Mucinous Carcinoma of the breast
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I was diagnosed with mucinous carcinoma at the very end of 2018 at the age of 38 and now I am stage IV with two bone mets. One to the 8th rib and a very tiny one to my T7 vertebrae. I am a patient at Ohio State University The James Cancer Center. They were my second opinion in 2019 and they’ve stuck. I’ve been very happy there. Because of my excellent health and no complaints, no scans had been done as is typically the case from what I understand. Plus, the numbers were “good” as far as the possibility of never having distant metastasis.
My initial dx was stage IIB 2.5 cm mass (but it has tails making it 5.1 inches end to end), ER > 95% PR > 95%, no node involvement, Biopsy said Grade 1. HER2- with nothing too special going on with it outside of that.
My OncoType score was a 7, which made us all so happy. I was placed on Lupron and Exemestane for a while. Side effects were awful, so I was put on Tamoxifen. That was better. I had DIEP recon in 2020, which was wonderful.
Fast forward to January 2023 after enjoying years of great health (lost over 100 pounds, got fit, impeccable health reports), my 8th left rib fractured when I sat down in a chair a little too hard.
One thing led to another and the biopsy revealed the same pathology as the primary breast tumor. Being that this is so rare, including in my age group (I turn 43 this week), we were a bit surprised. I’m 2020, my case was placed in a study at Ohio State on mucinous carcinomas because, as everyone here knows, info is limited and more is needed. What they do know is that there are some long-term survival numbers. My doc told me “there aren’t enough of you to bring the stage IV numbers up.”
Before my entire treatment protocol was in place, I had two scans 6 weeks apart and there was zero observable change in the size of the tumors and the rib actually healed on its own within a reasonable amount of time despite the lesion. This is seen as good news.
So now I’m on Zolodex (oophorectomy coming soon), Xgeva, Letrozole, and Kisqali and he’s very confident that we are going to get an excellent response. Scans have shown the rest of me is clear. I just have those two spots that are not really progressing fast at all, so early catch. No talk of prognosis. He said “we can deal with this for many years.” I have seen it happen in two cases I found online (23 and 25 years stage IV) and a friend’s mom is 21 years out and doing great. So, many years of survival can happen, but there is so much uncertainty.
But yeah, despite no node involvement, the rare less aggressive subtype, and an OncoType score of 7, metastasis still happened. The fact it was 2.5 cm with these “tails,” prompted my first oncologist to tell me that at its rate of growth, it had been there for years. It is possible that these two mets have been around for a while.
I feel fortunate and blessed considering, but it’s easy to get stuck in my head sometimes. Most of the time, I’m doing pretty well, though. The positivity and optimism of my oncology team is amazing. I’m tolerating the meds and resumed my normal life after the rib healed.
I’m still early into the stage IV game…at least discovery-wise, so we will see. Only time will tell, but I’ll take what I can get.
I’m hoping that things I share about this rare type and the fact that it surprisingly metastasized can be helpful.
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Thank you for sharing your experience, gingerg. I am so sorry you are in this situation. As you said, though, it was caught early and hopefully there will be no progression at all. Was your initial diagnosis pure mucinous or mixed? Regardless, it is hard to understand the mechanism of metastasizing, since your nodes were clear and, I am assuming, there was no LVI and your margins were clear... Unless the "tails" you were mentioning would be the explanation. Anyway, it goes to illustrate how sneaky this disease can be! It's amazing that your rib healed on its own! Again, so hard to understand how can our bodies be healthy overall and yet have these dastardly tumors appear at the same time... I wish you continual good health, excellent response to all treatments and minimal side effects. ♥️
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Greetings everyone! It's greatly appreciated Gingerg shared her brave story reflecting a wonderfully positive spirit. What an inspiration while serving as a testament to Mucinous BC being on such a wide spectrum with uncertainty.
Because my MC fell on the more aggressive multi-mixed end of Grade-2 Type B spectrum, docs warn that my probability for recurrence increases annually beyond year 10. Anyone else?
Best wishes & hugs 💞
SPECTRUM OF MUCINOUS LESIONS OF THE BREAST (2023)
"Mucinous lesions of the breast encompass many entities ranging from benign to malignant and nonneoplastic to neoplastic...."
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Thank you for the link, Obsolete. My head is still spinning after reading the article.
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Rain, mine was also 🥴
Architecture of tumor cells can & will vary depending on the cellularity (floating in mucin). Varying MUCIN CONTENT is also a big factor.On the other end of the Mucinous spectrum are mixed clusters of cells, blended together in mucin pools, with higher cellularity but in LESS MUCIN. The architecture of these mixed tumor cells can vary by sub-type and % cellular content.
