—Test for Her2
—Test for Her2 —I had a mastectomy in Oct 04 and the results were a grade 3, oestrogen neg 2.4 cm tumor, no node involvement. Chemo and radio followed. I just recently asked if I was her2. I was told that I was not tested for this as this was not routine in Oct 04. If the cancer came back I would be tested for her2. As the tumor grew from 0.5cms to 2.4cms in a space of 13 weeks I am now worried that I may well be her2.
Has anybody else asked for this test after there initial treatments finished?
Retrospective testing Hi Penny, I was diagnosed in Feb 2005, like you before HER2 testing was routine.
I asked in October, during radiotherapy, if it was possible for my ‘lump’ to be tested. The oncologist said he had to write to the pathologist, and that my lump would be tested ‘when they had time’ as the priority was for newly excised lumps to be tested.
I got the results (thankfully negative) when I had my first check-up 6 weeks after treatment finished.
I wasn’t sure whether to be happy or not, as I don’t take take Tamoxifen, so I now just have to watch and wait for any recurrence, but I was glad I wouldn’t have to have any more treatment 
Just ask again, maybe even put it in writing to your consultant,
Good Luck, Lindsay
GO FOR IT Sorry about above - got itchy fingers!
Penny, like Lindsay says, I think you should go for it. Even if there is a delay now, better that than a delay when you might really need the result quick.
I was ER.PR- but fortunately the hospital I was under routinely tested for HER2 long ago. So when I ran out of all my chemo options they checked and 2 years ago I was put on Herceptin which for me has been a life saver. My tumours all had the tendency to grow really fast. I don’t think it unreasonable to insist - in the nicest way of course!
lol Dawn
— I get even worse, thought I had posted something before the above but hadn’t.
Dawn
—will write to consultant —Thanks for the info. I will write to my consultant and ask for the test.
—herceptin Hi Dawnhc,
How did you get on with Herceptin. I am finishing chemo on thursday and am awaiting results of fish test as my initial tests for HER2 were equivicol. I am very anxious about having three weekly infusions as well as an aromataise inhibitor. How did herceptin affect you? What side effects did you have?
Jamie
Testing for HER-2 Like Lindsay I was diagnosed last year in March, but I was not tested for HER-2. My consultant said that it is not licenced for primary breast cancer anyway! So I offered to pay for the test and now I am waiting for the result. It is almost 5 weeks now. I have just heard that the Norfolk and Norwich hospital decided to give Herceptin to all those who are HER-2 positive and fulfil certain criteria. So if I am positive maybe I shall have to move to Norwich!
Which hospital did the HER 2 testing for you?
I think it should be available to all!
Zsuzsi
— Hi Jamie,
I have been on herceptin because I have mets - bones and 3 years ago a lot of lumps in my neck and collarbone - which initially responded to some chemo and then returned (lumps that is). As I was unable to have any more chemotherapies (had so many over years) and was HER2+++ I was put on herceptin - three weekly infusions. Some people do get a reaction to the first one and are usually kept in hospital 2-3 hours after treatment to be observed. The only reaction I had was very severe pain in the back of my neck. This I understand is because the drug can attack existing tumours quite strongly - it didn’t last long but was uncomfortable. After that I have not had any problems with tolerating the drug. It is not like chemo at all. The other major problem is damage to the heart. I know a couple of ladies who post on this forum and had to stop because of this but I think it corrects itself and they can go back on it. For myself I did start to have problems. The only way this showed up was through the heart scans (called MUGA) and these showed the LVEF (left ventricular ejection fraction) was falling., which means the heart muscle is weakening. The onc was very concerned and wanted to stop but, as I think I have posted elsewhere, I persuaded him to leave me on it - I would rather die from heart failure than cancer!! they did and my scans started to improve. They were done every 3 months. Now my heart is better than when I started on the drug. Personally I don’t feel it is a drug to be anxious about.
Hope this helps. LOL Dawn
To Penny Hi Penny
I was diagnosed extensive DCIS and small invasive tumour and had mastectomy and reconstruction in October. I have just completed 6 cycles chemo - luckily do not have to have radiotherapy, but like you I am Er and pr negative. I asked about testing for Her2 and they are doing this, and I will get my results at my 6 month check up.
You must insist - it is not acceptable that you have to wait for a return of cancer before they test you - never mind the controversy over getting Herceptin, that is something to be adressed if you are Postive.
Please insist and tell us how you got on - good luck
Sue
—test for HER2 —Dear Dawn,
Thanks
You are a very brave woman,
I have spent a lifetime carefully eating well lots of exercise and avoiding drugs (like so many other women and maybe you too) - I thought my body was a temple, now I find it is a pharmacy!
I await the results of HER2 and will take whatever is on offer.
jamie
To Sue test for Her-2 Thanks. I have written to my consultant and he has replied saying that he will ask if the tumor can be tested for Her-2.
I read on some website that you have to have Herceptin within 6 months of Chemo. I am now 12 months on from Chemo. Is this timing right?
HER2 testting Hi Penny,
I was dx in Jan 2003, invasive 2 cm tumour, associated DCIS, with 3/18 nodes positive. Had FEC chemo, radiotherapy and now on Arimidex. I was not tested for HER2 at time of dx but with all the kerfuffle about Herceptin decided I needed to know my status, especially if I get a recurrence.
I don’t see my Onc (see surgeon for annual check up) so wrote to Onc about testing - he replied I would have to have it done privately. I saw him for a long consultation Nov 05, paid £125 which included the testing on the original sample they had from the WLE.
I had no reply and at my annual check up in March this year mentioned it to my surgeon who said the results were in my file dated 16 Dec 2005. I was hopping made with the Onc who was too lazy to let me know the results. I was negative thankfully and surgeon, and later the Onc when he deigned to reply, said this is a better prognosis than being HER2+. So, it didn’t take more than a month for the pathologist to do the test and report, just a not very conscientious Onc. I hope you have better luck.
Liz.
HER2/Herceptin Sorry Penny - forgot to respond to your query about chemo timing viz herceptin. At the consultation I had privately with the Onc he said even if I was HER2+++ he would still not prescribe Herceptin as I was “too long down the road from chemo” - nearly 2 and a half years. He said it is only viable when given in conjunction with chemo or within 6 months afterwards. What I don’t understand is the fact that they will prescribe Herceptin for a recurrence - guess this is also only if they give you more chemo. Does anyone else know?(Daphne, JaneRA) .
Liz