HELP what questions do I ask I am HER 2 positive

I am new to this and need some help I am really worried .
I have had operations and finally margin clear and the lymph nodes were clear
I went to see the onc last week and she said that she would start to arrange the radiotherapy . However I have always maintained I wouldn’t have Chemo .
The onc said that they were awaiting the results of the HER2 to come back
I had a call at 8am this morning to say they were positive and now I need to see another specialist to discuss chemo ???
I have about come to terms that I am on Tamoxifen which I started on Nov 5th and the fact I will be having radiotherapy the thought of Chemo is terrifying for me .

What questions should I ask when I go to discuss my HER2 results chemo???
when i go this Friday 16th Nov

Penny

Dear Penny

I’m just posting now to let you know of a few things you might find helpful, here is a link to a booklet for anyone recently diagnosed, it will provide you with information about your diagnosis and treatments you have been offered:

breastcancercare.org.uk/docs/bcu06_web_0.pdf

I am sorry to read that you are feeling so worried, I just wanted to let you know that you are very welcome to contact our confidential helpline on 0808 800 6000, the helpline is run by breast care nurses and people who have had personal experience of breast cancer and so will have an understanding of how you are feeling at the moment. You are also able to discuss what questions you may wish to ask at your appointment on Friday with the helpliners.

The helpline opening times are Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy
Moderator
Breast Cancer Care

Hi Penny,

I want to wish you luck with your appointment on Friday. I suspect that before you knew your HER2 status you might have had a bit more choice in whether to accept chemo or not. In some cases tamoxifen and rads is sufficient. You don’t say anything about details of your tumour but having received the news about it being her2 positive there are harder decisions to make. Of course to not receive chemo and herceptin is a choice and some people choose to go that route. Unfortunately herceptin can only be given alongside chemo or following it. I believe quite large trials have been done and have shown that when you are her2 positive chemo and herceptin give a 52% decrease in disease recurrence compared to chemo alone, particularly in node positive cases. The difficult thing with node negative is one can never be 100% sure the odd stray cell hasn’t escaped to wreak havoc in our bodies.One thing is know for sure. If you are her2 positive the cancer is more aggressive - so if you want to fight the bu**ger take everything they offer. Chemo is not a lot of fun -but as so many on these forums will tell you it is do-able and there will be many of us here to support and encourage you through it.

Dawnhc
xxxx

Penny

I was like you after the shock of the initial diagnosis, my tumour was detected on my first screening so i didnt even discover it myself, I had the op and a node biopsy. I was originally told i would have radio therapy for 6 weeks and then Tamoxifen.
I got my head around this but when i went back after my op i was told i was her2 positive and would need Chemo therapy for 28 weeks followed by radio therapy, herceptin and then tamoxifen. At this point i was just numb and scared as the C word had been mentioned (Chemo). After seeeing the Doc i sat in a little room with one of the breast care nurses and my 2 daughters who are both still in their 20’s. We talked and asked questions, yes it would improve my chances of the cancer not returning considerably, yes i could only have herceptin if i had chemo first, yes my hair would fall out, yes it would be tough but the nurse suddenly said " Look at it this way its a year or so out of you life now to ensure the next 20 or 30 years". I sat and looked at my daughters and thought yes i want to see them get married and see my grandchildren. This may sound a bit dramatic but they dont offer you treatment you dont need. ( Its too expensive for one) . I agree with Dawn take everything thats offered to beat the b****r. I am now having chemo its not much fun but i just grit my teeth and get on with it. One of my daughters has just got engaged so i do have a wedding to look forward to. Although i have told her im not going to any wedding wearing a wig so she had better wait until i have my bl***y hair back.
Good luck on Friday. Ask as many questions as you can. Write them down before hand if you have to and take somone with you when you go as i they will remember the bits you forget.
Only you can make the final decision but think long term. Let us know how you get on

Ann
xx

Hi Penny

I agree 100% with what Dawnhc and Ann have said. My diagnosis happened in exactly the same way as Ann’s but I was given Femara to take instead of Tamoxifen because I am post menopause. The shock of everything happening out of the blue and being on a sort of medical conveyor belt was so immense that I was probably half way through chemo before I could get my head around what was happening. One question I asked the Onc was “If I was your wife/sister/mother, what would you advise me to do?” and he said “Go for it!”. He said that it wouldn’t be as bad as I thought and that he would get me through it. Also, that he had women who had played sports such as golf all the way through it. Of course, I didn;t believe him. But, the first half of my chemo (EC) wasn’t too bad and on the good days, if I had been a sporty person, I could have done it. The second half (Taxotere and Herceptin) was a different story. The fatigue and weakness wasn’t pleasant. But, your chemo dose is tailored to you individually through height, weight etc and you could be one of the lucky ones who doesn’t suffer too much. If/when you decide to go ahead you will get alot of advice from this excellent site. I hope I have helped in some way. Take care.

