Mucinous Carcinoma of the breast
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well one year ago tomorrow was my diagnosis day. Tbh when I heard the word 'cancer' at 32 years old I didn't think I'd be here right now. For those that are newly diagnosed, it's a struggle, some days I felt like running away but it's doable! I suppose I'm one of the 'lucky' ones who didn't need chemo but the massive surgery and recon and 6 weeks of rads plus working full time was enough. A year on I'm a much wiser person, I love a little bit more, breath a little bit more deeper, laugh a lot more and forgive easier. Cancer for me put everything into perspective, I know now why I was blessed with 2 kids at a very young age cause if I'd of left it I probably wouldn't have be able to have any. I have dark days like all of us do when I think that cough is lung cancer, that stiff neck is bone mets ect but the further time goes on the easier it is to push those thoughts to the back of mind xxx
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Mand....thanks for stopping by and telling all of us how your journey is coming along! Your kind gesture of remembering us and telling us how well you are doing lifts me up! Hopefully it should sustain and remind us all of the importance of lending a hand with wise thoughts to all the other travelers on this journey!
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Hi All,
I am back after a 2 year absence.
First of all, thank you those of you who have kept these going. I am going to spend some time snooping back through to see what has been going on
Here is my update. In Feb 2014 I noticed some changes to the texture and color of the skin approx 2-3 cm from my lumpectomy scar. Also the "dimple" as I found referred to it has increased in length. This occurred in the 2-3 months leading up to my scheduled yearly mammo and BS appt so I decided not to try to change that appt. Fast forward mammo revealed an oval 1.5 cm nodule. I had difficult tolerating the compression of the mammo so the pictures were not that detailed. Radiologist noted "well defined boarders" (like that helps us mucious gals). BS did a punch biopsy and I should receive the results Wednesday.
Debra
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Debra...thanks for remembering us mucinous sisters... I recall my pathology report saying something similar...and I also recall the radiologist telling me that if you make mucinous bc, IF you get a new primary...it can be the same kind. Please let us know how you are doing. I'm sorry the journey isn't a little easier for you...
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Thank you, VR. I should have my results on the 20th. I will post an update then.
Debra
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fingers crossed for positive results x my first mammo app has come through and I'm already dreading it!
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Hoping for good news tomorrow, Debra!
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Thank you Georgia. : )
BS called this am to inform me I have experienced a recurrence. She didn't have any further details as she spoke to the pathologist on the phone. The full report will be available tomorrow.
I have an appt with her and as well as a reconstructive surgeon tomorrow. It will be interesting to see if it is the same type of cancer.
Debra
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Well belly...you landed in the right place for support. We will be here for you.....Gentle group hug from all of us and prayers from our Tristanne ....
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Thank you, I appreciate that : )
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Just got home from work & came to check on you, Debra - sure was hoping you'd gotten better news. I'm so sorry you have to deal with this again, and along with the others here, will be sending lots of good thoughts your way as long as needed.
~Rachel
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Further up date from me:
Meet with BS this am for Surgical Options.
Further pathology-"Skin showing invasive mucininous carcinoma, hypercellular variant, in dermis and adjacent subcutis"
This is the same variant I had the first time.
I will not know the ER, PR, HER2 until the tumor is removed as at my Cancer Centre they unless the patient opts out of having the tumor removed. This fairly common practice in Canada.
I had blood work today and the requistion for a Bone Scan and Chest and Ab CT have been sent in and should be performed in the next week.I will meet with Med Onco after these tests.
Drs think due to our favorable type, metastases else where is unlikely.
I am in a good place with the timeline(s).
Is there anyone else on the board who has had a recurrence? Any journal articles we know about that might fit my situation?
Thanks for the support! : ) You girls rock!
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Belly...thanks for the update. I will look further to see if there are any additional journal articles that can help guide you. However, taking a small peek at the research, there don't appear to be anything substantial out there. I'm not too surprised that the biology appears to be the same as your last bout. Wondering if you are pre or post menopausal. If you were pre...it would seem that you failed Tamoxifen and if you are still ER positive and menstruating, it might be time to discuss ovarian suppression and take an AI based on the ongoing SOFT and TEXT trials and /or have a discussion about chemo. Also, it might be time to discuss mastectomy since you can't radiate twice. The good news is that you still have a good prognosis, but the downside is that you will have to make active treatment decisions all over again! I feel so sorry that you need to revisit this disease.
On another note...I'm still waiting to hear from our mucinous BC researchers at Sloane. They were supposed to hear from Komen to see if they were approved for their research funds. I will post once I hear from them! It's situations like Bellydancer's that scream for attention! There is a dearth of research out there on how to treat our rare cancer!
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Thanks VR I appreciate what your research and advice.
I am pre-menopausal.
So far things are falling into place, it is difficult but this time I feel I know so much more going into see the Drs ie questions to ask etc.
Chemo has already been briefly discussed due to recurrence but I am not making that decision yet. Also mastectomy has been discussed as well. A second SNB has also been suggested. We have an immediate reconstruction program here so I feel greatful for that. I have some time to figure out what I want to do : ) There seem to be alot of options!
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Debra, I'm new to the Mucinous diagnosis myself and I was popping in here to check on you!
If you don't mind me asking did you take tamoxifen after you were originally diagnosed?
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Hi Sun,
I don't mind questions at all. : )
I did take Tamoxifen for approx 2 years after intial DX. I recomend every one who qualifies for it give it a shot. Most people do very well on it. However I did not. I experienced very heavy, long lasting periods and developed a fibriod that went on to degrade. I decided on a break of a few months from taking it. However my energy level increased, periods went back to "normal" and my previously low mood improved. At that point I decided to I would not restart it. I don't regret this decision even though it may have contributed to my recurrence; there really is no way to know for sure so I don't beat myself up about.
