Mucinous Carcinoma of the breast
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Hugs Wobbly. That is a thought that has run through all of heads at some point or another. That is a general statistic, not your prognosis. Even without knowing more about your diagnosis or treatment, the odds are with you. In general mucinous carcinoma has an even better prognosis. That thought may pop up time to time and its normal. It's you working through the mental effects of what you have been through. If worst case, it does happen, you may have many many more good years and will work through it just as you have this time. It's not easy and a constant battle against fear we all fight. Just let those of us here know when you need support.
Jo
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Thank-you both for picking me up off the floor.I was feeling very lonely with it all
I want to see my beautiful five year old grow to an age where she can sail her own ship
sometimes I read the pages on this web site and my heart aches with all the sadness
so many vulnerable women speaking with such strength
Love
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wobbly...I see from your previous posts that you continue to have a rough time. The first few YEARS are tough. Your body and mind have been jolted! And....you become exhausted from thinking about all of life's uncertainties...I never felt the need for a support group. That said, maybe I should have joined one so I could have given support to sisters like you! Through the years, the DH and I have had soooo many medical issues and emergencies, that my cancer diagnosis and treatment almost felt like a walk in the park! Make no mistake, my treatment wasn't that easy....but easy enough to feel passionately that the worst was and is behind me! Many years ago, when my kids were little, I had emergency life saving surgery on TWO occasions! I just prayed to G-d that both my husband and I would get to dance at our children's weddings. G-d answered my prayers recently. Our daughter was married in June and is now expecting. I continue to pray longer and harder for the people around me whom I love and treasure rather than spend precious time praying for myself! It has taken me years to feel that way. That's how I know I'm okay now. I've quit worrying about myself. I promise that day will come for you! My prayer for you is that you arrive at your new normal, sooner than later! Until that time comes, stop by HERE and support will grow all around you. The ground here is fertile with nurturing, strong and loving sisters....we all flourish thanks to each other's generous spirit and warm hearts. Honestly, I get peace and strength from my mucinous sisters. Some of their journeys have been difficult....but at the end of the day we are here for one another! AMEN!
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Hello all. I have just found this website and thread and feel the need to share my story and perhaps help someone going thru this for the first time. Cancer....a scary word indeed but from all my research and experience if you HAVE to have cancer....then this is the best kind. I had a lumpectomy/segmentectomy and 21 lymph nodes removed 23 years ago. I had 33 radiation treatments and Tamoxifon. All was well for all these years. Then last months 3-D mammogram showed a change, another small mass was biopsied and the same "type" of cancer was detected. The first was Colloid Carcinoma and this last one Mucinous Invasive Carcinoma. I was 51 the first time and 74 now. I just had a mastectomy on the same breast a few weeks ago and decided to go ahead and try reconstruction....yes, even at my age! Life goes on and we need to enjoy each and every day and even though this kind of cancer is rare....they are finally putting more information out there. It's being discovered in more and more younger women. Keep the faith and keep a positive attitude.
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Wow Harleygranny that is truly iinspiring
and very generous of you to post your story,May you have another 23 years recurrance free
I wish you all good healing and many thanks
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harley....thanks for joining in! Glad to hear you are doing well! Interesting how both times you were diagnosed with colloid/mucinous cancer. I recall my doctor telling me that if I got a breast cancer again or recurrence, it would likely be the same. You are the first person that I've "met" who has had that scenario. I wish you well! And thanks for your support!!!!
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Hi everyone. gypsyjo was good enough to invite me here from the surgery page. I have mucinous adenocarcinoma which is not categorized as invasive. My lymph nodes were clear (see specs below) and margins were benign. I'm not finding very much about mucinous carcinoma that is not invasive (including in the profile choices for this site). I have a MO appointment on Thursday Oct 1 and I want to go in informed about what kind of treatment is reasonable for me going forward. gypsyjo pointed out the harm of certain treatments vs. their benefits. I really want to avoid radiation. The "Think Pink, Live Green' brochure even says "Avoid unnecessary radiation" which makes total sense to me. I don't know anything about the effects of HRT.
Thoughts? Thank you!!!
