Mucinous Carcinoma of the breast
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Obsolete, moderators, thanks for your responses.
I already had the MRI, which is why it was seen that I had 5 lesions. On the ultrasound, 4 were seen.
I have had two lesions biopsied. Both have 98% estrogen receptors and one has 85% progesterone receptors and the other 25%.
I have several questions, let's see if you can help me:
Question 1: My biopsied lump feels larger to the touch now, after the biopsy. Do you know if it will return to its original size? It's been three weeks since the biopsy and it's not getting any smaller.
Question 2: I would like to know if there is any way to transform the mastectomy they want to perform on me into a lumpectomy, so instead of removing my entire breast, they only remove the tumors. To do this, I understand that I need them to reduce in size or disappear using some technique. Is there a technique or something that can be done to achieve this: oncothermin, cryoablation, something else that I don't know about?
Question 3: Does anyone have experience with these techniques that I mention: cryoablation or oncothermia (electromagnetic hyperthermia) or with any other that has worked in some way?
Thank you very much for continuing here. I wish one of the old colleagues would come in to tell us that things are going great for her after a long time.
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unfortunately I find myself back in the club 7.5 years after my original diagnosis at age 31 of stage 1 grade 3 mucinous (multifocal, no nodal involvement, oncotype score 16. At that time, I was treated with double mastectomy, TC chemo and 4.5 years of Zoladex + armidex (no radiation)
Now at age 38, I have a tiny local recurrence in the fibroadipose tissue between the implant and my skin 2 years after coming off the AIs, which appears to be a local recurrence based on it again being mucinous per biopsy and in the same area as the original tumour cluster.
Still going through the full battery of scans but based on this being caught so early (only just had a clean ultrasound in June where it wasn’t there!) my surgeon has suggested this can just be cut out without implant removal followed by radiation and getting back on the AIs. I would have thought something more aggressive might be in order especially as this recurrence is very close to the skin 0.1mm!
If anyone has been through similar would be grateful to hear what sort of treatment was suggested second time round.
thanks.1 -
Sonia, hello friend! What a perplexing situation, to which I regretfully have not much relevant info to add. Higher ER%/PR% tend to be more favorable. I once had been told some tumors can fill with fluid/blood after biopsy which can contribute to tumor enlargement, as mine did.
If your doctor cannot give you satisfactory answers, perhaps you could author your own individual thread to solicit feedback on this board. Im not familiar with endothermic or cryotherapy reactions, although the technology sounds fascinating.
Regarding breast reduction, be very careful not to rush into reduction until you're 100% certain there are no remaining occult mucinous malignancies in the breast. A reduction procedure didn't end well for a BC patient I knew who had residual tiny occult malignant tumors in her breast which had been too tiny to be visible on MRI. Radiotherapy, scanning and medicine are at times imperfect, unfortunately, so mitigate your risks.
For whatever it's worth, my double mastectomy was much easier, less painful & more doable for me than lumpectomy, except the drains were an inconvenience for a few days. It's also bought me emotional freedom & peace of mind for these past 10+ years, which is invaluable to my life. Best wishes 💗 in your decision making 🤔
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Part 2
Cancer patients ought to exercise caution not to "turn off P53 Tumor Suppressing Protein (P53 Gene), one of the key mechanisms the body has to fight off cancer, allowing for the rapid proliferation of cancer cells." -- Dr.Charles Hoffe
Not everyone has high sensitization, so patients will react in different ways. But it's still best to minimize biological action associated with abnormal cellular signaling. A biophysics PhD had warned that spike protein can bind to ACE2 receptor, estrogen receptor & many others. This action essentially can activate the estrogen receptor, for example. Please discuss with medical teams who understand this or who are willing to admit it 😃
p53 deficiency is common in cancers. Some mRNA can reportedly wake up dormant cancer cells & can trigger Tcell receptors &/or suppress p53.
