Hi, I am interested to make contact with others with PALB2. I was diagnosed in November 18 and I am currently at my 5 year point after Breast Cancer. Waiting patiently to be seen about the PALB2 as appointments are bit behind up here (morecambe Bay hopsital trust), and letter about going on high risk register seems to have got lost in the post from genetics team (groan). So what experience have others on here had once diagnosed for PALB2. So far I have:
Been told no need to alter treatment - just 20% increased risk for my lifetime of a recurrance and just need surveilance rather than surgery (I had lumpectomy in 2014 and I am reasonably content with that advice)
To be put on high risk register but not clear if that will be just mamograms or include MRI and Ultrasound (which I would prefer). I am aged 55 by the way - that might be relevant to this bit. I’m getting twitchy about being made to wait so long for a review from Breast Care team given diagnosis was 9 months back!!
No need for ovarian removal but I have ignored that advice because mum died of ovarian cancer so I am planning with surgeon to remove ovaries and tubes. That reduces risk to 0.01 percent which in my view is a no brainer (ovarian is not the way to die)
I have told about the increased pancreatic risk (only 1% increase) but been offered no scans or tests for that. My doctor says don’t be fobbed off with blood tests for any of the above (they are notoriously unreliable she confirms) and the only way to see if Pancreas is ok is a full body scan every two years.
Anyone else got similar or contrary advice. (I’ve had a bit of advice too from Marc at Cambridge research who is top man in UK).
website facebook page PALB2 Warriers makes this PALB2 issue a whole lot more serious than we seem to be taking it in the UK - led by americans but becoming more worldwide audience on that page and it scares me to see the drastic action those ladies are all taking. Its fully hysterectomy and removal of breasts straight away as young as 25 years of age. Horrific!!
we are in a very similar place - i had a lumpectomy in 2014 , just radiotherapy and then thought that was that. i asked to be tested for the BRCA1 and 2 genes although they weren’t keen to do that (despite family history) those tests came back negative but 3 years on I was told i have the PALB2 gene. big shock to be honest as i had forgotten all about it.
I’m considering a double mastectomy soon, also to do with the fact that I have real anxiety at mammogram time and that would be the end of those and the awful wait for results.I have seen my consultant who said it was “probably” a good idea, plastic surgeon has said i can have the tummy flap or implants but pros and cons to both of course, very undecided at present. i am 53 .
Have to say things have been a lot quicker for me - i could have had my op by now - if i knew which to go for. xx
I have just joined this group after recently being diagnosed with breast cancer for the 2nd time.
I first had breast cancer in 2003 aged 49, I had a mastectomy and I asked for genetic testing. My reason for wanting the test was that my sister also had breast cancer but unfortunately, she died from it aged 35 leaving 3 little girls aged 7, 4 and 19 months, a first cousin also had it and my paternal grandmother. I was concerned it was hereditary because of the girls and also my own son. It was about 18 months later when I got the test results, I was told that although I did not have BRAC1 or BRAC2 the cancer may still be hereditary because there may be a gene that had not yet been identified.
Sixteen years later a letter arrived from the Genetics clinic telling me that a new breast cancer gene had been identified, PAL2B and I had it. I arranged to see a counsellor and it was all explained to me and I contacted any family members who I though could be affected, a couple of cousins took the test and fortunately neither had the gene, my nieces , as yet, have not been tested, they are all adults. I was not too surprised by the news that the breast cancer was hereditary, my Mom also had it in 2003.
I had my 3 year mammogram in November and it came back asking me to go for more tests, I had another mammogram, ultrasound and core biopsy, I got the results of these on 17 December. I have grade 3 cancer in my remaining breast. My consultant said I can have a lumpectomy followed by radiotherapy, the ultrasound did not show any signs of cancer in lymph nodes so didn’t think I would need chemo. I think I would prefer a mastectomy.
I asked the consultant if I could have my treatment at the hospital where I had my previous treatment (moved house and got sent to a different hospital) no disrespect to where I got my results but would just feel more comfortable in familiar surroundings. This has been arranged and I have an appointment with a consultant there on Monday morning. I shall discuss having a mastectomy with him even though the other consultant assured me that a lumpectomy is just as good. My sister had a lumpectomy 30 years ago with no immediate follow up treatment and within 16 months she died because the cancer spread so quickly and finally went to her brain. I know breast cancer treatment is so much better now but I think I would feel safer with the whole thing removed.
I do admit I am shocked that I have it again after so long and think it was so strange that I only had the letter about the PAL2B gene a few months previously, it was almost like a warning not to get too complacent.