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not...I'm very confused. In your signature (below your comment) you state you are Stage1a. Stage 1 and above thru Stage 4 refer to INVASIVE cancer. If your tumor was NON-invasive, you would be Staged at Stage 0. Could you kindly explain the discrepancy?
Thank you.
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voraciousreader, I'm sure that would be my confusion, not yours. In the profile choices, it says stage 0 is DCIS (which I understand to be invasive). But mine WAS/IS cancerous. My pathology report clearly says "invasive: negative". That's why I thought it was hard to state that my cancer is non-invasive in the profile choices. Looking for clarity.
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DCIS is NON-invasive...that is why they refer to it as Stage 0.
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I am still confused....😱
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not....I think you need to have your pathology report clarified by your physician. Adenocarcinomas are malignant, invasive cancers. If you are Stage 1, then you have an invasive cancer....
Please contact your team and come on back and join us! We are a rarity and welcome you!
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http://www.ncbi.nlm.nih.gov/pubmed/26387144
Latest retrospective study regarding mucinous treatment and recurrence...
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thanks voraciousreader. I'll be sure to read that.
In the meantime, I spoke to my surgeon. She said I am stage 1, that it goes by size and my tumor was 1.8 cm. I believe my pathology report said negative to being invasive because the margins were benign and lymph nodes were clear.
So, my question was regarding the use of radiation and HRT. Benefits? Downfalls? And how does the fact that it's mucinous come into play?
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not....I think you need to have your pathology report clarified. Stage 0 refers to NON-invasive disease. Since you are Stage 1, you have invasive disease. With respect to "negative".... I am assuming that your tumor margins and nodes were clear. That said, if you are ER positive and HER 2 Negative, then you should ask for the OncotypeDX test. Now, the test isn't " recommended" based on the NCCN guidelines for tubular and mucinous breast cancer....but I would recommend that you have it. It can help you in the decision making process. As you know, for pure mucinous BC, the outcome is usually favorable. So, that puts you into a situation where you must carefully choose from many more options.
If you decide on a lumpectomy, evidence has shown, you are less likely to recur if you do radiation with it. In fact, there is one study that says lumpectomy with radiation trumps mastectomy without radiation.
With respect to endocrine therapy, the NCCN guidelines tell us that with mucinous tumors under 3 cm....you should "consider" endocrine therapy.
Good luck!
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Hi notdoneliving:
Please keep in mind that "HRT" (hormone replacement therapy) is not what will be proposed, and is not usually recommended for breast cancer patients.
As voraciousreader indicated, the possibility of "endocrine therapy" which is used to treat hormone responsive breast cancer (ER positive and/or PR positive) will be under consideration.
Here is a link to a BC.org page about it with several additional sections accessible via the menu at left.
http://www.breastcancer.org/treatment/hormonal
When you meet with the medical oncologist to discuss endocrine therapy, be sure to ask for an explanation about the different risks endocrine therapy can address (local recurrence, distant recurrence, a new primary tumor in either breast), and request an estimate of the magnitude of those risks in your particular case, in light of your presentation, personal and family history. Then, ask by how much the recommended treatment could reduce these risks. Make sure you understand what the total level of risk would be without treatment versus with treatment.
Also inquire about the major side-effects of any treatment under consideration. Compare the rates of such side effects to the risk reduction that may be achieved to see how you feel about that.
Remember to inform or remind the oncologist if you have any personal or family history relevant to possible side effects. Also, inquire about any recommended testing prior to initiation of therapy or during therapy.
If for some reason, endocrine therapy is contraindicated, then inquire about other options (e.g., ovarian ablation, bilateral salpingo oophorectomy) and whether they would be recommended or not in your case and why.
The risk/benefit analysis is a very personal one, and patients will often come to different conclusions under similar circumstances, because of their different personal risk tolerances. For example, one person may want to reduce risk as much as possible no matter what, while another may feel the benefit (risk reduction) achieved does not significantly outweigh the risks (of serious side effects).
Good luck!