"BNT162b2 mRNA reprograms adaptive & innate immune responses" Ref 2021 paper by scientists at Radboud Centre in Netherlands. Also some spike protein can damage immune response, so all BC patients need a healthy high oxidative environment. Adequate Vitamin D is important with a clean diet. Wishing everyone well who are navigating new & repeat occurrences in this rodeo.0 -
THE BNT162b2 mRNA VACCINE AGAINST SARS-CoV-2 REPROGRAMS BOTH ADAPTIVE AND INNATE IMMUNE RESPONSES
"In conclusion, the mRNA BNT162b2 vaccine induces complex functional reprogramming of innate immune responses, which should be considered in the development and use of this new class of vaccines."
https://www.medrxiv.org/content/10.1101/2021.05.03.21256520v1SURVIVAL OUTCOMES FOR PATIENTS WITH NONMETASTATIC PURE MUCINOUS BREAST CANCER
— Julia Cipriano, MS
Posted: Friday, August 23, 2024
https://jnccn360.org/breast/medical-literature/survival-outcomes-for-patients-with-nonmetastatic-pure-mucinous-breast-cancer/0 -
Bumping for @bubbles17
Because it's noted Bubbles originally had Mixed Mucinous with IDC, perhaps recurrence might be treated as conventional IDC this 2nd time around?? You may possibly receive better exposure on IDC threads for Mixed IDC tumor. I heard a couple Stage-IV MixedMC recurrences had been treated with Taxotere or an AI + Verzenio with favorable responses. Best wishes.
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obsolete, thanks for the reply.
My recollection is that my initial biopsy in 2017 was “NST with mucinous features”, which would be treated as IDC, however the full pathology after surgery changed to “invasive mucinous carcinoma”, which I read to be a re-evaluation based on the overall greater % of mucinous they removed.
The path on the biopsy this time says “invasive mucinous” straight off the bat so I’m assuming it will be treated as such0 -
Seasons Greetings everyone, hope everyone is doing well.
MIXED MUCINOUS CARCINOMA OF THE BREAST IN YOUNG FEMALE PATIENT: CASE REPORT
https://jogs.one/JoGS_1174/
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CLINICOPATHOLOGICAL CHARACTERISTICS AND GENOMIC PROFILING OF PURE MUCINOUS BREAST CANCER
https://pubmed.ncbi.nlm.nih.gov/38896982/
"The mechanisms underlying PMC recurrence remain unknown."
"Tumour size, lymph node status and TNM staging differed significantly between recurrent group and non-recurrent group.""TNM stage is an important prognostic factor in PMC. Although we revealed that regional LN-positive PMCs show increased occurrence of duplication variants at 15q23, 17q23.2 and 20p11.21, and deletion variants at 21p11.2."
"And these alterations were NOT DETECTED in primary tumours of regional LN-negative PMCs."0 -
MULTIDISCIPLINARY TREATMENT FOR LOCALLY ADVANCED MUCINOUS BREAST CANCER
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11324225/
"17 cm sized exposed tumor covered with pus, necrotic tissue, and mucus occupied the whole right breast..."
"To get favorable local control, the patient thereafter received sequential chemotherapy, i.e., anthracycline-containing chemotherapy followed by bevacizumab plus paclitaxel therapy, resulting in marked tumor shrinkage."
"The patient refused to receive post mastectomy radiotherapy and has been well without any recurrences on fulvestrant and palbociclib therapy for 21 months."
"In the treatment of metastatic breast cancer, it is well known that the addition of bevacizumab to chemotherapy increases side effects without improving overall survival but improves the overall response rate [8, 9]. We, therefore, added bevacizumab to preoperative chemotherapy for favorable tumor shrinkage followed by better local control."
"No tumor regression with the preoperative tamoxifen therapy does not directly imply the inefficacy of tamoxifen therapy against this breast cancer. It, however, is true that tamoxifen did not at least have a strong antitumor effect on this breast cancer. We, therefore, have postoperatively treated the patient with fulvestrant and palbociclib."
