nih.gov/pubmed/26619027
This study suggests that the OncotypeDX test might not be as dependable for pure mucinous breast cancer. In the 4 cases studied, 3 had intermediate scores with a mean score of 17. According to the folks who market the test, the average OncotypeDX for pure mucinous BC is 15.
Thanks for all of the warm wishes!😘
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Gypsyjo and Aloha, thank you! Hugs and best wishes.
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Voracious, congratulations!!! Grandlittlies are the best. Mine are the best spiritlifters in the world... they think they are just being kids, I know they have gotten me through so much. Enjoy enjoy!! Wishing all the sisters here a Christmas season, and a year full of happy and magical surprises!
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Hi Paula,
Was just diagnosed a few weeks ago. Stage 1, less than a centimeter ,colloid cancer. They are recommending a newer type of radiation for me called IOERT. They radiate the tumor right after removal, before they stitch me back up. Thats it for radiation. I'm still deciding if I should do that or full breast radiation for 6 weeks. My MRI looks like it is less than a centimeter with no lymph node involvement as far as they can tell. I'm getting the same statements as far as , this is a slow growing, favorable cancer if you had to get one. I was also wondering how your treated breast looks now
Thanks
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Hi, I was just diagnosed 2 weeks ago with a .80 cm mucinous lump. That are recommending the IORT ,one day radiation also. I'm still nervous about the longevity results, since it is so new.
I'm scheduled for surgery Jan7th. I'm going to City of Hope tomorrow for a second opinion. I love the idea of "one and done" with radiation, not to mention , not radiating healthy skin.
My MRI looked good and they think I'm the perfect candidate for this because of tumor size and grade. I'm almost 47.
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running....sorry to hear you are joining us. These last few years there have been some recommendations as to the different types of radiation. I was recommended 1 week using seeds, but instead chose 6 week whole breast radiation. There is also 3 week as well. Please keep in mind that the only type that isn't in trials is the 6 week course of radiation. That said, while the others are still considered experimental, most insurance companies will pay for which ever one you choose. Discuss it further with your team and insurance company before you decide which therapy works for you.
The good news is that because you have a small favorable tumor, you have many good choices ahead!
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Running, I too am sorry to hear you are joining us. I had the IORT during my LX. It has been around since about 2004 being used in other countries. From my understanding, longevity is the same, reoccurence is slightly higher, but no side effects or damage from radiation. If your tumor is found to be more involved, the IORT is used with traditional radiation in place of the boost. I did find it took slightly longer for my incision to heal and there is some lumpiness from scar tissue from the IORT. Each person has to make a decision along with their BS. I wouldn't hesitate to make the same choice again. Wishing you enough information for you to feel good about your choice. Feel free to PM me if you have any other questions about my experience. GypsyJo
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hi
I was just diagnosed with Mucinous Carcinoma of the right breast on New Years Eve. I don't know anything else at this point but I am supposed to talk to a surgeon on Monday. The only other thing I know is mild differentiation. Any idea of what next steps might be? Is there a MRI and/or surgery? Everything I read is if you are going to get breast cancer this is the one you would pick as it is slow growing, less chance of getting to the lymph nodes. I am 51 and have not gone through menopause. Any advice would be helpful.
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Hi boomer10. Sorry to hear about your diagnosis. I had a lumpectomy of a mucinous tumor in September and just finished 30 radiation treatments. I will be starting Tamoxifen this week. In the beginning I had an MRI to check both breasts for anything else. They didn't find anything. Some of it will depend on what stage you are and if you're HER+. I was stage 1 and +. All has gone very smoothly for me.
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Thanks for the info it was helpful.I dont know anything yet. Will post when I know more. Good luck to you sounds like you are close to the finish line.
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I was diagnosted at biopsy with DCIS and mucinous IDC, the mucinous is Er+ pr+ IK67 8% Had surgery December 17th. From the final path report I only know that there is no node involvement and that the mass was 1.5 cm, they told me DCIS was surronded by the mucinous, so I don't know if the 1.5 cm is both of them or just the mucinous.
