I am waiting to see if I am + or - HER2
I don’t know which to hope for. what do others do /have.
I am told it could be Herceptin for 5 or 10 years or until it stops working.
any info?
g
Hi Gill
I always find it hard to explain HER2. My understanding is that it’s a protein that covers the tumour cells giving the cells more receptors than we should have, thus increasing the chances of them dividing more quickly. Does that make sense? I’m sure others will explain much better than I am.
I’m HER2+ and although it’s not ideal, at least there are now drugs that can be used - Herceptin of course being one of them.
Good luck with your results when you get them.
Gill
For primary cancer, her2 doesn’t matter so much as long as you get herceptin. It was recently discovered that her2 tends to be bad because it is a type that produces a lot of stem cells, which normal chemo doesn’t combat, but herceptin works to kill these off to a level found in other breast cancer patients.
If you have secondary cancer, being her2 positive is beneficial because there is more that the doctors can throw at it (herceptin and perhaps eventually lapatinib), so her2 positive patients with secondaries actually now live longer than her2-negative cancer patients in general. However, it is impossible to tell what will happen to any given person.
I was not tested for HER2 when dx 5 yrs ago, but after reading about it on here, wrote to my Onc asking for the test, 2 yrs ago. He replied he could only do it privately (so much for the two tier health service!) and even if I was positive, he would not prescribe Herceptin as I was too long from chemo treatment. I decided to have it privately for peace of mind. Luckily I was negative. He said that the best prognosis is ER+, HER2- - he might be right or wrong, don’t really care now, as he was so dismissive with me. He retired last December, and I still haven’t been assigned to another one. Old Onc discharged me after chemo and rads, so 4 yrs since I have seen one. My bc surgeon has been sorting out my problems, but GP recently wrote to a new female Onc for “advice” on my stopping Arimidex, instead of getting me a referral, as I asked. Needless to say, I have got another GP, who has been extremely thorough.
Great post by ChristineMH - I always feel she is better than an Onc anyway! You rock Christine!
Liz.
thank you Christine
very well put
I will know next thursday
gill
Well, to be fair, I only keep track of certain issues. ER+ tends to be better overall better. Not needing herceptin is probably a good thing, too, if all you have as a primary cancer, since all that herceptin does is help even things out.
I have been told that I will be put on Herceptin at the end of my chemo/rads. I’m confused, does this make me a + or a - type of cancer?
And from reading these comments, is it right to assume that I am more likely to develop further cancer than people who do not get to take Herceptin because their cancer isn’t + or -?
Hi Peacock
The cancer type has no bearing on whether you have receptors which are hormone, i.e. oestrogen (ER+) positive or progesterone (PR+) positive or HER2 positive.
Firstly there is the cancer type, such was invasive ductal carcinoma, lobular cancer, inflammatory breast cancer and then the cancer is analysed to see whether it is ER (oestrogen) or PR (progesteron) positive or HER2+. Some people are one of these, some people are a combination of these and some people are none of these and are described as having triple negative cancer.
There is no short answer to the question of who is likely to develop further cancer as we are each individuals and it is a bit of a lottery however certain types of cancers are more likely to come back quickly (this doesn’t mean they will do so) than others.
My cancer for example was invasive ductal carcinoma. It produced HER2 receptors so I am taking herceptin. It was a grade 3, i.e. how much it differed from normal cells. I don’t know the staging and I have never asked and don’t particularly want to know.
Hope this helps
Ruby
Thanks Ruby for your explanation re +/- and Herceptin.
I also thought the grading (ie 3) was the same as staging, so have I misunderstood that as well?
All I’ve been told so far is that my cancer is invasive ductal carcinoma, aggressive, and grade 3. I presume also that it is HER2, the reason why they’ve said I will take herceptin after all the other treatment.
Did you take herceptin along with chemo, or after if you don’t mind me asking. Thanks again Ruby
HI Peacock - mine is grade 3 Invasive dc - I am at present half way through chemo to be followed by 12 months herceptin plus 5 year tamoxifen cos mine is positive to both .
No tlooking forward to the idea of 12 months herceptin but know ive got to do it. As its another year of three weekly trips for treatment.
