Mucinous breast cancer
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4 posts since
30 Mar 2021
Hello,
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,
Hattie
5922 posts since
15 Jul 2010
Hi Hattie,
A very warm welcome to our forum. I am afraid that I cannot help with your quest to find an oncologist who specialises in mucinous breast cancer. I was diagnosed with this 11 years ago and, at that time, found it almost impossible to find out anything about it. My consultant advised me that, if I had to have breast cancer, this was one of the best types to have. So far, I’m glad to say that he was right, as that was 11 years ago and, I am still here and leading a busy and fulfilled life.
There are a small number of us on this site who have mucinous breast cancer, so don’t be afraid to ask questions and, we’ll answer them if we can.
Please keep in touch and let us know how you get on. We are always here for you.
Kind regards,
Jolamine xx
4 posts since
30 Mar 2021
Hello Jolamine,
Thank you very much for your reply. It is great to hear that you are doing well.
My concern is that it seems hard to detect. Was it the case for you and other people with mucinous cancer?
I had a lump which was not identified as cancerous when I did first mammogram and ultrasound. They thought it was nothing. Only the biopsy confirmed it was cancer. Now I have had the lumpectomy they were surprised to find that the lump was surrounded with DCIS…that was not picked up before either, and I did have an MRI scan before the surgery.
Is it normal? Is it because the people dealing with it are not familiar with mucinous cancer?
Although I am at the start of my journey I am really worried that future checks will be useless unless there is a lump and they perform a biopsy.
xx
5922 posts since
15 Jul 2010
Hi Hattie,
It is understandable that yours was missed with both scans. I am not a doctor, but I discovered that a little less than half of all mucinous carcinomas will be seen on a breast ultrasound, and the smaller tumours tend to hide within fatty tissue. A mucinous carcinoma of the breast will often appear on a mammogram as a mass with distinct borders, having a bumpy shape. These can sometimes look like benign masses on a mammogram.
Mine was missed on my routine mammogram, but was picked up on both mammogram and ultrasound at the breast clinic. Only 1-3% of people get this sort of cancer. My surgeon told me that he only sees 5-6 cases per year and my oncologist said only 1-2 or fewer. Even though a lump can be detected by scans, the only way to be certain that it is cancerous is to carry out a biopsy.
What I found so difficult to cope with was the discrepancy between my need for information and the lack of communication of information from my care team. I appreciate that they may not have known much about mucinous cancer then, but there are resources for rare cancers which they could have recommended.
Like you, I became very frustrated that, even when I researched this, my care team was unhelpful and it took some time for them to pay credence to some of the research I’d highlighted. I also found that the information that they drew on was selective. I am pleased to say that eventually, my care team finally began to pay credence to some of the research I’d highlighted, but I only wish that they had done so sooner and I found the information they drew on was selective.
Now that you have had a biopsy and your cancer has been confirmed, you will find that they know where to look for changes, so there sould be less likelihood of missing this on scans in the future.
What treatment are you having post-lumpectomy and how are you coping with it?
Kind regards,
Jolamine xx
4 posts since
30 Mar 2021
Thanks for this Jolamine. I guess at the moment I have only met surgeons, not oncologists and, like you, I am craving for information.
When you did your research, were there some good websites you would recommend? Although I am trying to keep away from Internet…
It looks like after lumpectomy I will have a mastectomy as the DCIS needs to be removed and they don’t know how much there is… The size of my breast is another factor. I haven’t had my HER2 result yet but they were talking about chemotherapy. Other receptors were positive so I will also have hormonal therapy! The only positive thing was that my lymph nodes were clear. I am quite overwhelmed with all this!
Every cancer is different but what kind of treatment did you have? Xx
5922 posts since
15 Jul 2010
Hi Hattie,
There are so many unknowns at this stage that I found it all very daunting. I craved information, which I couldn’t find in the UK, but that was 11 years ago and I would hope tha it’s a little easier now. I eventually found most of my information in the USA, which was helpful, even though diagnosis and treatment protocols can vary between the two countries.
I am surprised to hear that you are considering having a mastectomy after a lumpectomy. Would you not be better to have the mastectomy and get it all over and done with in one go? My breasts were a size 44C to start with. I initially had a lumpectomy, but had a recurrence a year later and had a double mastectomy. I took Tamoxifen for the first year, but changed to Letrozole the second time around. I took this for 6½ years. I stopped taking this in 2017. One good thing about Mucinous cancer is that it seldom spreads to the lymph nodes.
My surgeon was very surprised to find that mine had returned. All surgeons send the tissue removed at the time of an operation away to pathology for analysis. When the results are returned, the pathology report will confirm whether or not a clear margin has been obtained at the time of surgery. Mine came back saying that he hadn’t achieved clear margins, but my surgeon assured me that he had been aware of this at the time and had taken another sliver away. As a result of this, he said that he was positive that my margins were clear. I now suspect that he hadn’t managed to get a clear margin despite his assurances and, that this was why I found the second cancer – the benefit of hindsight is a great thing.
I was also advised to have radiotherapy, but 6 months after my original operation, I discovered a large lump in my other breast. Fortunately, this turned out to be benign, but my surgeon and I had a Mexican stand-off for several months, when he refused to test my breast and I refused to have radiotherapy on the basis that there was no point in treating one breast, whilst ignoring the other.
Eventually, my surgeon referred me to the surgeon in charge of all the surgeon’s in the area. He agreed to test my lump and offered to take over my care. I accepted his offer and we discussed the benfits of having radiotherapy at that stage. He referred me to 2 specialists in radiotherapy research. One felt that I might as well try it, but the other appeared more knowldgeable and advised me that there was no point in having it then. His advice was that there was no point in having it any longer than 3 months after surgery. I took his advice and never had it.
I find that the scarring on the breast that has had both operations is more unsightly than the one that only had the one, which is why I was asking you why you are considering having both procedures.
Kind regards,
Jolamine xx
4 posts since
30 Mar 2021
Wow Jolamine, what a journey. I find it incredible they would not treat both breasts at the same time initially. Glad they did eventually! Did you have reconstructive surgery straight away?
i have had the lumpectomy already, but they discovered the DCIS when they sent what they had taken out to the pathologist. That’s why the next step is a mastectomy…DCIS was not picked up on MRI, ultrasound, mammogram.
I will continue to research information, it is still the start of the journey and it is so hard to get the full picture!
Thank you for your messages xx
5922 posts since
15 Jul 2010
Hi Hattie,
Yes, it was quite a journey. I must admit that I felt so much better when I changed surgeons – you really do need sa care team who you have confidence in.
Unfortunately, due to previous non-cancer-related surgery, I was unable to have reconstruction, but I manage well with an assortment of prostheses for different activities.
What a pity that your DCIS wasn’t picked up until you had your pathology results. I was the same. I don’t have DCIS, but I did have fibrocytic changes, which only showed up in my pathology results.
Please keep in touch and let me know if you finf anything of interest.
Kind regards,
Jolamine xx
Mucinous breast cancer
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