Honestly… its just constantly changing everytime I see the hospital I get more news that is different from what they expected.
So now I have a very rare so I’ve been told, Breast Cancer that i believe to be called Mucinous that is mixed in or along side with my Lobular NST carcinoma. I had one invasive tumor now removed with clear margins via lumpectomy. Multiple DCIS and Mucinous carcinoma found in surgery. None of which showed up on Mamo, Ultrasound or MRI.
My surgeon only refers to the Mucinous as the rare mucus and tells me its nothing to worry about as I’m having a double mastectomy now so it will all be removed.
My surgery is booked for 16th April.
Has anyone else ever had this or has this Mucinous cancer???
I always come away from the hospital with more questions than answers.
I had ‘multifocal invasive mixed carcinoma mucinous ductal or lobular’ not entirely sure what this meant in all honesty however one of my tumours was HER2+ which then necessitated chemotherapy.
I’m finished after having has left mastectomy then completed chemo then radiotherapy so hopefully that’s it for a while apart from various preventative injections to prevent recurrence.
Initially was told it appeared to be a single tumour and hopefully would require a lumpectomy, however that didn’t happen as everything changed! So you’re not alone in that.
Sending you my very best wishes x
Hi kat-jack
In June 2022 I was diagnosed initially with a 21mm invasive mucinous breast cancer tumour in right breast (self-referred this lump, which hadn’t shown on recent mammogram).
Further investigations into historically troublesome left breast eventually revealed 11mm invasive lobular cancer tumour. Both were Grade 2, ER+, PR+, HER2-. Both sentinel nodes on the left side were clear but there was one other involved node. Only reported on one node (clear) on the other mucinous side. Nothing further was mentioned about the mucinous, other than it was rare. There seemed very little concern about it. I had double mastectomy with all possible breast tissue removed (no reconstruction) and then went on to have an axillary clearance on the left and radiotherapy on the left chest wall. Nothing further mentioned about, or done to, my right mucinous side. Clearly of no further concern. As usual, the patient is told the very barest minimum. Hope this is of some reassurance
I don’t know anything about Mucinous breast cancer, however I would like to wish you both well. sounds as though you’ve both been through quite a lot on your breast cancer journey.
Fingers crossed for Health and happiness going forward for you both.
I was diagnosed with pure Mucinous carcinoma (50mm), wide spread LCIS and multiple fibroadenomas, all in my right breast. Given the size of the tumour and all the other stuff going on I had a full mastectomy on the right and SNB, and the two nodes taken were clear.
From what I was told my diagnosis was very rare not just because it’s a rare cancer, but rare someone for someone under 60 (I was 43 at diagnosis). Because of this I also had radiotherapy (and tamoxifen).
I did not need chemo as my Oncotype score came back at 14.
Sending lots of luck and love for your surgery and treatment
It’s such a lot to take on board, and I feel like I’ve learned so much I could pass biology a level now!
Sending lots of luck and love for your surgery and treatment
I am also 43, Im now wondering what tumour they will take to do the predict score with and ocotype test.
Honestly my surgeon is a nightmare he never explains anything properly and completely domonates the conversations to what he wants me to know and when I ask questions just shuts me down.
I have absolutely no idea what my diagnosis is currently apart from I have multiple DCIS my invasive tumour was successfully removed and I have a rare mucus and lots of it. ( no actual name other than rare mucus, no size of it no mention if its been removed nothing )
I going to ring BCN on Monday to see if I can get some answers and also get my Histopathology report sent to me.
That’s so rubbish about your surgeon, it’s really not fair at all. Do speak to the BCN to see if they can help pin down some answers for you.
I only found out the full details of my tumour and the other issues after my mastectomy. From the biopsies I knew it was pure mucinous but not about the LCIS or fibroadenomas (however this is spelt!). Also the full pathology after the mastectomy also showed it was a grade 1, and not the grade 2 they initially thought.
Have you been referred to an oncologist yet? It was my oncologist who did my Oncotype test, and made the call on the rest of my treatment.
My surgeon told me that I wouldn’t be seeing an oncologist as I won’t need any other treatment after the double mastectomy just the tomaxifen.
My invasive tumour after lumpectomy was graded as 2. He mentioned DCIS grade 2. Nothing about the Mucinous grade.
I also had x1 micro node involved.
He said I won’t be offeded Oncotype and that even if I paid private for it and the score came back as high risk I wouldn’t be offered any treatment as they have deemed me low risk.
Despite what he said I actually have an appointment made by the hospital to see an oncologist on 11th April this came as a shock to him.
Hi I was diagnosed with mucinous cancer following self discovery of a 2.3 cm lump in right breast in 2021. Initially on observations they thought lump not cancerous but was then upgraded to very likely and confirmed by biopsy. I was told it was rare but also less aggressive so unlikely to spread to lymph nodes. However I ended up having 8 nodes removed to get to sentinel node and was told one had ‘micro- metastases’ which apparently don’t count so still classified as early stage - but this upset me as had been told it was almost certain not to have gone to nodes. I was offered choice mastectomy or radio and lumpectomy, it was all so sudden I had no clue but surgeon was very keen on lumpectomy so I felt pushed into going with that. I was then upset to learn I needed 2nd op as margins not clear and the original tumour had collapsed after biopsy and not been clearly identifiable. Radio went ok but then got a horrible rash. Now on letrizole and told I am low risk of recurrence so feel more peaceful but was a roller coaster at the time. Was never offered oncotype or chemo, was very relieved not to have had chemo. In general I believe mucinous is one of the better types of bc to get if you have to have one. Hope that helps.
Wow. I’m so sorry. Personally I don’t think this is the right thing to do since there are always exceptions to the rules but I would like to give you some information that will hopefully set your mind at ease. Mucinous is normally slow growing and low grade. That’s why he’s not concerned about it. The chances are high that they are correct in determining it has no bearing on treatment. As far as whether you should get an oncotype that’s not as clear cut and I don’t really know why they won’t offer one to you considering you had a node involved with a grade 2 invasive tumor. But in saying that the odds are quite good that it would come back fairly low so that’s probably why. Now why they wouldn’t modify your treatment if you had it done privately and it came back high is asinine. I would see if a second opinion would matter as far as that since if it was me I’d want an oncotype test, too. I don’t know how you seek second opinions there but I would try to go past him if possible because the answer he gave you was just stubbornly wrong and weird. An Oncotype score trumps his personal opinion.