Love

JibbyX

Hi Penny,

I am one of those who has been sporty all the way through - I am a runner. I did FEC & Tax. It was much harder to run on the Tax, but I never gave up. I truly believe it helped me to stay well and reasonably energetic.

Penny

I had lumpectomy and some lymph nodes removed on 9th October and I am on Tamoxifen. The lymph nodes were clear and I have met the oncologist who is arranging 15 x radiotherapy. I have been for the marking up session. It was during my meeting with him that he mentioned they had not had the HER2 results yet and when I presed him he said I might have Herceptin but you have cheo as well. I was quite shocked as this was not part of the plan. He has said lets not go there until we know what the results are which should be through when I am having radiotherapy. My BC nurse says it taked 3 months for the results to come through. So I dont know whether to book a long awaited holiday at the end of March or not. Apart from all the other effects it will have on my life. Just as I thought I was getting to the end of it. I will have whatever they recommend though!

Regards Madeline

Madelaine

I am a bit suprised at the wait for your HER2 results. I suppose it varies from region to region but i knew within weeks of my op and node removal. It is only positive in 1 in 4 women so you may be okay anyway. I would be inclined to chase your results and query the waiting time though to put your mind at rest. I am normally quite an easy going laid back person but have been frustrated with my Oncologist not answering my questions i have learned to become a bit more assertive and just sit there until i get an answer. Dont be too nice you are the one thats ill and they are doing there job.

Ann
x

Thanks Ann, I have spoken to my nurse today and she is going to do a bit of delving so my know a bit more soon. I meant to say I hope to go on holiday at the end of Febuary for the month of March. I have it all sorted just need to book but I am afraid to. It is Australia so is costing a bit. But hey I deserve it and work is ok about it. So hopefully I may have some answers soon. Thanks againe

Regards

Madeline x

Glad you have chased it up. It doesnt seem fair to make you wait so long. I dont think they realise you have a life to get on with.
I hope it goes well and you get to Australia. You do deserve it. I have an auntie there and my daughter went a couple of years ago while travelling on a gap year and wants to take me to see some of what she saw and i would love to see my Auntie again. As you say it isnt cheap so i reckon it will take me 2 years to save enough to go. Having my cancer has given me the kick up the bum i needed to start saving which i have. I am very lucky to work for a larger company who are keeping me on full pay while im off sick. So hopefully i will be able to go in 2009.
Keep us updated

Ann xx

My breast nurse phoned yesterday to say she had spoken to oncologist and my results were back and I am NOT HER2 positive! I felt so relieved I opened a bottle of champagne. My neighbour happened to call on me just after and I think she now thinks I drink n the day! But who cares, I am so excited, I am going to book my holiday on Monday. I have practically forgotten I start my rads on Tuesday. Anyway Ann keep saving and give yourself something to look forward to. All too often our children seem to do wonderful things and we get left behind, at least that is how I have felt.

Take care

Madeline x

I am HER2+ and was worried when i was told- made the mistake of looking on the internet for hours and scaring my self silly. My oncologist has advised me that as my lump was small grade 2 and my margins and lymph nodes are clear and that as my cancer has been removed my prognosis is 95% that I wont have a recurrence in the next 10 years which is as far ahead as they look. I feel grateful that herceptin is avaiable to us her2+ ladies and with this it puts us on a level pegging with the other types of breast cancer.

Sarah, I am interested to know do you have to have Herceptin and chemo as you are Her2 positive? I never did get to the bottom of what would happen to me as I ended up negative. Anyway glad you have a very good prognosis.

