Unfortunately I was diagnosed with BC on Friday 13thJune2008. It has been the hardest thing that I have ever had to deal with. I have had to have two WLE operations, and I now know that I have grade 3 with no nodes involved.
The tumor was not receptive to hormones, and I am still waiting for my HER2 result ( the operation was 3rd July). Is this normal to wait so long to hear the result of this? What result should I hope for, as I believe if it comes back negative I am triple negative, which is not so good? as there are less treatment options? is this correct?
I am to have 6 sessions of FEC and then radiotherapy.
Thanks to all, this site is fantastic, and has helped me a HUGE amount.
xxx
I am also grade 3 with no nodes involved. I had a mastectomy on 10th April and was told I would probably get herceptin after my chemo but every time I ask they tell me the results are not through. I am fed up waiting and when I get my next chemo on tuesday I will be asking questions.
Sorry I can’t be of any help but it would be good to know how long we have to wait.
Good luck with the treatment,
Liz x
I am triple neg its true that there is no follow up treatment but it is no worse than being HER2+ better as long as you dont develop secondaries.The thing is all bc is horrible and all of it is treatable.love Vx
Hi, I too was dx on Friday 13th June. Had mastectomy on 16th July with SNB and DIEP reconstruction. I am grade 3 with two out of four SNB involved. I am seeing oc tomorrow to find out what my treatment plan is. Have already been told I am to have herceptin after chemo and rads. This feels like a nightmare that I can’t wake up from. When are you starting your chemo? I have been reading most of the posts on this site but haven’t joined in much - but now treatment has begun I feel the need to talk to people who are in the same place as me. Hope you find out your HER2 results soon.
Thanks to all of you, good to see I am not alone, if you know what I mean. I have rung my breast care nurse with regards to my results, but still no news. I thought the type of chemo was related to the HER2 results, and this concerns me as they have already decided I am just on FEC.
Floss - My chemo FEC starts on 1st Sept. This is my first post, as I too feel that now that treatment is about to begin it could be the right time to start talking to people going through the same things as myself. Good luck with the onc today.
Just to let you know it took ages to get my HER2 results back, probably had 2 chemos by the time I knew I was negative. Therefore I don’t know much about HER2 status and treatment other than what we all read but I think you have to have chemo before you can have Herceptin. I’m sure one of the lovely ladies on here can give you more advice as the day goes on but at least your chemo is booked and ready to go. I’m currently going through FEC with one more to go and the advice/experiences on here were invaluable so make sure you ask any questions about chemo or HER status as you can and it will help make sure you get answers from your onc. Take care and hope you get some more informed replies than mine!
Hi all
I was dx in May had WLE in june reexcision in july I have grade 3 invasive lymphovascular. I only got my HER2 result TODAY (aug 21) as they had forgot to do the testsin lab after 1st op!!
I am Triple Negative but dont know much about it.
Dont see onc till middle of september as he on holiday so have had no treatment yet and feel like am going mad with all the waiting and uncertainty!
Sorry for being a moan just one of those days
Apparently its not usually this long for results, I just slipped through the net.
Goodluck all
Helen xx
I am also still waiting for my HER2 results too. Glad Im not alone out there. I was diagnosed back on 8th April with IDC grade 3 with no node involvement and had WLE on 7th May. It was hormone receptive though. I am currently just about to have my 4th dose of FEC chemo. I keep asking for my HER2 result but it is not in yet.
Hope you get your results very soon. There is a great thread called ‘top tips for chemo’ on here which is a good start for chemo. Just make sure you drink lots before you go and keep your arm warm - it helps get the veins up. I wear a glove before I go to keep warm.
Saw onc today - having 3 x FEC and then 3 x TAX (i think ) - mind went blank when she was telling me. Asked if I wanted to go on a trial for the second part - she will send me some information to read before I decide - it is something to do with how quick they give you the chemo - every week instead of three week gap! She said they would start giving the herceptin at the same time as the TAX. Too much information for me! Looks like I will start in two weeks time. Good luck for the lst September.