BarredOwl
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I was told years ago that my best option was a lumpectomy followed by radiation and Tamoxifen. (what I had done at that time is now, today, considered a partial mastectomy and Tamoxifen was the newest and greatest !) I got 3 opinions on this because one doctor said lumpectomy and radiation and the 2nd said just remove it and do nothing. I went for a 3rd opinion....to see if I would get two out of three to be the same. The 3rd said the same as the 1st so I went with that decision. I do feel the radiation may have kept me cancer free for the 23 years but in hindsight, maybe I should have just had a mastectomy at that time and no radiation? A total mastectomy was never a decision that they pushed... as I recall.. Most of the studies back then were suggesting that lumpectomies were equally as good as mastectomies in many cases. The reconstruction sure would have been a whole lot easier then than it is now because radiation, while it can be lifesaving, does a lot of damage itself. Tough decisions to make....even when you try your best to think it through and do all the research you can. We all have different things going on in our lives that sway our decisions BUT all we really want to do is live as well and as long as we can. I expect to live at least another 23 years cancer free and happy.
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http://www.ncbi.nlm.nih.gov/pubmed/26387144
VR - Thanks for posting! Since it was a nonstatistical difference, do you think there is any reason to switch back to Tamoxifen? I'm getting my bone density test results back soon and am worried about the impact of the AI since I switched about a year ago. Going back to Tamoxifen might be an option for me.
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golden....I have a 6 month check up in early November with my MO and I plan on bring up this study with him. Please discuss it with your team as well and let's report back here afterwards. The study seems quite encouraging.....
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Hi Everybody! It's been a while since I've updated and coming back to the forum I see there are so many new stories. I thought I would update everyone on my progress hoping that it will help someone.
Last summer, July 3, 2014, I had my first partial mastectomy after being misdiagnosed the year earlier for a pure mucinous tumor. I was going to begin chemo when I discovered through this forum and close relatives in the medical field that mucinous tumors did not always respond to chemo. My first oncologist had a Mammaprint done which came back as a high reoccurrence which did not sit well with my third oncologist. At City of Hope they ran an Oncotype DX which came back low so we went with that one as they had seen Mammaprints inconsistent in the past and trusted Oncotype more. Also, the high reoccurrence result in the Mammaprint did not make sense with the mucinous diagnosis and other factors with my health. I went through three oncologists until I found someone who really understood mucinous, it was frustrating but I was so happy when I finally did find someone who really understood the diagnosis.
With the decision to forego chemo I was ready to go through with radiation. Days before I was to start radiation treatment, my insurance approved an MRI that we had requested months earlier. Went through with the MRI and got conflicting diagnoses on whether or not there was a suspicious mass. Was told that it was nothing but I really wanted an MRI biopsy just to make sure. City of Hope came through and gave me an MRI biopsy to find that it was DCIS. Got another lumpectomy, the margins were not clear so went under for the third time. Now for some reason the mastectomy discussion did not really penetrate, or more likely I wasn't hearing it. After sinking in that the multiple lumpectomies were taking my breast tissue piece by piece instead of all at once, I finally opted for the mastectomy in lieu of radiation.
During the mastectomy I was supposed to get an implant to stretch the skin but because of the multiple surgeries they opted for an expander which was extremely painful as I'm sure most of you women know. Now that I'm a few months out, the pain has subsided and I believe that for me the mastectomy was the right decision. I look forward to "new boobs" for Christmas and so far the cancer is completely gone.
Tamoxifen was another issue. I had been on it before the mastectomy and did not do well. It was weird, I felt out of my body and snapped at everyone around me. I had read that the antidepressant Effexor did well at minimizing Tamoxifen's side effects so talked with my oncologist about it. I was concerned that with the pain from the expander and the tamoxifen side effects, I would become a horrible person to be around even though my husband, friends, and family were more than supportive and understanding. Luckily the Effexor did what I had hoped and, even though it took a few weeks to get used to, I couldn't be happier with the results. I still feel warm a lot of the time but nowhere near the hot flashes from before and my temper and mood are so much better. I do get a stiff jaw at night and sometimes find it hard to sleep through the night but I've played with the times of day that I take both medications and have found what I think works for me. I also began taking diatomaceous earth which i believe has helped lift my brain fog from the surgeries and medications and hope that it will help with the numbness in my breast and upper arm areas.