Madeline x

Sarah, I was also grade 2 with margins and lymph nodes clear and Her2+. I just wondered what your treatment plan is and can I ask how old you are (I am 41). Is the 95% with chemo, radio, herceptin and tamoxifen? That is my treatment plan and I am just waiting to start chemo.
That is a very good prognosis.
Lorna X

Lorna
I was diagnosed the same as you except that i was gade 2 bordering on 3 and the prognosis was the same for me too with the same treatment chemo, radio, herceptin and tamoxifen. (I am 50).
My Oncologist told me you can only have Herceptin if you have chemo. If i had refused chemo ( why would i ) then i wouldnt get herceptin.
Sarah
While the internet is a wonderful thing, websites like this are a godsend, sometimes there is such a thing as too much information and im sure many of us have scared ourselves silly in the same way.I dont look anymore. Im sure part of getting through it is a positive attitude and a sense of humour. Although it would be nice if these things came in a pill as we all have bad days when we can loose both of these.

Ann
xxx

Madeline

So glad you got the results back and you are negative. Australia here you come !!!
I wouldnt worry about your neighbour, when ive got through all this i will hopefully be drinking many bottles of champagne.

Ann
xx

Lorna,

I am 39 had grade 2 nodes clear and margins results came back HER2+ started Chemo last Thursday, then onto Rads, then Herceptin not sure from then on.

Lisa x

hi lorna

I was 42 in october. My oncologist said that if i didnt have any treatment there was an 80% chance of no recurrence. with chemo and radiotherapy 90% and with herceptin 95%.i have had 2 FEC 1 to go and then taxotere and herceptin. not sure if these are together or not. next FEC on 26th Nov. my oncologist mentioned something last time about having a break for 6 weeks but im not sure if thats right or not. it would be nice as i would have no chemo over xmas but on the other hand it just delays it. the treatment plan is long enough as it is with having to have herceptin for 12 months. I imagine your prognosis would be about the same as mine, which is great news.

Thanks Sarah,
Looks like we are about the same age then so my prognosis should be about the same. (my tumour was 12mm) That is really positive news for me as I couldn’t really get the statistics out of my oncologist.
He said there had only been testing for HER2+ for a few years so it was difficult to be sure. He said that without the HER2+ my chances were 90.4% with chemo,rads and tamoxifen. He didn’t have exact figures for HER2+ but that herceptin reduced the chances of it coming back by 50%. I suppose that takes me up to 95%!
I will be having 6 x FEC then radiotherapy, then herceptin for a year. I suppose there are so may different ways of doing it.

Hi Lisa,
How did you get on with the chemo? Hope it was OK. I just found out I will hopefully be starting mine next week on Wednesday. What sort of chemo are you having? Is the herceptin is for a year.
It’s good that you have started anyway. My wound has started bleeding so just hope it gets a move on and heals up quick. I was supposed to have my first chemo last wednesday.

Hello Ann,
Your chemo regime must be different again. What have they put you on? Like I said, everyone is different but we will all arrive at the other side in the end.

Hi Penny,
Thanks for starting this thread as it has been interesting. I started a thread in this section called 'Decision time: chemo or not. Much the same thing happened to me. I felt like people kept moving my goal posts.First I was told I probably wouldn’t need chemo. I went from thinking I would have to take a few weeks off work at the most for the operation… to having to face chemo, rads, herceptin, etc.
I know it’s a shock for you. It seems like a lot of treatment. Please let us know what you decided to do.

Love Lorna XXX

Lorna

I am on E-CMF for 28 weeks for the chemo part, radio every day for 6 weeks, then herceptin for a year.Then Tamoxifen for 2 years i think.We didnt really discuss the exact time scales of anything beyond the chemo to be honest as i dont think you can take it in anyway.

I have the Epirubucin in 4 cycles 3 weeks apart. This i am told is the stuff that makes your hair fall out etc and the CMF (Cyclophosphamide, Methotrexate, Fluorouarcil) part which is administered 2 weeks on 2 weeks off is supposed to be a bit easier with less side effects. I hope this is true as i am suffering with the Epi part. This is for 16 weeks. I am due my 4 th cycle of Epi next week then will start the cmf after my normal 3 week break. I will be due my second one on christmas eve (arent i lucky).
I did start me chemo a little late as my wound bled on and off for 12 weeks post op.
Eventually they started the chemo while it was still bleeding slightly but put me on aniti biotics to ensure it didnt become infected.
Like you i thought i would be off work for a couple of months but realistically its going to be about a year. I think my brain may have dried up by then through watching daytime tv !
Ann
xx