More info for BJJ
More info for BJJ Me again!
Hope you read my reply about your lumps the other day. So pleased that you had nothing to worry about.
Have now spoken to a pathologist – a very nice lady – but I still don’t really have the answers to my questions, as this HER2 business is still such a new thing to the profession.
Apparently, my core biopsy (which contained both DCIS and pieces of the tumour) was sent away to be analysed. They are able to differentiate between both parts, so only the cancer should have been tested. The result was borderline (though just positive by FISH), but as I have said before, herceptin would only be of minimal benefit to me. Of course, if the damn thing came back, at least that could be held in reserve.
I have probably gone as far as I can with this, so must now try to put it to the back of my mind. There must be countless healthy women walking around who had breast cancer years ago, and unbeknown to them are HER2+. This is what I must keep a grasp of.
Thanks for all your support.
Mcgle
HI Hi Mcgle
Sorry it’s taken me so long to reply to your posting - have had a busy few days. My son went back to Uni yesterday and I seem to do quite a proportion of his sorting out etc!
I am really pleased to hear that you managed to speak to a pathologist. I think some of the medical profession don’t realise that some of us like to find out as much as we can about our cancer and that it helps us to cope with it. I’m defintely someone like that - whereas when my Mum had cancer she didn’t want to know anything and never questioned a thing.
The FISH test seems to be more accurate/conclusive than just IHC testing so if you are positive on the FISH test then you are HER2 positive.
It is important to know that because if the wretched thing comes back at least we won’t have to waste time demanding and waiting for HER2 tests.
I found it very hard initially when I was told that I was HER2 positive and then found it even harder when I found about my negative result - the whole thing was so unsettling. I do understand how you must be feeling. It took a while for it all to sink in - I am now as OK as I can be about it, I’m probably postive but there’s no other treatment I can have at the moment and I know that I have done what I can to find out more about it and to make sure that I have had the right treatment. The percentage of recurrences for my type of cancer is pretty much the same as the percentage of HER2 positive cancers but my oncologist has assured me that on testing not all recurrences are HER2 and therefore statistically that means that not all HER2 people get recurrences. I accept that it is more likely if you are HER2 to get a recurrence but that it is not inevitable. Like everyone else I fear a recurrence but I don’t think my fear has got any worse because I might be HER2 positive - I think I would fear it anyway.
I hope you manage to get it sorted out in your head - if I can help anymore then just please say.
Love
bjj
Thanks for that, BJJ Know what you mean about getting a child back to university on time, as my son graduated in 2004, and my daughter went back on Saturday to complete her first year. In neither case was I allowed to get involved in the packing process, just the paying¦
Talking about daughters, do you have one? I only ask because I have read on one of the websites that the HER2/neu gene problem is not the inherited kind that you get from a mother or a father. It happens sometime during the wear and tear of living. The pathologist could not comment on this, so I just hope it is true.
I just have to accept (like you) that I have had the right treatment for the knowledge which is available now. They simply do not know what significance (if any) low level HER2 gene amplification has for a tumour with good prognostic indicators.
We are so alike in wishing to know all we can about our particular cancers! I drive everyone mad with this need, but my husband thinks the medics have been very patient with me. They could so easily have pooh-poohed my concerns. But I also think that, from a professional point of view, they need to investigate anomalous cases such as mine.
You must have gone through hell with such inconclusive results! I do feel for you. But at least your onc has assured you that not all recurrences are HER2+. That’s another thing I didn’t know!
Reading your profile, our cases look pretty similar. Was yours ductal? We were also diagnosed in the same year, so it will be good to keep up with eachother to compare notes. That’s the great thing about this site, we can ‘talk’ to people who have ‘been there’. Not that either of us want to go down that route again!
Kindest regards
Mcgle
PS Sorry to hear about your mum’s cancer. Is she alright now?
Mcgle
Hi Mcgle I do have a daughter - 16 year old. I was heartened to hear from you that HER2 cancers are not inherited. I worry about her getting it. My partner lost his ex-wife to breast cancer (they were divorced and she had remarried) so he worries about his daughters too. She died 6 years ago so we have no idea whether or not she was HER2.
My onc was quite adamant that not all recurrences are HER2 - she told me that all recurrences are tested for it and that they are by no means all positive - just realised I didn’t ask her what the percentage was - oh well, another question to put on my list for next time!
I drive people mad too about wanting to know all about my cancer. When I was researching HER2 (this was after being told I was positive and couldn’t have Herceptin but before seeing onc for explanation) I did get quite worked up - but at least when I went to see my onc I knew what questions to ask. She used to dismiss and brush off my questions but now knows that I am much happier knowing ALL the ins and outs and even made a point of phoning me after she had attended a breast cancer conference in USA to tell me on latest findings. We have a good relationship now. I guess that some of their patients don’t want to know and perhaps they need to be sure who does and who doesn’t want all the info. I know that my Mum didn’t want to know and it probably wouldn’t have helped her (made things worse even for her) if she had known more.
Our cases were pretty similar. My cancer was ductal - no vascular infvasion and I did have an area of intermediate DCIS all of which apparently they managed to remove. You are right - it would be good to keep up with each other as our cases as so similar.
My Mum had bowel cancer and sadly died of it 6 years ago. She ignored all the symptoms literally for years - until she was really ill and in a lot of pain. When they opened her up her liver was covered - the surgeon said that it was the worst case of liver cancer he had ever seen. They didn’t expect her to survive the op but she did and she went on to have a further 3 1/2 good years. As her liver cancer was so bad she was referred to the Middlesex in London for some new laser type treatment and very new chemo and it helped her no end. I was paranoid about getting bowel cancer and I as have mild IBS (not too bad these days) I have a colonoscopy every three years. The one 6 years ago was fine, the one three years I had a pre-cancerous polyp removed - apparently it would have turned into cancer within 8-10 years. I always thought that I would end up with bowel cancer so breast cancer was a bit of a shock. Just coming up to another colonoscopy and I am a little on edge about what they might find this time!
Best Wishes
Love
bjj xx
So sorry — — to read about the impact the ‘c’ word has had on your family life, BJJ.
I will reply in full later when I have more time.
Kindest regards
Mcgle
Response from Mcgle Hi BJJ.
Sorry I haven’t got back to you before, but have just returned from a short holiday - something which didn’t happen last year for obvious reasons!
I am the first one in our family to get breast cancer, and the last case of any type of cancer was my maternal grandmother back in the 50s. So this word has been unfamiliar to us until now! But you and yours have had a really rotten deal; I just hope that this will now be the end of it for you all.
It was reassuring to read what your onc said about recurrences, and that not all are HER2. We are both fortunate in having oncs who listen to our concerns and tell us what we need to know (good or bad!). But I am concerned that some HER2+ women in the US seem to be treated aggressively for this type of cancer (chemo and herceptin) even when prognostic indicators seem good. Now I know every case is different, but it does make you think!
I don’t know whether it’s better to know that you are definitely positive or (as in your case) you might be!! But in any event, each and every one of us has to live with the fear of recurrence.
In a few weeks time, I will be quizzing my onc about continuing with tamoxifen, given that I am post-menopausal (therefore could take arimidex). There seems to be some controversy about taking tamox, having had an HER2+ result.
Thanks again for all your advice.
Mcgle
PS Good luck with your forthcoming colonoscopy.
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