I was also DX on fri 13th June2008 with Grade 3 Medullary Carcinoma and after a WLE & SLNB on 30th June have also been kept waiting for my HER2 results. I am ER- so will not have Tamoxifen. I have had 3 out of 4 Epi and have to have 4 x CMF afterwards, followed by 3 weeks Rads. I have a feeling I will be Triple Negative too. Just want to hear the resuls, but keep being told that there is no hurry as I have to get chemo & rads out of the way first, before they start any Herceptin; if necessary! Nurses on chemo ward voice their frustrations, about the results taking so long, so it must be a country-wide problem!!
I am triple neg too.It is I think ‘poorly understood’ as my GP brother in law said.It means there is no treatment after chemo/rads.It is usually less aggressive than HER2+ but Herceptin puts those for whom it works about level with us.It is statistically more likely than others to recur in 1st 3 years post dx then the risk levels out.Some research suggests that,unlike other breast cancers,if you get to 8years with no recurrence you may be ‘cured’.I take it all as it comes,its all breast cancer,we are all in with a chance.Chemo is supposed to be effective on trip neg.I would push for taxotere.If you type Triple Negative into search there is lots of info.JaneRA is particularly well informed.All the best.Vxx
I find its all very confusing. I was told chemo was very effective just wish I could get started with it< havent got appointment with onc yet as he’s on holiday but am hoping to see him middle of Sept so will ask about taxotere if he doesnt mention it.
Thankyou and best wishes
Helen xx
My chemo started about 7 weeks after my op.I had 4xFEC and 4xTax it was hard but doable.You have waited a very long time I think.Mine was 2cm grade 2 no lymph/vascular involvement.I also had WLE Oct 24th 2006 started chemo early December.
I am really worried about the time I have waited.
I have grade 3 no nodes involved but do have lymphovascular invasion, because I was dx early in May and not started treatment yet I worry its already spreading but i guess we all feel like that and being triple negative feel like its a time bomb!!
I have brought my two sons up on my own for last 9year, my eldest is off to start uni next week and the youngest joins the army a week later, am really proud of them and just hope will still be around to see eldest graduate in 4 year and youngest settled and safe in army.
How are you doing now nearly 2 year after your dx?
Hi Helen I am fine thanks.I have a lot of anxiety and had a scare which was a cyst in the good side.Otherwise I get stronger all the time and apart from a bit of peripheral neuropathy from the taxotere I am well.Remember you have had the op-the cancer has gone so the wait is acceptable though it must seem forever.I really dont think you would be left too long and they do need to make sure your wound has healed properly before they start chemo as chemo will slow healing and it shuts your immune system so you are more liable to infection I hate being triple neg andd I know it is unusual at my age[62 at dx 64 now].At least my kids are settled with children of their own it must be truly dreadful for those whose children are dependent still.Just let me know if I can help.Love valxx
i guess the anxiety is something else we all have to learn to live with. i know what you mean about the age (I am 47) they say its “usually under 40’s” thats triple neg. I am generally a positive person its just taking few days to get head round the trip neg result but know I will get there. good to hear you are doing well and have two year behind you, long may that continue!!
At last I have got my HER2 result, I am positive but when I asked about herceptin the oncologist told me they would be having a meeting to discuss whether or not I would get it. He told me that if I had nodes affected I would definately have been given it but in my case where no nodes were affected herceptin would only be of little benefit to me. The other factor which is taken into account is age and the menopause, I am 47 and pre-menopausal so he reckoned I would be likely to get it. I am now starting to think it may be down to cost, I had assumed that a positive result would automaticaly be treated with herceptin.
It would be good to hear other peoples thoughts on this.
Liz x
I have no node involvement but was told that if I was HER2+ I would get herceptin.I was 62 and post menopausal mind you I was hormone receptor negative that may be why.