I’m 29 and i recently had my boob off because they found grade III 17mm and 12mm lumps in my there. And i made that decision to have it off because i’ve got small breasts and also so i wouldn’t have to have many more treatments afterwards.
As it turns out no lymph nodes were involved and no vascular invasion as far as they can see! But it was surrounded with 11mm of DCIS. Now the cancer was all + and herceptin +. They’ve told me in order to have herceptin i need to have chemo. Why is this, i really don’t want chemo, because i want to have children and it will only 6% difference anyway. But i would like to have herceptin, i don’t understand because they give the drug to secondary cancers without chemo, but not to primary, or so i’m led to believe.
Do any of you guys know anything about this?? Do you think i’d have a case taking this to Mr Brown!??
I have put for you below links to two of BCC’s publications which you may find useful to read. If you would like to talk to someone in confidence about these issues then please do phone our helpline where you can talk to one of the nursing staff here. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2.
Just thought I’d let you know about my situation. I’m also 29, had mastectomy last week after a lumpectomy and then a further margin shaving. Also had axillary node clearance, thankfully only 1 node involved. Mine is all hormone positve but herceptin negative. I’m having chemo, radiotherapy and then tamoxifen for 5 years.
Like you I was concerned about fertility, especially having just got married and about to start planning for a family. We saw a fertility specialist who mentioned some jab I’m going to have to protect ovaries a bit. She also said that chemo doesn’t wipe out your ovaries as such, just reduces the egg count alot. I higly recommend you get a referral to a fertility specilist to discuss things. We were offered IVF (at our expense as I’m under 30) but we decided not to go down that line. Age is on our side though as we have a higher reserve than someone in their mid-late 30’s.
Personally I decided I wanted chemo to really bosh this thing and to reduce the risk as much as possible of it returning. It is a tricky situation but you have to think about your life now. Again I highly recommend getting referral to a fertility specialist. 6% may not seem alot but if you think about the stats of someone of our age having BC, I’d say it’s worth it(but that’s just my opinion).
Additionally if your oncologist says no, get a second opinion. They’re looking out for your best interests at the end of the day, I don’t believe it’s a primary/secondary cancer decision with regards to herceptin, more what is appropriate for the particular patient and what benefits there would be to them and preserving life.
I was told I didnt need chemo until I got my HER2 result which was 2+. Then I was told I could have chemo and herceptin but that together they would only make a 3% difference. I opted not to have it, but for a 6% difference I would have, in fact I think they would have advised me to. They did however say that I could not have herceptin without having chemo first
I have one chemo to go and have also had my first herceptin. For primary breast cancer it would seem that herceptin is even more effective if you have had chemo first. I am not saying it is less effective if you don’t have chemo, but I haven’t heard of anyone having herceptin that hasn’t had chemo for primary breast cancer. My ONC starts herceptin with the last 2 chemos (in my case cycle 7 and 8). Everyone is different and different hospitals do it differently, but I was told as I was under 40 chemo would give me a better chance.
Give the ONC a ring and discuss.
As far as I know you have to have chemo in order to get Herceptin. I too had the last two chemos with Herceptin and didnt notice any more side effects. Indeed there is some speculation now that it may improve things but I think trials are ongoing on this one. I was told Herceptin would make a 7% for me. Its all very confusing as all the publicity implied it made a 50% difference but different from what? Grade? Without Chemo? There seem to be so many variables with it all. I also was never told my HER2 score. Other than again I thought you had to be HER+++ to get it. Anyone know on that? ie do you get it on a score of 2 and 3.
The current thinking seems to be that herceptin works better if you have had other chemos first & that is the NICE guideline at the moment. However my onc said he thought herceptin would be offered without other chemos in the future for primary breast cancer,but he couldn’t say when. I asked about this because I didn’t have chemo (only have made a 2% difference) but I am Her2+.
It appears that everyone at my hospital kinda fobs me off when i ask for Herceptin but don’t want to have chemo. They just say no that’s not the way they do it…WHY ?
I don’t understand?
It is supposed to be our choice which treatments we, isn’t it?
My friend, who is a breast cancer specialist, explained it to me in simple terms like this.
Chemotherapy is used to kill existing cancer cells which may have broken away from the original site and be too tiny to detect with scans etc. Herceptin is used to prevent new cancerous cells developing. So the two have very different functions.
I assume the reason NICE recommend only prescribing herceptin with or after chemo is that it won’t be as useful in cases of primary cancer if there are already cancerous cells still present.
HER2+++ cancers are generally quite aggressive and good at breaking away. Accepting any treatment offered is very much a personal choice. I wanted to make sure I got rid of as much of the cancer as possible and had the lot.(chemo, surgery, rads and herceptin)