Leesha
Hi Peacock
It’s not easy to take it all on board and there is quite a lot to understand and some people don’t always want to know everything. I don’t actually know the staging of mine. Staging as i understand is more about taking everything into consideration i.e. size of lump, is it in the lymph nodes or vascular system and I think whether it has gone anywhere else in your body. The grading is how far removed the cancer cells are from normal breast tissue. Grade 1 being the most ‘normal’, then grade 2 and grade 3 being quite clearly very different from normal breast tissue. I can’t promise that everything I’ve said is completely right but this is from what I understand.
You must be HER2+ as otherwise they wouldn’t give you herceptin. My cancer was only HER2 positive and I had my first lot of herceptin with my 4th lot of chemotherapy and have got 5 left to go so finish in November.
Hope this helps and please do ask if there’s anything else you would like to know and I’ll see if I can help.
Ruby xx
Hi Ruby
When I visit my Onc on 18 Aug I will ask if it is better to start Herceptin with the rest of my chemo, I’ve had 3 now and have another 5 to go, so like you I should finish in November.
Are you having neoadjuvent chemo (like me)? I’ve been told that it will still be necessary to have a mastectomy as the original tumour was large and aggressive. Will you be having rads too?
As I am in France its just interesting to compare whether treatment here is different to UK, but of course because of language problems I always look to this site for guidance.
I’ll be quite glad to have a “mid way” mammogram and ultrasound next Friday, just to see if the taxotere is shrinking the tumour.
It’s all so worrying for us all.
Thanks again
xx
Hi there Peacock
I think our timescales are slightly different though as I finish my herceptin this November. My treatment all started last year in July 2007 when I had 6 lots of chemotherapy which were 3 FEC and 3 TAxotere. The herceptin began with my 1st Taxotere and has continued every three weeks although it was stopped for 2 months due to having a very low white blood count and the oncologist was a bit unsure and didn’t want me to have it until my blood sorted itself out. Well my blood didn’t sort itself out but I persuaded him to let me continue with the herceptin which is why I’m finishing this November instead of now (August). I then had an operation on 21st Nov 2007 which was a mastectomy and all lymph nodes removed. I then had 3 weeks of radiotherapy. My lump was large 4-5 cm and the whole breast area had a lot of DCIS (ductal carcinoma in situ). I am pleased I had a mastectomy because I feel safer this way. They got 7mm clearance around the DCIS when the breast was removed and they say that is good clearance. I also had a very good response to chemo and the lump shrunk to 7mm. I also had a lump in my armpit and that had also shrunk a lot. Apparently (I have only just found this out) I had several abnormal lymph nodes although when the lymph nodes were removed, only one showed a little cancer still left. Whether the chemo did a brilliant job and got rid of the cancer from the lymph nodes or whether they were abnormal for other reasons, I shall never know.
I would be very interested to hear what treatment you are having because I often wonder whether I’ve had enough. My oncologist tells me that he overtreated me so that does make me feel a little better.
Good luck with your mammogram and ultrasound on Friday.
I look forward to hearing from you again.
Ruby xxx
Hello Ruby
Initially I went into hospital to have a pyramidectomy (I think the English term is a microdectomy) because I had a massive swollen, painful breast and also bleeding from the nipple. The mammo and ultrasound I had had didn’t pick anything up so I was told it was nothing serious, just a simple operation to remove the ducts.
Wrong! The surgeon realised as soon as he opened me up that something was wrong and the analysis showed it was cancer. When I was told the news I asked if they had done a mastectomy and was told “no because it wasn’t the right time”, nor had lymph nodes been checked. Alarm bells rang for me, after all he had already opened me up so why on earth didn’t he do the job there and then - but now I realise that possibly, for me anyway as it was large and aggressive, maybe chemo was best first. The wound I have, although not very big has not healed very well and yet normally I heal pretty good.
I saw an Onc a week later, who incidentally spotted the cancer straight away from the mammo & ultrasound. It had grown a lot since those were done in only a period of 5 weeks. It was then considered to be Stage 3, and aggressive. I asked the Onc what the prognosis was and he wouldn’t give one.
I was told I would have 4 x taxotere and then 4 x something else (3 different types of chemo together), 3 weeks apart. Following that a mastectomy when they would check lymph nodes, then radiotherapy. I’ve since been told that I will probably have Herceptin after all that.
