Am in a real dilemma-please help

Hi to everyone

I would appreciate any help or comments.

I finished my chemo in Feb 07, following mastectomy and recon. Was really poorly with it and have been having bad hot flushes since last November 06. However, these last few weeks the flushes have nearly gone, and I feel almost human again. I was due to start Tamox in March but couldn’t bear to, having heard all about side effects. Went to hospital in June and Onc persuaded me to try Arimidex and Zoladex. Have been on the tablets for just over 2 weeks, and suffering joint pains, but just about managable, but this afternoon, I am starting a period, so I think thats why the flushes have gone.

Will the Zoladex make them come back as before, cause I don’t think I can stand them, now I know how it felt without them, if you know what I mean.

My tumour was small and Grade 1, and no lymph nodes, so I know I have a good prognosis, but now I don’t wether to have the injection or not. Also, in a few years when they finish, I presume I will have the real memopause to look forward to!!

I am now really unsure what to do, just want to feel normal and enjoy life again. Losing my lovely long hair has been bad enough, but now all this rubbish to think about. Sorry for the moan, but have been really strong till now and now I hate how I look and just want to be me again, feel really fed up and down.

I has been the anniversary of losing my dad this week too and that has just made it worse.

Thanks for listening, any advice gratefully received

Love Deborahxxx

Why have you had all this treatment for your low risk cancer? I thought you would have done well with less. My tumour is grade 2, 16mm and no lymph nodes, and i was told a lumpectomy and rads and tamoxifen would be enough!
I think you need to ask about the benefits of zoledex. I’m also worried about tamoxifen but because i’m 40, i’m told there isn’t anything else.
Sorry about you dad, big hug to you.
julieX

Hi Julie

I had the mastectomy because of the position of the tumour meant I would have lost my nipple and I have small breasts and the best result for me was a mast. and recon, which I am pleased with the result. The surgeon did say I could have had the lumpectomy or mast. but agreed I had made the right choice with the mast. as the lumpectomy would have meant a very poor cosmetic result.

They offered me chemo besause of my age and I chose it because I couldn’t bear the thought of a recurrence, however, I didn’t need rads. My tumour is very hormone posotive, and I had originally decided not to have any more treatment, but when I saw the Onc he was very keen for me to have the hormone therapy, he said it would make around 5% difference to the outcome.

It must depend on your hospital, as a friend of mine in Leeds is being treated at another hospital, and she is younger than me, but with a similar situation, and she has not been offered chemo, just surgery and Tamox.

Love Deborah xxx

Hi Deborah,
Like Julie, I don’t understand the need for chemo with a low grade 1 tumour and no node involvement. It is also surprising that you were not advised to have rads. When I had a lumpectomy for a 2 cm invasive tumour, and total axillary node removal, chemo was never suggested, just rads, until the pathology showed I had 4/18 lymph nodes cancerous. I had both. Chemo, without rads, is quite unusual… How big was your tumour? At my hospital, a breast care centre of excellence, they advise chemo for any tumour over 1 cm.
If your Oncologist has suggested Arimidex, which is only prescribed for post-menopausal women, it doesn’t sound right, if he is also advocating Zoladex, which is for pre-menopausal women, to protect their ovaries, in case they wish to get pregnant after all treatments (chemo/rads) are finished. This is a very contradictory situation, which if I were you, I would pursue until I got some definitive answers.

We are not doctors here, just concerned bc patients, who wish to help others in this situation.
Your treatment plan sounds very unusual to me, but I am no expert. Have you had the HER2 test? This is important as my Onc told me that it can only be given when on chemo, or up to 12 months later, and I was past that date when I had the test done privately.

Let’s hope some of the more knowledgeable people on this site other than me, can give you some guidance.
Take care,
Liz.

I find your treatment confusing. If you are having a period you should NOT be on arimidex. That is for post menopausal women.
Maybe you should read more online and go with the facts to your next oncology appt and educate them.

Ruthx

Dear Deborah

You are welcome to contact our team of specialist nurses for advice and information regarding your treatment if you would like to discuss your concerns. Our freephone confidential helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm on 0808 800 6000. Alternatively, you can email the team via our ‘Ask the nurse’ service which you will find on our homepage under the ‘Support for you’ tab.

Kind regards
Emma
Moderator
Breast Cancer Care

Hi Liz and Ruth

Im am even more confused now.

My tumour was just under 2 cm and invasive, so I suppose thats why I was offered the chemo, also they said they offer it to younger women, and of course if they say it will make a difference, you are not going to refuse it are you?

As I had a mastectomy, they said that is why I don’t need the rads.

They thought I was menopausal, so am having the Arimidex, with the Zoladex just in case I am not.

Does any of this make sense?

I am currently still having my period, the first one since just after my chemo started in Oct last year.

Any more info welcomed.

Thanks to you all

Deborah (still confused)

Dear Deborah,

Protocol for younger women tends to be always chemo, because we have a longer life span for recurrances, and for other reasons our prognosis tends to be a bit worse than older women so ‘they throw the kitchen sink at you’ as my surgeon put it, even if you have a low grade cancer as you did, and if you were very worried about the tam. side effects then zoladex shuts down your ovaries so you can take arimidex even if you are pre.men- I have met pre men women on zoladex and arimidex.

Also oncs will quite often push for chemo even if it seems like a small percentage advantage, because they are playing the numbers game of improving overall prognosis.

I would talk to the bcc nurse on the helpline, they are very useful, and go tin with a list of questions next time

best of luck

xxsam

Hi Sam

Thanks, your comments have really made sense to me, now I know that having the treatment was not a waste of time. I have also spoken to the Bcc helpline, and that helped too.

Of course if they offer you treatment, and even if it only makes a small percentage difference, you will take it, well, that was my thinking anyway.

Thanks to everyone who has replied

hi there

I finished treatment Jan 2007, Grade 3 , lumpectomy and 7 nodes biopsy - all clear then went onto tact 2 trials arm 3.
I am on Tamoxifen and have been getting hot flushes, mentioned it to the doc when i went last week for my 3 monthly check up and he said it wasn’t down to the menopause ( which i thought it might have been) im 39 by the way, he said it was doen to the tamoxifen and i also get joint pain in the mornings and the evnings. Doc said he cant give me anything for the hot flushes , they would have prescribed evening primrose but there is now doubts about that now, said will just have to put up with them. I have now started back at the gym 2 weeks ago and go 4 times a week , and you know something i havent had any hot flushes this week…fingers crossed

take care

Simxx

Hi Deborah

I to have just finished treatment gone through lumpectomy,chemo & rads and am on tamoxifen and haven’t had any real side effects other than the hot flushes which are bareable.
Don’t always believe that you are going to get all the side affects they describe as we are all individuals and things affect everyone differently i haven’t had a problem with the tamoxifen as yet been on them about 3 months i no things could change but i’m hoping that all will be well.
I am feeling very positive at the moment and have gone to work for the first time without the wiggy, my hair is very short but i thing what the hell i have to do it sometime.

Wishing all the best and hope you sort out everything
JanW