I was diagnosed with breast cancer in February- mucinous type. Would anyone know if there is an oncologist with experience/ special interest in this type of cancer in the UK? A huge thank you,
Sorry for the delay. Had second surgery to shave off more mucin, surgeon wanted to be sure that the mucin had no cancer cells lurking and so that is what he did. I spoke to him on the monring of the surgery and he said gets less than 3% of Pure MBC. He also said its not easy to see on a mamogram. Done a great job scar very neat.
I saw him again on Friday and he confirmed that nothing in the mucin and that there was only mucin in one of my LN not viable tumour cells.
Seen oncologist today and asked her a great many questions about this type. Confirmed its Pure and these are usually ER and PR receptive not usually HER2 positive like mine. However my outlook is good and I have my RT to come next month and am going to try Kadcyla every 3 weeks to start with (this is Trastuzumab emtansine). This is because there were scanty cc left after surgery in breast and this drug as opposed to Phesgo (Trast and Pert) gives me half as much again of protection in my case. Its hard to tell how much it will benefit me as opposed to Phesgo. This has to be adminstered via infusion not under skin injection. If I get the side effect such as neuropathy then I will revert back. We had a long discussion and I decided to try it as any amount will help. As its a type of chemo will need the blood checks every three weeks and will be careful of infection. Dont need the pic line this time!! So thats me until next summer!
Also got a prescripton for 5 year estrogen blocker,
Will let you know how it works and thank you for asking.
Lovely to hear from you. Sounds like you have a great surgeon and I'm glad he was so honest with you and did a great job. I'm glad he confirmed mucinous cancer is hard to see on mammogram, I've read mri's are better at detecting mucinous, but I've never had one. Pleased it was only one positive node, although none would have been better, I'm sorry for that.
I still don't actually know if mine was pure or mixed. I keep asking but no-one confirms. What I've read about it says if it's mixed with another invasive then it's mixed, but both my tumours were within a bed of dcis and so I'm still not clear on that and I know mixed doesnt have as good a prognosis as pure. It's still one of the better ones though. I think I already said I was hormone positive and her2 negative.
Did you have one tumour or more? How large was it/they? My main one showed as 16mm on ultrasound but was 24mm on op. The baby one was not seen and only 4mm, so I wonder if that grew between the three month wait of disgnosis and masectomy?
Please keep me posted re how you get on with the treatment. Private message me if you'd prefer.
Are they putting you on tamoxifen ? I'm on Anastrozole. sending hugs and good luck positive thoughts for your RT and Kadcyla.
I was just wondering how big your mucinous tumour was in your primary site and then how big by the time you found the mucinous tumour in your second primary site a year later. I assume the fact you were on tamoxifen may have made growth rate slower again for second tumour? Trish's comment about having had a 2.5mm tumour identified on a mammogram three years previous has got me thinking how fast this type of tumour actually grows. As you know I had a second 4mm tumour found during my op and I wonder if that grew from diagnosis to surgery. I also wondered how big a tumour has to be for them to be able to successfully do a core biopsy on it. We all know that's the only way to be sure with this type of cancer.
hope you're well and hubby is making some progress now.
I had a great holiday thanks and I hope that you did too.
My primary tumour was 13x8x12mm. It had not been noticed at the time of my routine mammogram and I found it myself , when I was having a shower. I had mammograms and ultra sounds of both breasts when I first attended for diagnosis. This showed a lesion in the right breast only. It was pure mucinous, no DCIS present, but some fibrocytic changes were seen in the background breast. Lymphovascular invasion was not identified. The 6 axilliary lymph nodes removed were all obtained and none of these contained metatastic carcinoma. I had a lumpectomy, followed by Tamoxifen for 1 year. At this time, I was also advised to have radiotherapy, but this never happened, due to various operational delays. I was ER & PR+ and HER2-, which is pretty typical for pure mucinous cancers.
At this time I was informed that, if I had to have cancer, this was the best type to get, as it was slow growing and was unlikely to recur.
Six months after this, I discovered a lump in my other breast. This was 1.4mm. Although my surgeon was pretty sure that this was cancerous too, my biopsy did not indicate this. Fast forward another six months and I discovered yet another lump in my original breast. This was 12 mm. My surgeon was happy to carry out a double mastectomy, as he thought that the lump in my left breast could have been pre-cancerous. I then took Letrozole for 6½ years.
I may be wrong, but I suspect that all tumours will grow at different rates, depending upon the metabolism of the individual.
Morning Jolamine, apologies for the delayed reply. Thank you for confirming the size of your tumours and all the information provided.
Can I just clarify what type of biopsy and how many they did on the smaller 1.4mm tumour? As you know they found a second small 4mm tumour during my masectomy. In later discussions they have told me 4mm is too small to get an accurate biopsy and they would be blindly stabbing at it. I took what I was told, but I can't find any info on how large a tumour needs to be to get enough to accurately confirm cancer ?
Holiday was good, thank you and im glad yours was too.
This rollercoaster sure keeps spinning and I keep spinning with it, but I'm here, that's the important thing.
