“I’m a 45-year-old man, I live in Spain. In August 2018 I felt a lump in my left breast. I was worried right away because it seemed a bit weird, so I had a mammogram and an ultrasound at my local medical center, with the following result: “fibro glandular tissue” nothing to worry about for them and end of story. Then came the pandemic and I forgot about the issue until the nipple started retracting in the summer of 2021. I went back to the same center and this time they did a biopsy. Result: infiltrating carcinoma of mixed type Luminal B, grade2, ki67: 34%, Er+, Pr+ Her2-.
From that moment on, everything became a chain reaction: CT scan + MRI + bone scan (all of that with contrast) : negative for metastasis. I got surgery at the end of September 2021-mastectomy – with negative margins, no microcalcifications, and, after 15 days, pathological analysis defined the TNM: T1c(was 1.6cm) N1mic (micro metastasis in the sentinel lymph node) M0 (zero metastasis) and, most importantly, my cancer was not mixed, like they thought at the beginning, but lobular.
My stage was 2A, and as it was a fast grower, they gave me dense chemo (4 doses anthracyclines spaced 14 days apart) + 12 Taxol weekly. I didn’t suffer so much from the nausea (I almost didn’t have it) rather from my heart with continuous arrhythmias which then were resolved with the end of the chemo.
For a young, healthy man of 45, the implication of a genetic factor was quite obvious, and after analyzing 10 different genes, they nailed it: CDH1 (and I also have a BRCA2 with a VUS – variant of unknown significance). This gene, in addition to lobular breast cancer, also causes hereditary gastric cancer, which is sneaky and can be lethal: oncologists ‘recommend’ a complete gastrectomy, which I have to think about seriously, but that’s a separate issue, in fact I’ve joined the group “CDH1 mutation gene” in Facebook.
Of all breast cancers put together (men women), male lobular cancer accounts for 0.02% of cases.
If I hadn’t had breast cancer, I wouldn’t have discovered the genetic problem and if it all started with stomach cancer I might not be here anymore, the oncologist told me that they want to take action before I show symptoms because if I did, it would be too late.
My mum had the same lobular cancer in 99, with no lymph nodes affected and after 25 sessions of radiotherapy she is still here. My brother had advanced melanoma when he was my age and he’s still here too…and luckily, not affected by this gene. I’m currently taking tamoxifen which, so far, has not given me any side effects.
There is so much to learn about this subject, and I have done it little by little, I realize that I knew absolutely nothing about it, I thought there was only one type of breast cancer that affected women, so finding out all this, was more than just a bolt out of the blue. What comforts me is that science is advancing and although I don’t know if I will be able to declare myself ‘cured’ at least I know that it can be treated.
In the meantime, I hope to be able to share my doubts and answers with you, to find out what is new in science, to inform, to be informed…good day to you all!”
Sorry for the lengthy mail…. as you can read I am also affected by a gene mutation which can dangerously affect my stomach, so I also subscribed to the “CDH1 mutation gene” group. As I live in Barcelona, I know there’s an association called “INVI” for males with breast cancer, I will contact them as soon as I get back to Spain.
I remain available for any information, my name is Roberto