"Breast oncologists should note that multidisciplinary treatment including both preoperative chemotherapy and skin defect covering using LDMC flap is a feasible therapeutic option with the intent of favorable local control even for mucinous LABCs."
Happy Holidays everyone and a healthier new year!
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Happy New Year, Obsolete! With lots of good things, joy and peace! ♥️
Thank you for keeping this thread going. I appreciate the articles you share! Mucinous is so puzzling in that it is so indolent, that rarely metastasizes, yet not indolent enough not to be malignant...
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Hi,
I've had a hard time getting back into the forum. I've managed it with help.
I'm unsure whether to have a quadrantectomy or a mastectomy. My operation is imminent. With a mastectomy I wouldn't have to undergo radiotherapy.
Is there any girl on the forum who hasn't had radiotherapy by having a quadrantectomy or a lumpectomy?
Does our type of carcinoma also require radiotherapy whenever quadrantectomy is performed?
Thank you very much Obsolete and Rain88!1 -
@sonialand, I hope everything in going well and you recover as expected, if you had your surgery. I am sorry no one got back to you. Take good care! ♥️
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Hello & welcome back,Sonialand, very sorry you find yourself here again. How have you been doing? There aren't many of us Mucinous patients due to the rarity of this BC subtype, which you probably observed.
Because of strong family history of both lung & heart troubles, I had twice declined radiotherapy. My BC was left side. I have no regrets. I had multi-focal Mixed Mucinous
My first surgery was a lumpectomy (more like a partial mastectomy). 2nd surgery was a bilateral mastectomy where more malignancies were found per surgical pathology review.
My recommendation is that Mucinous patients obtain second opinions before reaching final decisions. Insist on pre-operative MRI. Mammograms are said to not find all Mucinous lesions.
Please let us know how you are progressing and best wishes to you.
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MUCINOUS BREAST CANCER - YOUNG PATIENT
"As many as 21% of mucinous carcinomasmight at any age and tumour size might not be detected mammographically."https://radiopaedia.org/cases/mucinous-breast-carcinoma-young-patient?embed_domain=external.radpair.com&lang=gb
https://radiopaedia.org/cases/mucinous-breast-carcinoma-young-patient
MUCINOUS CARCINOMA OF THE BREAST: DIAGNOSIS AND MANAGEMENT OF AN UNUSUALLY YOUNG PATIENT
"Reported 10-year survival for pure tumors is 87%-90% and that of the mixed subtype is 54%-66%"
"The largest cohort of this type has shown that the prognostic factor continues to be lymph node involvement, followed by age, tumor size and having hormone receptors."
"However, radiotherapy has not shown a significant difference in the overall survival of patients with mucinous carcinoma of any subtype."https://www.sciencedirect.com/science/article/pii/S193004332200098X
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Hey there Rain88, hope all is well with you. Wishing everyone a great springtime full of health. Below links are interesting.
MUCINOUS CARCINOMA IN A MALE BREAST WITH SKIN ULCER: A CASE REPORT
RACE AS A PROGNOSTIC FACTOR OF BREAST MUCINOUS CARCINOMA
YouTube video of MC ultrasound:
https://youtu.be/Ey7hl5nua-g?feature=shared
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Thank you for the articles, Obsolete. I hope you are doing well too. Spring seems to be just around the corner! Take good care! ♥️
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Thanks Rain88! Hope you're doing well yourself. Doing fine here, 12 yrs later🤞Being teased by lovely spring temps & looking forward to spring cleanup & gardening 🌺💚
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Rain88, Obsolete, Thank you very much.
I've already had surgery. I had a quadrantectomy, and with this surgery, they told me I had to undergo radiation therapy, but I'm really scared of radiation therapy. A lot.
Is there anyone who hasn't had it after a quadrantectomy or tumeroctomy?
Is there any study that says that with quadrantectomy and mucinous carcinoma, it's not necessary?
OBSOLETE, Thank you so much for posting so many studies. The one you posted said it wasn't necessary if you had a mastectomy. Do you know if there's any study that says the same if you have a quadrantectomy or even a tumeroctomy?
