Hi, I am Karin and I am 43 yrs old. I was diagnosed last April with breast cancer. I have a 9 and 13 yr old. I have completed 16 cycles of chemo and recently completed 6 weeks of radiation. I am meeting with my medical oncologist on 10 January to discuss commencement of tamoxofin for 10 yrs. It has been an incredible journey. I ups and downs, meeting amazing people along the way but the biggest challenge has been being a parent and at times being so weak and unwell. Tricky. I am interested to know what the side effects are with tamoxofin and I am also interested in views about whether to have my ovaries out. I do not want any more children and I have hormone receptor positive breast cancer.

Hi Karin Firstly congrats on finishing chemo!!! Whoo hoo, its a great feeling to be seeing the back of that one. Juggling chemo with parenting is challenging, but on the plus it gives us a focus and a great reason to endure the punishment of chemo. My kids were 2 and 4 when i was going thru chemo, so the terrible two's and terrible TAC near killed me lol!!! I have been on Arimidex for 4 years now and whikst there are side effects it is nothing that is too bad, I did find the first 12 months were the worst. I have not yet had my ovaries removed, but will next year when I come off Arimidex. i have been menopausal since i finished chemo at age 36. Good luck Tanya

Hi Ziggy, Wow 10 yrs of tamoxifin. Ive never heard of it being over such a long perioud of time. Why 10 yrs and not just the standard 5? I cant help u out with any of ur questions sorry.... But sure the other ladies can answer them for u... Merylee

Merylee it is quite common now for younger women with agressive cancer to be kept on Tamoxifen/Arimidex for 10 years rather than 5 Now:(

Hi Karin, I was 40 when first diagnosed with hormone receptor positive EBC in 2008 and was put on Tamoxifen after chemo and radiation. One of the most noticable side effects for me was the weight gain and hot flushes. There are apparently other side effects (joint pain etc) but I didn't have them. They did mention to me the possibility of getting ovaries removed back then after my treatment. I did bring it up after my treatment, but I was told it wasnt necessary as i was in 'medical menopause' due to chemo...(?). In October 2011, age 43, I was diagnosed with secondary BC, still hormone receptor positive, so I will definately be discussing ovary removal after my treatment. I am not sure if my menopause is permanent or temporary, and I dont know whether this affects surgery decisions etc.. I am not taking Tamoxifen anymore and lost weight fairly quickly when I stopped it. I know what you mean by the parenting being so tricky throughout this journey..I have a 13 year old daughter and it is certainly a challenge. C?ongratualtion on getting through all your treatment, its definately worth celebrating such a major feat! Bye for now, Celeste x

Thanks Tanya. My goodness you had to do a real juggling act. Managing the terrible twos and doing chemo. That is hard! I have no doubt you could manage any challenge hereafter that is put in front of you xx

Karin | BCNA Online Network

22 Replies

Leonie_Moore
Member
14 years ago
I was 50 when I was first diagnosed with EBC hormone positive. After surgery, radiation I started Tamoxifen and was on it for 4 years until I got a secondary diagnosis. Same breast side, same hormone positive. My surgeon put me immediately on Arimidex as he felt that the Tamoxifen hadn't done it;s full job on me. Anyway whilst I was on it, I had intrmittent breakthrough bleeding which my gyne always checked out as there is a higher risk of uterine cancer whilst taking Tamoxifen (I hope this does not scare you as everyone is different). I was fine on it - no aches, some night sweats (but had them already) not much weight gain. Now on Arimidex (I dispise it- lots of joint pain and huge weight gain). We are all different and the side effects are all differing. Unfortunately or fortunately you really have to try it to know. Some people have had terrible side effects BUT there is always a choice of some other drug that they were changed to. Tamoxifen didn't make me go through menopause - even at age 54!!! Congratulations of completing chemo and radiation. XLeonie
Keryn
Member
14 years ago
Hi again, I am now 12 months post any treatment so may be different for you. I found that my hot flushes slacked off at the end of treatment and I was able to return to "normal" sleeping patterns except I am always hotter than I was before all the treatment. I had to have an abdomonal hysta so my recovery was long. As with a ceserian birth you cant do much at all for 4 - 6 weeks, and they are right. It took me 4 and a half weeks to not have pain every time I stood up.

