advice please

[balogabear]

Hi I discovered that I had a tumour back in September this year, the first visit to my doctor (female) she just dismissed my concerns saying it was just related to my menstrual cycle (no examination or eye contact wow how clever was she :( ) after persisting and seeing a nurse who did take me seriously I was sent of to the hospital and to cut a long story short eventually got the diagnosis of BC.
I had a lumpectomy and waited for test results. there was no lymph involvement, the tumour was 2cm and they got a clear 2mm area around during surgery, but it tested positive to HER2.
I had my first cycle of FEC 75 a week ago tomorrow and even now feel sick to the stomach about having to go back, I am finding the diagnosis really hard still and was wondering if anyone had refused chemo in a similar situation? I wanted to say no but am terrified of it coming back yet terrified of the side effects ect of the chemo.
also how and what happens during radiotherapy? and herceptin as I have these after chemo.

has anyone used the cold cap with FEC75?

thank you in advance for any advise it will be appreciated

[jra40]

Glad you are here, this is the best place to be to help you through your journey.

It is a very tough decision to waive chemo but that has to be a personal choice. When I was diagnosed last year, the word "chemo" sent chills through my body. Looking back now, I am glad I went through with the process. My tumor shrank to nothing with no node involvment and it gives me some comfort in the reduction in the recurrance percentage rate. I was able to work and enjoy a realitively normal life (whatever that is) through the chemo process.

I am currently in radiation until mid-November, I have 20 rads completed so far. I go everyday and it has been a piece of cake! I love my treatment team and they make it a pleasant experience. I do not feel a thing and have had no side effects. I am on Herceptin too, every three weeks along with Tamoxifen for 5 years. Herceptin does not give me many side effects, only slight joint aches. I feel extremely well and am now back to running 3 miles, 4 days a week.

Chemo is a tough process but it is what we have to do to combat cancer. It's a temporary bump in the road, and it seems like a distant memory to me now. If you do go through with it, you will be surprised at the inner strength you have and the love & support that will surround you.

God bless,

Jessica

[NEDenise]

Balogabear,
I'm sorry you have to deal with any of this...but I'm glad you came here. There's so much support and wisdom here.

I was diagnosed at stage III, so chemo was never "optional" for me. I had to pull out the biggest guns possible. But I have to say...with all the great pre-meds and anti-emitics...it wasn't bad. Not nearly what I thought it would be.
Except for bone pain with Taxol, my only side effect was extreme fatigue. Many women on the forum say they worked through chemo...I did not. I couldn't.

The best advice I have gotten from our HER2 sisters here is:
1. Make the best choice you can with the info you have.
2. Once you decide, don't look back.

To that I would add...make sure you have all the best info available. Get second, or even third opinions if you need them. My goal is never to feel that "if only I had known" kind of regret, because I didn't know what my options were.

I wish you all the best!
Denise

[tricia keegan]

I think I felt the same during my chemo and all that kept me going was the fear of the cancer was bigger than the fear of chemo!
Herceptin for me was a breeze and I had few if any side effects to speak of so really it did'nt bother me to go every three weeks for the year and it went by quickly.
I was also fortunate with rads and did'nt burn at all and just went slightly pink and itchy, the tx takes only minutes so looking back, once I finished the chemo the rest was very do able!
Good luck with your decision, there was a lady on another support site diagnosed with me and she chose Vit C infusions rather than chemo although she was'nt her2+, she has since sadly recurred to stage iv but is having a good response to Faslodex. In your case perhaps herceptin alone with rads may suffice, why not discuss with your onc again for his opinion??

[fullofbeans]

her2 is vicious i had no lymph involvement initially. also i can see you are in the uk just by the type of treatement you are receiving and the delay at dx..

a taxane is usually often for chemo which also allow to get herceptin at the same time.

you did not get CT scanned did you?

Chemo is bad and yes side effect are horrendous but if it does give you an extra 10% chance to not spread well .. most people recover fine from a chemo first line look kelly Minogue.. more difficult after..

[CoolBreeze]

I disagree that side effects are horrendous. I'm very sorry if it was for you, fullofbeans, but I've been on chemo for almost two years, three different ones, plus herceptin, and I have not had any terrible side effects.

I followed some simple rules: drank a TON of water before, during and the day after chemo - I ate high fiber and took my meds religiously whether I thought I needed them or not. I never had any nausea or vomiting or even constipation. I did lose my hair with my first round but that was to be expected. With the Navelbine that I've been on, the only side effects are to my blood, which all chemos do.

So, don't be afraid, it certainly isn't true that everybody gets side effects and in fact, with the pre-meds they have these days, most people don't. If you are having negative side effects - if you did last time - dry drinking a LOT of water to help flush your system. Being hydrated before, during and after can really help. Also, if they give you meds, take them on time even if they say "as needed." I took my antinausea meds even though I never was nauseated, just in case.

As for the cold caps, it's my understanding that you have to use them from first use. If you have already had one session than I'm not sure they'll work. Won't hurt to try if you can stand them though.

You might ask for ativan if you are really nervous, or talk to your chemo nurses about whatever side effects you are having. They often have things to help.

Giving up chemo is a personal choice. The only person I know who did is no longer with us. Her2 is nasty, nasty stuff and chemo doesn't last too long in the grand scheme of things.

For most people, anyway. :)

[balogabear]

Thanx all for sharing your experiences it really is helpful. CB I have had the first round of FEC75 and although I did feel weird no sickness just really tired. I did however not feel hungry and had to make sure I ate at regular intervals.
The only reason I did consider saying no to chemo was that apart from the HER2+ everything else was negative. The cold cap wasn't that bad and having read stories on the net about the pain for the first 15 min I am concerned that it wasn't working properly.
I am in the UK, and once passed the very useless GP the hospital staff involved in my care have been great.
I am going to have FEC75 at 3wkly intervals followed by Herceptin and radiotherapy,
Thankyou all so much for your advice because I will defo be drinking lots of water now :)

[CoolBreeze]

I'm glad you are doing okay. Everything was negative for me too, and the cancer still invaded my liver. Which is why I say HER2 is nasty. Do everything you can to help yourself.

For the record, I had a breast so full of cancer my pathology report was four pages long. The doctor couldn't believe it - he waved the papers at me saying, "Have you seen this?" He was shocked it wasn't in my nodes but it had clearly already escaped because there was so much. So, don't let my story scare you, you have much smaller amounts than me. But, you still have to treat it.

[tricia keegan]

I think the her2+ is a good enough reason to continue chemo too and glad you made that decision. I'm in Ireland so not too far from you and have had wonderful care from day 1 and really cant praise my medical team highly enough either!