I know there are many paths and everyone has to do what's right for them but I hope that through this forum and individual research women are able to advocate for themselves.
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glad to hear from you la! Sorry about the bumpy path on your journey! So true that we all need to do what we believe is best for ourselves. I make no judgments here. All I try to do is provide the best available research so that all of us can make our best decisions with the help of our teams...
Mi wish you and all our sisters well!
From the bottom of my heart...thank you for checking back here and remembering all the sisters, including me, who have gone before all of us and for all of the sisters ahead
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Hello old sisters and new,
Checking in, reading posts from each of you. For those that are new since I've signed on, I'm glad you have found this thread - it has helped me immensely both with information (especially thanks, Voracious!) and with being in a supportive community of sisters caring about each other. Wanting to let you know, all is well. I'm one of the women who had mucinous with HER2+ diagnosis. 3. 5 years later I am active, healthy, still some side effects with exemestane, (my hair is thinning a lot. I commented on this to my daughter today - she said,"Mom, I didn't know your hair bothers you. It was too thick before, it looks great now." Now, all of a sudden my hair looks better. ~smile~ ), some joint pain - but probably more years of playing hard (sports) and less of drugs contributing. But all in all, well, with virtually no longterm side effects from the chemo, herceptin, or endocrine therapies. Okay, actually, I do get cranky - to the point that oncologist and I are considering me going off the drugs for a bit - to determine if I'm just getting to be a cranky person or if the drugs are contributing. But still, minor to what some people go through.
I know others here have not had things go as well and my heart goes out to you, and well.. to all of you. It's not an easy place to be.For those who are new and who could use miracle stories. My daughter had been diagnosed with a rare ovarian cancer in 2010 and went through horrific chemo, critical 3 times and had 2 small strokes. She has since had Two Incredibly Darling Girls - ages almost 3 and 10 months. All are well. Daughter and children are miracles. Point of story: Miracles happen all the time.
Love to all of you!0 -
feeling....Wow! I am so genuinely happy for you and your daughter! Both of you are profiles in courage. When awful things happen to ourselves, I often wonder where we find in ourselves the emotional strength and physical fortitude to carry on....I guess it is those big and small miracles that surprise us on our journeys that makes us carry on!
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Feeling the Magic - Welcome back and thank you for sharing your story!
VR is right, I learned that pathologists can vary in how they describe our cancers. Mine were read at a large hospital with good pathologists and listed my tumor as "mucinous". I think we all assumed it was "pure" mucinous. I had a good MO who recommended chemo and went for a second opinion at an NCI research center where they recommended no chemo. After consultation with my MO, I went for the no chemo recommendation. About a month after that (November 2011), I read a post on this thread by "Red Sunshine" (look back and find it). She is a doctor who also has breast cancer (she's written a book by the same name, a good read). She is a pathologist and recommended that everyone with a rare breast cancer, like mucinous, have a second opinion look at their pathology slides. My MO didn't think it was necessary (since I was outside the treatment window for chemo) but I had the slides sent to the NCI research center and the results came back as mucinous, hypercellular variant. In other words, the "mixed" type that is often referred to on this thread. The second-look pathology report describes mine as "having a less favorable outcome". Would I have made a different decision about chemo if I'd h ad this information? I don't know. I work hard at not second-guessing my decisions. What I do know is that I wish I'd had the information sooner rather than later. Fast forward, I'm four years out and doing well. Unlike Feeling the Magic, no grandkids yet!
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hello Patty. I am 45 this year and I live in Nigeria, West Africa. I was diagnosed with muscinous be on the 3rd of September and had a lumpectomy on the 14th of October.
The doctor says I still have to have a mastectomy but what I am not clear on is whether it is a mixed type or not. Well I will find out and the follow up course of treatment. I don't like hospitals much and I believe God will see me through
I wonder why women have to go through all of these. Thanks all . My surgery is in 2 days . I would like to hear more on recovery tips. Diet, type of exercise and stuff
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uchenna...sorry you have to join us.....Please make sure you get all the info you need so you can make an informed decision. For sure it is paramount to find out if it was pure or mixed and if it was ER+ and HER negative....then register at the NCCN website and read the professional version of the breast cancer guidelines...look for the area that discusses tubular and mucinous cancer....also....read the discussion section.....