I am now 12 weeks since surgery and have no pain, no hot flushes and looking forward wthout the dread of my overies. I do have hormone replacement therapy, a very light dose as I have a dry vagina, but all in all I would rather risk the HRT than have no sex ever again, which is what one doctor suggested! At 48 Im not ready to give that up altogether! No way!

Heres to a good many years without the dread of what if???

Keryn
Ziggy101
Member
14 years ago
Hi Celeste, thanks for your message. 13 yr old girls are wonderful , however, you need to choose the battles, what to ignore and manage their hormonal changes. All the while whilst I am dealing with my hormonal ups and downs. I am sorry tl hear that you were diagnosed with secondary bc. What treatment will you require? Gosh -weight gain. That just sucks. I can not shift 8 kilos already. It has been a funny journey with the weight issues. I have had a number of people in my local community question my weight. In the nicest posskb,e way they wondered shy I had mot lost weight give a cancer diagnosis. I have been very quick to let them know that this is one of the wonderful joys of bc. You can put weight on. Damn it !! Anyway, good luck with your upcoming treatment xx
Ziggy101
Member
14 years ago
Hi keryn, thanks for your reply. I will certain look further if medical oncologist does not agree with ovaries being removed. What was your recovery like? Are you still experiencing the hot flushes? I find my step is constantly interupted with me waking and feeling on fire. I have doona on/doona off and play this game hour on the hour through the night. Xxx
Ziggy101
Member
14 years ago
Hi merylee, when j lags saw my medical oncologist he bad just come back from a conference in america. He stated that the results were even more profound if you remain on tamoxifen for 10 yrs. I will see more information when I see him next week. Thanks fir responding xx
Ziggy101
Member
14 years ago
Thanks Tanya. My goodness you had to do a real juggling act. Managing the terrible twos and doing chemo. That is hard! I have no doubt you could manage any challenge hereafter that is put in front of you xx
Anonymous
Not applicable
14 years ago
Hi Karin, I was 40 when first diagnosed with hormone receptor positive EBC in 2008 and was put on Tamoxifen after chemo and radiation. One of the most noticable side effects for me was the weight gain and hot flushes. There are apparently other side effects (joint pain etc) but I didn't have them. They did mention to me the possibility of getting ovaries removed back then after my treatment. I did bring it up after my treatment, but I was told it wasnt necessary as i was in 'medical menopause' due to chemo...(?).

In October 2011, age 43, I was diagnosed with secondary BC, still hormone receptor positive, so I will definately be discussing ovary removal after my treatment. I am not sure if my menopause is permanent or temporary, and I dont know whether this affects surgery decisions etc.. I am not taking Tamoxifen anymore and lost weight fairly quickly when I stopped it.

I know what you mean by the parenting being so tricky throughout this journey..I have a 13 year old daughter and it is certainly a challenge.

C?ongratualtion on getting through all your treatment, its definately worth celebrating such a major feat!

Bye for now, Celeste x
Tanya
Member
14 years ago
Merylee

it is quite common now for younger women with agressive cancer to be kept on Tamoxifen/Arimidex for 10 years rather than 5 Now:(
sillysam83
Member
14 years ago
Hi Ziggy,

Wow 10 yrs of tamoxifin. Ive never heard of it being over such a long perioud of time. Why 10 yrs and not just the standard 5?

I cant help u out with any of ur questions sorry....

But sure the other ladies can answer them for u...

Merylee
Tanya
Member
14 years ago
Hi Karin

Firstly congrats on finishing chemo!!! Whoo hoo, its a great feeling to be seeing the back of that one. Juggling chemo with parenting is challenging, but on the plus it gives us a focus and a great reason to endure the punishment of chemo. My kids were 2 and 4 when i was going thru chemo, so the terrible two's and terrible TAC near killed me lol!!!

I have been on Arimidex for 4 years now and whikst there are side effects it is nothing that is too bad, I did find the first 12 months were the worst.

I have not yet had my ovaries removed, but will next year when I come off Arimidex. i have been menopausal since i finished chemo at age 36.

Good luck

Tanya

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Karin

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