Are you taking it?
Debra
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hi,
I have a question. A year ago, some mucin (moderate) turned up in a skin biopsy (docs thought I had IBC which I don't) Because there was so little of it, among an infiltrate of inflammatory T cells, it was totally ignored by the pathologist. (Dermatologist)
I thought it could only turn up in a nodule in breast tissue but your experience shows it could also be in the skin.
Any thoughts on the matter? Should I get it re-tested?
Thx
Alicki
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Debra I am taking it, that's why I asked. I've only been on it four days and so far see no side effects although I did get quite hot in bed last night. Our cancer is just such a different thing. I plan on staying on it until I'm at a point that if I have side effects and they affect my QOL I'll look at doing something different. My gyno wants to remove my ovaries, so I can take an AI. His wife has BC and that's how she was treated. I like my body parts and I cringe at the thought of removing them. A reoccurance or potential met though scares the total crap out of me. That's why I asked and I appreciate your sharing!
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"Mucinous lesions in the breast are uncommon. They
Alicki...
constitute a wide spectrum of lesions ranging from
extravasated mucin associated with fibrocystic change
to mucinous carcinoma. There are limited data on the
reliability of core biopsy in the diagnosis of mucinous
lesions of the breast. We reviewed the core biopsy and
surgical biopsy diagnoses in 32 mucinous lesions of the
breast. We conclude that core biopsy is highly reliable
for accurate diagnosis of mucinous lesions of the
breast.......http://ajcp.ascpjournals.org/content/127/1/124.full.pdf
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VR when I read my final path they found ADH with mucin along with my IDC mucinous. I had a biopsy a week before surgery and they said it was ALH but that never showed on the path. I've questioned them about where did the ALH go but haven't got a satisfactory answer. Could it have been a component of the ADH? That's the only explanation I've been given.
Any advice?
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Basically, Alicki....there are all types of mucin forming cells in or on the breast. Things get a little tricky with Mucinous diseases because they can occur anywhere on the body. You can have a primary mucinous skin cancer on your eye lid...you can have a mucinous breast cancer that metastasized to the eye lid....You can also have a benign mucinous lesion to your breast as well as a benign mucinous lesion to your eye lid! Get's confusing.0 -
Just found the first reported case of a primary cutaneous mucinous carcinoma of the penis....very interesting:
http://www.ncbi.nlm.nih.gov/pubmed/24554981
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Hello,
THanks - The dermatologist pathologist did suggest I had Recticular Erthyemous Mucinous (B9 usually) but breast surgeon said there wasn't enough mucin to worry about. BUT REM does fit the part, especially with lympocyte infilitrate.
I have an other area on my upper next and chest which is not diagnosed and my new dermatologist says it's roscea but I will get a second opinion, it really looks like REM. And you can also get rem on your breasts.
No cancer cells were found in the reduction material (breast reduction) but I was worrying about this mucin thing. I think I can rest with REM for now. Mucin can be B9 or malignant (as you know better than I). I also have FBC breasts.
Voricous reader: I'm thinking of contacting the institute that published that article to ask them about breast skin biopsies.
Just a question: when they do a core biopsy, does the skin come with it, or is it just breast tissue?
Cheers
Alicki
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You are asking a good question about whether or not skin tissue is also included and examined. I think you need to ask your surgeon that question. If the skin looks like it is unusual in any way or the suspicious lesion looks like it is close to the skin or includes skin, I would think that the surgeon or the radiologist would choose the best method to biopsy.0 -
Hi all,
My biopsy came back with IDC, mucinous type. So I guess this is one of my groups.
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Summer, welcome to the group! I am sorry you have to join us but you will find a load of support and information here.
Your welcome Sun, I apreciate your sharing as well : ) I also had ADH in my final path the first time.
VR, thanks for clinical publications.
I am wishing I had taken a photo of the skin lesion I had prior to punch biopsy. As it was so odd to describe.
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summer...sorry to hear about your diagnosis. Welcome to the journey...
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sun....I would ask to speak to the pathologist to clarify the diagnosis. However, since the area in question was a benign component, it doesn't drive the treatment protocol, so I don't think in the long run it matters much. When I was diagnosed, I was told there was a slight DCIS component to my mucinous tumor, but it was never defined how much. Since you treat the most aggressive component, I never inquired further. What I've found is that some pathologists descriptions vary and sometimes their descriptions vary a lot. Very frustrating. And worst of all is when 2 pathologists disagree...
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In 2008, I was diagnosed with Stage 1 Pure Mucinous Carcinoma Breast Cancer, the tumor was 1 centimeter. I decided to have a mastectomy for both breasts and I took aromasin for five years. Five years and 8 months later I have a mass on my neck that is not a cyst. I am afraid that my BC may have metastisized. I have to go for a biopsy. I feel as if I was punched in my stomach and brought to me knees. Is there anyone who is willing to communicate with me?
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EDITED!
Ariella...I'm sorry to hear about your concerns that you may have a distal recurrence. First off, you won't know anything until you have a biopsy.Generally speaking, once you have had a cancer diagnosis, both patients and clinicians will always suspect cancer when imaging identifies something and biopsy will be necessary to prove otherwise. That said, now, let's say it is, well, for most patients it is very slow growing, so it doesn't necessarily mean that you would die from it. Many, many women can live very long lives with metastasized disease! My physician told me if I got a recurrence, I still could live a very long time!
Keep in touch and know that we are here to offer our combined strength to make it through this journey.
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