So as I’ve started on taxotere I don’t know if the next chemo can be given with herceptin, but I will ask when I have my 4th taxotere on Monday 18th which is when I see the Onc again too for the results of all the tests…
I find it a little bit confusing, at this stage, how they will know for sure that I will still need a mastectomy, as if the tumour shrinks surely that won’t be necessary. I have got my head around having to have a mastectomy and in a way I want to so as I know the cancer is removed. The other thing is, surely having chemo first means they will never know how many lymph nodes may or may not be affected? So were yours removed just to be on the safe side, as you only had one that was affected?
When you had rads, how do they do it without actually pointing it to a lump if you’ve already had a mastectomy? Do they do the general area?
I suppose I was just hoping that the chemo would be brilliant at shrinking the cancer to the point of non existence but as I learn more I realise that is pretty naive.
I know there are a few of us on this site who have chemo first before mastectomy, but, in general in the UK it still seems to be the other way around doesn’t it?
Speak soon, good night
xx
Hi Peacock,
I have just had my third Taxotere after 4xA.C…not without incidence I had my 2nd reaction whilst having it!!
Mentioned to you before about worrying whether it was shrinking or growing ( my tumour was 4.5cm. and very aggressive) my onc is now a little concerned also, but thinks my tumour may have
“hardening” around it and possibly the tuomour is breaking up underneath. I am sure there are better medical terms for all that but thats how he explained it to me.
However he is taking no chances and has arranged a meeting with himself , my surgeon and me in two weeks time so they can examine me together and possibly bring my op date forward.
Interesting that I have always been told I will have a mastectomy and yesterday he mentioned lumpectomy, when I questioned it he said things are changing all the time, but need to see surgeon, and also final decision could be mine!
As far as hereptin is concerned I will be having it for 12 months. Because I experienced breathlessness on Tax, I wont start until after op. as it can affect he heart. also if you start before, you need booster sessions twice instead of once which wouldnt be good in my case.
Finally I am still paraniod about lump…sure it`s gone down today!! but how can it possibly go down overnight… just shows the state of my brain!!
Take care,
Janx
Hi Jan
Not spoken for a while.You seem to be having same issues I had on Tax, if you remember mine started to grow again and they cancelled last one to bring my op forward.I started Herceptin week before my op and I only had one set of boosters.Had no 7 yesterday and all going well.
Hope things are ok
Take Care
Mary
xx
Hi Mary,
Yes, I seem to be following in your footsteps, I remember you had a scan to find out if yours was changing, my onc doesnt feel it necessary?? Would just love to know whats going on!
but also have great confidence in him.
Glad to hear Herceptin is going well, can`t believe you have had no 7 already, also I always read your posts and so pleased your finally had your “delayed honeymoon” which sounded wonderful… you certainly deserved it.
Also congrats on your new position, its so reassuring when everything starts to get back into place, Im really pleased for you.
No 3 Tax appears to be a bit gentler for me so far, only day 5 but it`s usually kicked in by now, fingers crossed!!!
Take care,
love,
Janx
Just thought I’d update.
I’ve had loads of mammograms, ultrasounds and xrays today, firstly to check if the cancer is shrinking and secondly to try to find out why I have been suffering from pains in ribs.
i can’t say how thorough they all were, and I am pleased that the cancer is now 4 cm instead of 8 cm, after 3 taxotere. The ribs and all other organs are fine from ultrasound, nothing untoward was found except that the breast with cancer has “calcification”. I’m not sure what this means,or what the French translation is for that word, but basically even though the tumour is shrinking I will still need a mastectomy because there is so much abnormality in the breast to take a chance to keep it.
I was also started on Herceptin today and the next one will be with chemo no. 4 in just over a weeks time and this will continue for the next year.
So, all in all I think it was good results so I have plenty to be pleased about.
Hi Peacock
Really pleased to hear how well you have responded to the taxotere. I also had calcification and even though my tumour shrunk a lot, I was always going to need a mastectomy. it is dangerous to leave the calficification or at least that type which I’m guessing is DCIS (ductal carcinoma in situ) which means it has the potential to turn cancerous but hasn’t yet. Not all calcification is DCIS some people just get harmless calcification with age. I’m pleased to ;hear you have started herceptin now and I think you’ll find it easy when you have it on its own.
Very best wishes
Ruby xx