They removed a lot of my breast, but not all of it, of course. And I imagine that, on top of that, they'll have to give me more radiation therapy than if they had removed less.I don't know who I can consult with about this issue. Do you know who I could consult with?
I'm so glad to see you here; we're keeping this important thread active for our carcinoma. I really appreciate you continuing to share your experience here. I wish you the best of luck.
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Hi Sonialand, hoping you had a smooth recovery from surgery. Your command of the English language is very 👍 good. My Spanish is weak & has been forgotten, sorry.
RT is usually done for the purpose of mopping up stray cancer cells possibly left from surgery. You could query your nurse navigator or hospital advocate rep, but usually any major cancer center would typically have dedicated breast pathologists who would be ideal for consultation. It's best to bring your slides, images on disc, path report & BS surgical notes.
The aforementioned radiotherapy study exemption comment had pertained only to Pure Mucinous tumors with 90+% mucin composition. If you had Mixed Mucinous, RT is normally the standard of care after lumpectomy. Please discuss your treatment plan with 2nd opinion oncologists. The following are considerations a 2nd opinion oncologist may assess on your original presentation.
• How long ago was your quad surgery? Any positive margins?
• What size was your largest tumor?
• One of your tumors had a very low PR, which may may not always be considered favorable, so what size was that specific tumor, was there a Ki67 score for this particular tumor?
• Was a genetic assay (Oncotype or Mammaprint) run on any of the tumors?
• Any other genetic testing performed?
• Was there a liquid (blood) biopsy done looking for circulation of tumor cells in blood?
• Did you have chemo?
• Was there any LVI or infiltration in blood vessels or stromal tissue usually referred to as lymphovascular or perineural invasion?
• Were all your tumors Luminal A molecular cell type?
• What % mucin contents did each of your 5 lesions have?
• Were any lesions mixed with conventional IDC?
• Were all your nodes negative?
• What was the highest grade of your lesions?
• Did any of your tumors have a high level of mitosis?
• Were any lesions located along your chest wall?
• You had a quad surgery, so all your tumors must have been located all within one quadrant where muscle tissue was removed, correct? Inner or outer quadrant?We hope you can find someone you're comfortable to speak with and who can guide you in a 2nd opinion to form the best decision.
"The treatment of special types of breast cancer is still controversial due to the limited amount of evidence..."
Best wishes to you in Spain 💚 please keep us posted because we care.2 -
Sonialand, I'm thinking of you. ♥️
Obsolete's reply is very comprehensive! There is much to take into consideration when it comes to deciding the course of treatment.
My carcinoma was rather small and pure mucinous, but the closest margin was at 0.5 mm, so I underwent 19 sessions of radiotherapy, with minimal side effects. 6 years later I am still glad I did, even though at the time I was on the fence.
Take good care! ♥️
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My first time posting but I have been so grateful these past two years for all of the women offering up their own experiences with mucinous breast cancer and for those keeping this conversation going. I had DMX in April 2023 for pure mucinous in my right breast in the same spot I had ADH excised 8 years earlier. I have not had chemo or radiation and I am not on estrogen blockers due to conflicting health concerns. I do have ostopenia but not alarming and my recent Dexascan actually showed improvement. That said, I have had 3 rib fractures (all on the left and in front) since surgery - confirmed Feb and Nov 2024 and again April 2025. The first two were no trauma and the most recent very low trauma, think bend and twist and I am just 60 yrs old. Bone Mets would really be beating the odds but I am in the process of trying to rule that out. I do have lymphedema (right arm and truncal) after only 2 sentinel nodes removed, so I do like to avoid norms lol. Has anyone else experienced something similar?
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Obsolete, Rain88, thank you so much for your messages. They make me feel very supported.
I'm waiting for the results of some tests on the tumors, but I'm pretty determined not to undergo radiation therapy.
They haven't told me if they're pure mucinous or mixed, but since there's nothing but mucinous tumors, I assume they're pure.