But even after 4 MC subtypes & after almost 10 years later🤞 it's evidently hit or miss luck 🙏 mixed w/genes & whatever factors. Good luck to us all.
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I'm now part of the club.
Thank you for all for your comments as I've found them interesting and informative.
Diagnosed in February and still healing from a recent lumpectomy.
Initially thought to be stage 1, grade 1. Pathology came back as "pure" stage 2, grade 3. DCIS was also present in the specimen sent off by surgeon. I chose not to have any lymph nodes removed for quality of life reasons.
I had DCIS 25 years ago with a lumpectomy and lifetime dose of radiation treatment on same breast.
Currently, they want to do more radiation treatment stating that the lifetime threshold has been raised. I don't feel warm and fuzzy about more radiation. (no pun intended)
I have a question. When they did the CT scan on me they found a 7mm solid nodule in my lung, yet no one seems to be concerned. The report had made two separate notations about nodules in the lung. One was suggested as infectious versus inflammatory. Today while going over the results with my pcp we went down the list of "impressions" from the CT scan. She noted the "infectious" nodule and said not to worry about it. I pointed out there was a second nodule noted on the report and she looked back in the report under "findings" and realized the two notations were not in reference to a single nodule — but rather two distinct and separate nodules. I'm concerned that all the other doctors made the same mistake. The PCP scheduled another CT scan for 6-mos out from the original CT scan date.
…but reading posts on this thread, I'm seeing follow-ups at 3 months?
What are your thoughts? Did my lung nodule fall through the cracks? My initial thought at the time was they wanted to deal with the breast first …then deal with anything else later?
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Hi LumpyBobcat, welcome to the Mucinous spectrum club that nobody actually wants to join... but I love your screen name. (Years ago our former neighbors & I had fed this very shy skinny wild female bobcat food scraps for months until she & her kitten one day suddenly stopped coming for her daily meals.)
Hopefully the healing from your lumpectomy is progressing and you're probably glad to have that behind you. Don't blame you for declining lymph node removal merely for staging purposes. You probably read it's rare for Mucinous to invade lymph nodes unless it's mixed & associated with IDC (type B). PET/CT scans are reportedly effective in evaluating lymph nodes with Mucinous.
Almost 10 years later, where you are now, I once was, so you're not alone ... except I had multi-mixed MC Grade-2 with multi-centric DCIS Grade-3. I later had been watched for a single lung nodule presenting with ground glass opacities and an enlarged hilar lymph node, but the nodule was found to be benign. Please be aware that most lung nodules are found to be benign, but the waiting & scanning periods can be stressful a.k.a. scanxiety.
Medicine is imperfect and Mucinous is too rare & unpredictable on the spectrum in younger patients, but you could always seek 2nd opinions for your own peace of mind. The following threads may be of some interest to you on lung nodules. I'm not really sure how to answer your question. Best wishes to you and please keep in touch. Hugs
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Thank you for sharing your journey obsolete. And thanks for the compliment on my screen name. Your bobcat story is interesting. Few of us have the opportunity to view a bobcat at such close range. We are the lucky few to observe from our homes!
I DID read that this type of cancer rarely invades through the lymph nodes and so many folks have lingering pain from the procedure it wasn't something I wanted to deal with. Exercises every day? That's not something I could commit to.
I had CT scans and they didn't report back anything about lymph node involvement. That was good enough for me. Plus I read that 50% of the time the lymph node results are wrong (for this cancer?). Not sure where I read that or how accurate it was.
I've been scheduled for another CT scan on my lungs in a couple of months to follow up on the node. I can breathe a sigh of relief then.
I'm two weeks out from surgery and I'm absolutely exhausted. I don't understand why I'm so "spent". Does anyone have any insight on this?
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Hi Bobcat, here's a terribly skinny little bobcat, desperate for food, seen in a driveway this week in SW Florida.
Definitely can relate to memories of fatigue. Here are some links. Take it slow & easy and best wishes...
https://community.breastcancer.org/en/discussion/853505/tired-on-tamoxifen
See also thread:
Tired on Tamoxifen
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hi, saw you tagged me. Just had the oncologist appointment. Looks like mine is IDC with neuroendocrine features. So I think different.
waiting on oncotype. And they’re suggesting tamoxifen, so not sure about anything at the moment, I’ve had uterine cancer, so wondering if that’s not a problem any longer or if there could still be some cells,0 -
Obsolete, thank you for all the links. I'll go read them all. Your local bobcat does look a lean.
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Amazing pic, Bobcat! Your incredibly brave bobcat at looks as though he's trying to stare you down And hope you're starting to feel better & stronger after your recent surgery.