Regarding diet and exercise....I can't help in that department except to say I take 3 mile walk most days in good shoes. People who know me know I'm all about comfortable shoes!
Good luck with your surgery! Look forward to hearing from you. We are all here to give you hugs and gentle support....
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Hi Uchenna-
We want to welcome you to our community here at BCO. We're sorry for the circumstances that brought you here, but we're glad you've joined us. You've come to the right place for support.
You may find it helpful to read through some of the topics on our Surgery forum for tips on recovery. There is tons of great info there, and our very knowledgeable community is always available to answer any questions you have. Good luck on your surgery, we'll be thinking of you!
The Mods
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Hello everybody, I've been following this thread for almost 3 months now. And I would like to tell my story here also. I live in the Netherlands.
In the beginning of July 2015, I went to the radiologist for a mammogram and echo because I felt a lump in my left breast. On echography there was a tumor seen which was biopted directly. Because Echo was a little bit dubious a MRI was token. After 1 week I got the diagnosis mucinous breastcancer. Complicated by another spot on the MRI which was suspicious for tumor. Further echoexamination didn't show the lesion so I should have an appointment for a stereotactic biopt with MRI. The waitinglist for the MRI was 2 1/2 weeks.The BS told me that although it was a mucinous tumor I should have neoadjuvant chemotherapy and after that hopefully a lumpectomy instead of a mastectomy. I got the feeling the BS didn't knew very much about the mucinous tumours because she said they always treat them like a normal ductal adenocarcinoma. In the meanwhile I learned a lot more on the mucinous and thought well maybe I could get away without chemotherapy. The doctors decided I had to do the chemo because of my age and the size of the tumour. I was not convinced and went to a specialised cancer centre. I was very pleased to hear this breast surgeon said "we'll do it different here". He suggested a target echo and we found out the other lesion was no malignancy (biopt and PA.) So the special MRI didn't take place.
Next step was to do the lumpectomy and SNB. Everything went well except for the results of the pathologists that said the margins weren't clear with DCIS. I had to undergo a re-excision. Unfortunately also in this tissue was found the margins were not clear, again with DCIS. Actually this looks quite like Lahelana who also finally underwent a mastectomy.
I am planned for skinsparing mastectomy with direct reconstruction with a silicon prosthesis on 20th October. So in one week. It has been a while waiting, but this need to be done and than hopefully that's it. I'm beginning to feel a little nervous now. It will be different than the two lumpectomies I've had, I'm afraid. But others came through so I will also! I praise myself very lucky not to have undergone chemotherapy. I also (like others here) would like to emphasis on the importancy of a second opinion in a specialised centre. Like lots of you on this forum al
so experienced, treatments in hospitals can be very different!0 -
tulipa.....glad to see that our thread resonated with you....you don't mention whether or not you are a candidate for the OncotypeDX test....that said, it hasn't been fully documented yet for tubular and mucinous tumors....however, based on the NCCN breast cancer treatment guidelines, with a 3 cm tumor, you should "consider" chemo. I'm glad you got a second opinion and you are happy with your treatment protocol. With mucinous BC, because there is little research, it is often difficult for us sisters to make an informed decision!
I wish you well with your surgery and hope you recover quickly. We are here for you! Please feel free to keep us informed! Hugs and prayers sent your way!
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Thanks for your very quick reaction voracious! I forgot to mention I had a mammaprint which said low risk and I was very lucky not to be BRCA or Check2 positive. It could have been so much worse. Of course we have to wait for the final PA after surgery, hopefully there won't be found anything invasive stil. I have some little concern about the PAreport of the DCIS which is grade 1 and grade 2. I thought that a DCIS grade 2 never can grow to a grade 1 invasive, I understand that this is only DCIS. Is there then a chance of a pathology with ductal carcinoma if the DCIS goes out of it's margins? Do you see it often? Although there is nothing what points in that way. You don't know until the pathologist sees it under the microscope. What I understand from the pathologist is that the tumor itself was pure mucinous grade 1.
Do you have any idea? Thx again!
Good luck for all the ladies here!
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