The MRI in July 2024 showed 5 lesions (one wasn't seen on the ultrasound or mammogram), and now, 8 months later, they've only removed 3. It's not known if two of them have joined the others or if they disappeared on their own. And I don't think there's any way to know.
I don't have an MRI from before the operation that would allow me to compare how they were recently. And I also don't know how I can tell if they've grown or not, because the MRI only gives one measurement, and during surgery, they take three.
Obsolete, why didn't you have radiation therapy? How long has it been since your surgery? Have you taken estrogen inhibitors?By the way, I'm using Google Translate to write to you here.
Thank you very much. Let's keep this important thread active.0 -
Ohmaryanna,
I don't know anything about what you're asking, but I welcome you to the thread as a writer. I wish you the best of news.
By the way, what are DMX and ADH?
How come you also got lymphedema in your trunk? I didn't know something like this could happen. I also had two sentinel nodes removed. I'm so sorry you're feeling this way.
Do you know if there was any injury or infection that caused the lymphedema?
Good luck and stay strong.
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Sonialand,
DMX is a double mastectomy and ADH stands for Atypical Ductal Hyperplasia which are atypical cell changes considered a pre cancer by some doctors.
I didn't know lymphedema in the trunk was a thing either! Luckily my breast surgeon refers all her patients to physical therapy after surgery and it was diagnosed very soon after starting there. Swelling in my arm followed several months later. When they injected dye to identify sentinel nodes before my surgery it took over 4 hours for the dye to reach the lymph nodes - that's pretty unusual. I have autoimmune challenges which may make me more prone to swelling but we don't really know why, but no injury or infection.
It sounds like you have had your fair share of mystery as well. I appreciate your welcome. Wishing you all the best. And sending out gratitude to the other women who are so knowledgeable and supportive.
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OhMaryAnna, a warm welcome from the Mucinous sisters thread. I'm very sorry about your BC experience and all your complications. Later I'll post a link to the PMPS threads which hopefully may help send you on the right paths.
Oh yes, it seemed eventful burdens & complications happened after my lumpectomy, although not with the double mastectomy. It's hit or miss.
I had PT for 10-12 months for a frozen arm, cording, post-cellulitis healing and lymphadema after lumpectomy & removal of 3 sentinel nodes. Today, ~12 years later, I still have minor issues in one arm on the cancer side, which I don't think will ever go away because lymph channels can get blocked.
I hope other's experiences will help to comfort you.
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For many patients, the pain & discomfort lessens and goes away gradually after PT. For treatment of post-mastectomy pain syndrome (PMPS):
• lidocaine cream
• compression bra
• soft camisoles
• chest physical therapy referral
• daily stretching exercises
• scar tissue mgmt
• cranial-sacral massage
• myo-fascial massage treatment
• pain specialist
• pain counselor/ psychologist
• nerve block
• IV lidocaine infusion
• truncal lymphedema treatment
• naturopathic herbal oils
• yoga
• daily turmeric for inflammationBest wishes for steady progress.
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https://community.breastcancer.org/en/react/comment/lol?id=5923829
Post- Mastectomy Pain Syndrome.
Please also search PMPS threads.
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SoniaLand, hello to you across the Atlantic. To answer your question, I declined radiation because I had missed the window of opportunity. After my lumpectomy, it took 10-12 months of PT & treatment to fully heal from painful complications (cellulitis chest infections, cording, PMPS, frozen arm & shoulder, inflammation and issues in both lungs following auto accident injuries with pulmonary embolism). It was left sided BC. There was a timeline for health insurance coverage. It was thus far proven to have been the best decision for my heart & lungs.
What are your main reasons for declining radiotherapy?
What are your plans for your 2 little mystery MIA (missing in action) tumors? Perhaps a second surgical opinion is in order. What did your Pathologist have to say about the ramifications of not removing 2 little tumors which had gone missing? You must have some fairly dense breast tissue.
Thanks for staying active. Both my friend Rain88 and I had been thinking good thoughts about you 💚
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