I had a mastectomy because a pre surgery MRI showed 2 more suspicious areas, I did not want to go through more byopsies, the 2 areas turned out to be b9.
I will know more on Monday
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kona..the 1.5cm is the tumor size...
Boomer..register at the NCCN website and read the current breast cancer treatment guidelines. Mucinous and tubular have their own guidelines. Read the footnotes AND the discussion section that starts around page 100 where it discusses endocrine therapy. Keep in mind you have a "favorable" diagnosis which means you will have many "good" treatment choices ahead. I wish you well!
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the IDC is 1.5cm? It was not palpable or seen on ultrasound or mammogram, that's why I thought it was the size of both DCIS AND ID
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kona....you can ask for the pathology report. That should be specific. Furthermore, it is not uncommon for imaging to miss mucinous BC. My mass was also identified by my physician's hands. Mucinous is often missed from imaging because it looks like a cyst. And, if you have dense breasts, it makes it even more difficult to find with traditional imaging. My mass was identified with a sonogram and an MRI found a "drop" of DCIS. Treatment plans are based on the most aggressive part of the tumor, so the IDC, Mucinous BC, trumps the DCIS. My physician ignored the DCIS when discussing the treatment plan. All that mattered was the margins and the IDC component.
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How often a mucinous is her2+ (++) Mine was on biopsy along with a KI67 of 8%. Oncologist ordered a Fish test and he thinks it will come back negative. He told me based on what he sees in biopsy report I am Luminal A. All this waiting is driving me crazy, I should have the final path report on Friday, but I know I am node negative.
when I asked my oncologist about the mucinous being pure or mixed I knew he is not used to patients asking this questions.
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Thanks so much Voracious! It really helps to have new information coming at us!
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Thanks, VR!
I haven't posted here lately, but I wanted to comment that the first paper listed is in good agreement with the genetic studies on the tumor on my shoulder blade, which showed FGFR1 and ZNF703 amplification. You might remember that my mucinous cancer was not detected on mammogram or sonogram and didn't even show up in the fluid drained from pleural effusions, but was eventually diagnosed after my nipple inverted and my concerns were finally taken seriously. Both the breast and lung biopsies showed mucinous cancer, but it was controlled for about four years with hormonals. When it spread to my shoulder blade I convinced my doctor to have that biopsied (also mucinous) and sent to FoundationOne for testing, showing the amplifications listed above and a loss of SMAD4. Only the FGFR1 has any current clinical applications. After a further progression to the liver I've been on Xeloda for the last 10 months, which has controlled the cancer well - my tumor markers are in the normal range! - but caused problems with Hand Foot Syndrome and a few minor side effects.
I'm actually surprised that I'm still hanging around and generally feeling good, but we haven't pursued the possible treatments connected with FGFR1 since the results are for other cancers. We still have some ammunition remaining if/when Xeloda fails, but seeing this article motivates me to bring up the possibilities with my one.
Janet
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carpe....I'm so glad I could help! When I think of our mucinous sisters, you are never far from my thoughts and prayers! May your markers stay low for a very, very long time! 👏👏👏💞💞💞👍👍👍
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Hi all
hope everyone is ok
winter in England is wet and windy (talking about the weather we do well)
just wondering....neuvax anyone? apparently it can be used...in trials for early stage tumours which express her 2(+1)
and up to stage 3? It's supposed to prevent recurrance....