Here's info on fatigue and auto-immune diseases.
FATIGUE AND AUTOIMMUNE DISEASE
https://www.health.harvard.edu/diseases-and-conditions/fatigue-and-autoimmune-diseaseWHAT ARE COMMON SYMPTOMS OF AUTOIMMUNE DISEASE?
"Many women say it’s hard to get diagnosed, something that Orbai agrees with. “It’s not black or white,” she says. “There’s usually no single test to diagnose autoimmune disease. You have to have certain symptoms combined with specific blood markers and in some cases, even a tissue biopsy. It’s not just one factor.”
https://www.hopkinsmedicine.org/health/wellness-and-prevention/what-are-common-symptoms-of-autoimmune-disease0 -
Yes. My little friend saw me through the window and was giving me a dirty look.
I still don't understand why, a month after surgery — without any treatment beyond the surgery — I'm so exhausted. The NP said it's cancer exhaustion. …but I don't HAVE cancer anymore as far as we know. Is lumpectomy surgery this slow to recover from? I go for a walk in the morning and then spend the rest of the day taking naps before I go to bed for the night.
No one is speaking of autoimmune disease on my end.
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Hi Bobcat, can't get over your cute resident bobcat friend. So gorgeous!!
Everyone is different, although many of us with BC had begun to feel fatigue prior to diagnosis. I know I did. Then when I had my first BC surgery (lumpectomy) the fatigue hit me hard because I had painful complications (cellulitis infection, seroma, cording). Then months later I had a double mastectomy which was less painful & less complicated for me, where I quickly bounced back.
However, today many patients took experimental COVID vax/boosters which are said to cause autoimmune injuries in a low percentage of people. That experimental vax combined with cancer is really unprecedented until this pandemic.
I truly hope you bounce back to normalcy soon and I'm so sorry about your difficulties. Your body has gone thru trauma with BC and then again thru your recent surgery which increases inflammatory responses.
Do you take a Tumeric Complex with cayenne pepper and also daily Vitamin D? I take a daily Broccoli Sprout Extract also for it's sulphor.benefits.
Sending healing wishes & hugs.
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Sulforaphane in Broccoli Sprout Extract supports healthy cell replication plus also improliver health.
SULFORAPHANE AS AN ANTICANCER MOLECULE: MECHANISMS OF ACTION, SYNERGISTIC EFFECTS, ENHANCEMENT OF DRUG SAFETY AND DELIVERY SYSTEMS
https://pubmed.ncbi.nlm.nih.gov/32152852/BREAST CANCER PREVENTION-IS THERE A FUTURE FOR SULFORAPHANE AND ITS ANALOGS?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7352481/------------
NEW-ONSET AUTOIMMUNE PHENOMENA POST-COVID-19 VACCINATION
Yue Chen et al. Immunology. 2022
https://pubmed.ncbi.nlm.nih.gov/34957554/0 -
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I've just run across a new term today: "paraneoplastic syndrome". I think I fit into that category. Although I didn't know it until just now. About a year prior to being diagnosed with cancer I was very sick - no strength and laid in bed for 3 weeks. Appetite was gone (lost 20 lbs). When I stood up, I couldn't depend on my legs staying under me. Severe muscle pain and weakness below the knees. Even the bottoms of my feet hurt! To walk to the powder room I felt like frankenstein (my hands outstretched for balance, trying to stiffly/painfully walk). Severe knee pain as well. Weak. Exhausted.
I figured it must have been a virus or covid (I did not get the vax) and it would pass.
I finally went to the doctor after a year. I was getting better, but it was only gradual and wasn't completely going away. I'd had severe knee pain for a year and wanted an x-ray to see what was going on. I asked my new PCP while I was there for a mammo order as well because I had a lump that they never seemed to catch on the imaging tests — but through the years it's been getting larger.
Dr. ordered x-ray on knee, foot, ultra sound tests on my chest, abdomen, a mammo (us if needed). There were "findings" but nothing anyone was too concerned about. *I'm still concerned about the "nodule" found on my lung no one seems to be worried about.
Then the breast cancer train left the station and there was no more discussion about my weakness and other symptoms since the initial imaging in January 2023. Everyone was sweeping me into the cancer system.
When I went to see the surgeon and oncologist and filled out paperwork I never mentioned all the symptoms I'd been having for the prior year because I never associated one with the other. The paperwork only asked what symptoms I had recently acquired.
So I'm wondering if this fatigue and pain in my legs isn't "cancer fatigue" but perhaps "paraneoplastic syndrome" that may be going undiagnosed?