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Hi, everyone
I'm diagnose pure mucinous carcinoma on march 2015, my oncologist give me Aromasin and Zoladex to shrink it first before surgery. On March 2015 the size it about 5 cm and now after hormon therapy is 3,6 cm. I plan to go surgery this month ,I still confused go for mastektomy or lumpectomy, because some surgeon ask to mastektomy without radiation because the size is pretty big but the other surgeon can do lumpectomy with radiation. My oncologist prefer lumpectomy , she said lumpectomy with radiation better than mastektomy without radiation , is it true?. I concern about the size pretty big and concern about do radiation, so maybe i will go to mastektomy. Please any advice for me, what the benefit and the risk for my condition. ShouldI do mastektomy or lumpectomy. and one more because I premenopause, is it good to take Zoladex for long term ? or I do surgery to permanent shut down the ovarium ? Thank you so much , really appreciated it. (sorry for my bad English)
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Isah - Sending good thoughts your way. Looking back, I know making those decisions about surgery were very difficult for me to make. There is good info on BCO about surgery and I think there was just a new study saying exactly what your MO said. Here are a couple of links:
http://www.breastcancer.org/research-news/lx-plus-...
http://www.breastcancer.org/treatment/surgery/mast...
Know that you will make the decisions that are right for you!
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isah....sounds like you are doing well and you are being given good choices. With respect to radiation, there is one study, emphasis on the word one, that found that patients who chose doing lumpectomy with whole breast radiation, did slightly better than those who chose mastectomy without radiation. Please also understand that some women are not given the choice of lumpectomy because their tumors are too large or their breast is too small to give a good appearance. What also needs to be factored into your decision is whether you would want to do reconstruction if you choose mastectomy.
My opinion would be to trust one physician and go with their opinion. I found a rock star physician and let him guide me through the decision process. It has been six years since my diagnosis and treatment and I couldn't be happier!
I wish you well!
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Thank you so much Golden and Voraciousre, I have some question, Can I do lumpectomy without radiation? because I heard radiation can trigger other cancer.
The other question is , Which one better Aromasin+Zoladex or only Tamoxifen (I 'm premenopause) , any risk to use Zoladex for long term? or better I do hyperectomy (permanet ovarium shutdown). Thank you so much for the information, hope everyone well.
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Good-good questions. I think the answers will depend on so many things, my advice is to get a really good doctor who you trust and go with his/her advice. My best guess is that VR will encourage you to have your case reviewed by a "Tumor Board" at a cancer center or hospital if you can. I went for a second opinion at a cancer research hospital and that helped me make up my mind on what to do. Waiting until you have a firm treatment plan is really-really hard. Remember to breathe!
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melly....I wholeheartedly agree with Golden. If you think you need additional input with respect to treatment, ask your doctor to have your case reviewed by a tumor board. The tumor board is comprised of pathologists, oncologists, radiologists and surgeons.
With respect to lumpectomy and radiation, my doctor explained that he would only give me a lumpectomy as long as I agreed to radiation. Looking back, I hadn't realized that some women did not want radiation and chose mastectomies instead, because they didn't want radiation. That said, after doing my own research with respect to lumpectomy or mastectomy, I wasn't concerned about the possible short term as well as long term side effects from doing radiation. I thought as long as I had been given the choice of doing a lumpectomy, I thought I would do the lumpectomy and radiation. I believed that doing the whole breast radiation would give me the best chance of not revisiting breast cancer in the future.
With respect to being premenopausal, so was I! Again, because of my good prognosis, I was given so many choices with respect to endocrine therapy. Since we have a rare type of cancer, there isn't much data that supports one type of endocrine therapy over another. I would not like to discuss my specific treatment plan because everyones situation is unique. I'm sure your team will discuss with you the latest studies that speak to premenopausall status. Those studies are referred to as SOFT and TEXT trials. Those trials have suggested that for patients under 40 who haven't had chemo, either chemical or surgical ovarian suppression along with an AI is superior to tamoxifen at avoiding recurrence. Furthermore, if your doctor hasn't mentioned the Oncotype DX genetic test, you should mention it to him/her. This test will confirm whether or not the benefits of chemo would outweigh its risks. That said, the test hasn't been fully validated for our distinct type of breast cancer. However, since I was diagnosed, there has been accumulated data that seems to support the use of the test for our type.
Goodluck!k
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