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Hi Bobcat, so sorry about all your difficulties, although I'm not familiar with this condition. There's an older thread linked above which had addressed this same condition.
Adorable pic of your cute bobcat couple. They look so intriguing and well-fed. Cute pic is a keeper.
Hoping you can get some resolve and improvement in your bundle of symptoms 😍 soon. Hugs..
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Hello ladies!
I found this thread via reddit. New to the club! I was diagnosed with Mucinous Carcinoma last May 2023 at 31 y/o, ERPR+ HER2-, done with BMX with reconstruction. Tumor size of 2.3cm, 0 node involvement (out of 5), Ki-67 is 12% (sorry I don't have the luxury for mammaprint/oncotype :< ). I've consulted with 5 Oncos, 3/5 of them recommended chemotherapy because of my young age (benefit of about 3-6%), 2 said that I will not benefit with chemo given a favorable histology and a non-aggressive tumor. On top of this, I suffer from endometriosis and adenomyosis gaaaaah!
Has anyone been on the same boat as mine? I've been reading articles and journals about MC and it's slow growth + not being responsive to chemo at all. I also chatted with a few, and one mentioned that they did not do chemo but had mets a few years after (which their doctors said was an isolated case/happened not because she did not do chemo). And since we're a very special group, i'd like to pick your brains here if I should just be sticking with hormonal therapy (Zoladex + Tamoxifen) or should I proceed with chemo?
thanks so much!!!
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OMISSION OF CHEMOTHERAPY FOR THE TREATMENT OF MUCINOUS BREAST CANCER: A NATIONWIDE STUDY FROM THE KOREAN BREAST CANCER SOCIETY
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933040/
"...chemotherapy did not statistically significantly improve prognosis, except for the N3 stage.""However, gene expression profiles cannot be used to predict recurrence risk in MBC due to the abundant mucinous content [11]."
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ADJUVANT CHEMOTHERAPY COULD BENEFIT EARLY-STAGE ER/PR POSITIVE MUCINOUS BREAST CANCER: A SEER-BASED ANALYSIS
• Chemotherapy benefits patients with negative nodes and tumors larger than 3 cm
• Chemotherapy benefits patients with positive nodes and tumors larger than 1 cm
https://www.sciencedirect.com/science/article/pii/S09609776203018060 -
Welcome BaskInTheSun, sorry you're here at such a young 31 age. Hope you're healing well from your BMX w/recon surgery. You poor dear with Endo etc also in your mix of issues.
Maybe you've already read the 2 posts above, which wouldn't support chemo in most MC presentations. If you choose to consult with your pathologist to dig a little deeper on the following tumor characteristics, it may help you decide on treatment.
• Categorized as Luminal A or Luminal B molecular subtype?
• ER % and PR % high or low expression?
• Any LVI (lymph vascular space invasion)?
• Androgen receptor expressed at a low level?
• Any tumor fixation to skin or chest wall?
• Any micropapillary pattern tumor cell variant with with intermediate to high grade nuclei?
• Extent (%) of extracellular mucin?
• Grade of tumor and mitotic rate?
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obsolete … you know so much. All the questions about the incidentals are so important individually and as a whole. I don't even know if I can answer all those questions and I consider myself fully involved in my cancer status.
In response to Baskinthesun. You're so young to be going through this. It's a hard decision you face and you're smart to do your research and reach out.
My situation is different in that I'm much older. My first oncologist wanted to put me through chemo sight unseen. My second oncologist wanted to put me on hormone blocking meds & radiation therapy. I'm opting for nothing due to age and quality of life.
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thank you so much @obsolete and @lumpybobcat for sharing your insights. yeah, it's been a rollercoaster journey since April and just when I thought it'll be over after BMX, surgeons and oncos have been recommending chemotherapy. only one Onco believed i didn't need chemo given a favorable histology and only recommending hormonal therapy for me. i'm so afraid with the side effects of chemo (most especially on my mental health) i know most people say the hair will grow back, but i can't-don't want to lose mine, plus i still want to enjoy my early 30s given how the pandemic ruined my plans. thank you for reading :)
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EVALUATION OF EFFICACY OF CHEMOTHERAPY FOR MUCINOUS CARCINOMA: A SURVEILLANCE, EPIDEMIOLOGY, AND END RESULTS COHORT STUDY
"Predictors for receiving chemotherapy were younger age, estrogen receptor-negative, progesterone receptor-negative, and human epidermal growth factor receptor 2-positive status, higher grade, larger tumor size, lymph node involvement, radiation reception, and mastectomy."
https://pubmed.ncbi.nlm.nih.gov/33425023/0
