Hi all, really appreciate any advice on this one, have no idea which way to go. Had hormone receptive tumour, small 1.1cm, did surgery, radiation... then medical oncologist said need no more treatment..this is contrary to surgeon, gp and radiation oncologist who all think hormone therapy (Tamoxifen) is necessary.. but won't stand those opinions up to medical oncologist. Went back to med onc, asked to go on hormone therapy, I want to do everything I can to prevent bc coming back. He said side effects can be brutal, only improves chances by 1%, not worth it, if it comes back deal with it then... was horrid in his words, acted like bc was a nothing. He was a complete pratt. Anyways I got script, Tamoxifen, doing pretty good, only side effect really is dizziness...so am blessed compared to most... however dizziness quite bad, had 3 falls now, in last fall fractured cheek bone and multiple cuts and grazes. Went back and asked for some medication for dizziness side effect. Got told... Tamoxifen not worth it, just stop taking it... like wtf... I wasn't complaining, I want to do everything I can to stop this dreaded disease recurring, just needed a hand with the side effects. I'm scared to not take Tamoxifen, feel like I wouldn't be helping myself.. I know its not a guarantee but surely buying yourself a bit more of a chance is better than doing nothing.... drs have got me really confused and acting like I'm bringing side effects on myself. Is anyone else with hormone receptor tumour doing hormone therapy... or have you also been told side effects outweigh doing it. I had thought HT was pretty standard. Can I also throw into the mix I've had 2 melanomas as well as multiple squamous cell carcinoma skin cancers, so clearly cancer cells are quite prevalent in my body in different forms... hence whilst trying to help myself with this bc. Would so appreciate hearing anyone else's story on what their oncologist has got them doing... Many thanks for taking the time to read this... 😊

Oh, thanku so so much... you've all been able to capture my thoughts, but with much better wording, lol, that I can take to my oncologist. This has given me a renewed strength to go back in there and make them recognise these are my choices and not to be dismissive... as you say... if the shoe was on the other foot.... !!! Many thanks to all for giving me back the power 😊

Dear Chevvy,I'm sorry for your experience.A second opinion or change of Oncologist, seems necessary for your peace of mind.Since your Breast Surgeon supported hormone therapy, He could refer you to another one.Perhaps the choice should be yours, after full information.You said you have been dizzy and had a fall.Has your blood pressure been checked?If your blood pressure has lowered, perhaps your body will adjust.You may need to be mindful getting up from bed or a chair, slowly.I'm not on Tamoxifen, I'm on Letrazole(tolerating OK)Good luck sorting this out.

It is quite amazing how cavalier some people can be, in this case your oncologist. As Afrazer says, if the 1% risk was his, he might be a little more concerned...particularly if that 1% pertained to the possible removal of a testicle!!! I was diagnosed triple positive in 2016 and have been on letrozole since the completion of chemo and surgery in 2017. As I'm on a number of drugs for other medical conditions, it can be hard to tell which causes what when it comes to side effects. I have had quite a few problems with not so much dizziness, but vertigo...the feeling that I've just stepped off a merry go round and the earth is still moving around me. Also if my head changes position, such as turning over in bed, putting my head back in the shower or stooping to get something out of a low cupboard. I've been told it is a vestibular disturbance. This is a part of the inner ear and affects our balance. I also had severe anaemia, which has been treated and this helped somewhat. It might be worth asking about that too. By the way, 1% of the pupils in a large city school of 1000 pupils would be 10 children. If a fire broke out and that 1% of children died, the community would not think that this 1% was insignificant. If I were you, I would get another opinion...after all, you could try the AI treatments, and if they all give you very troublesome side effects, you could always stop. However, if your cancer did return, you might well be left with the "what if" question. I wish you luck too in this matter.

Thanku arpie for your encouraging reply. Everyone on here is so helpful. The problem actually is my oncologist. The rest of my team are great. Its the oncologist who is dismissive, hes the only one who thinks no treatment is necessary, and unfortunately he's at the helm of it all... so definitely looking at replacing him. Tamoxifen is a blanket drug... used for post or pre menopause... but as I've since found out this morning if oncologist had bothered to run blood tests and find out my menopause status, he might have been able to prescribe more suited drug specific to hormone levels. (I'm 52, but had hysterectomy at 29 and dont know whether I went thru menopause back then or not, was so busy working, studying, raising 3 kids and running a farm I was lucky if I knew what day it was 🤣.. ).. I feel like I'm back on the right path today tho and have gained so much strength from everyone's words of advice, cause now I'll be making sure they listen to me, my needs and what I want for my body... take care, and thanku again for taking the time to reply.

Whether your onc is any good or not, you've lost confidence in him so no point staying there. Go get yourself someone else. While there is a general policy about names on here, if you put your region in to your profile, others may provide some info or PM you. It does sound strange that the current onc has not recommended any hormone therapy - you don't know whether you'll get side effects or not until you've tried. AIs (Letrozole, etc) can only be taken post-menopause and you don't say if you've had any tests or indeed, have ovaries. Pre-menopause, I think only Tamoxifen is the option.

Drs have conflicting views..

noosa_blue150
Member
5 years ago
I’m puzzled as I thought hormone receptor positive cancer patients were recommended hormone therapy - whether it’s tamoxifen or AI depends on a few factors.

Is there any other oncologist you can go to ? Is my first thought if he’s being so negative .a second opinion could be invaluable
I’d also,be asking what are the alternative meds ( AI)
ive only just started on hormone therapy , my BC was triple positive , and my understanding is I’ll be on it for many years .my oncologist has covered side effects and says one can switch medication types if side effects cause issues .
Others with more understanding hopefully will,post for you too
Chevvy
Member
5 years ago
Thanks for replying... yes am thinking a 2nd opinion may be in order, cause from all we'd been told b4 meeting with oncologist hormone therapy was a given. Now this blokes saying don't... hes really down playing the whole bc thing, not that I need a drama but I would like him to put a higher level of importance on it, I need him to get this right for me. Sounds like you have a very good oncologist who's explained it all and is supportive. I hope the treatment your on doesnt present you with too many side effects and the road ahead gets brighter for you. 😊
Afraser
Member
5 years ago
Your current oncologist is correct that hormone therapy side effects can be difficult to live with, but not for everyone. Like chemo, reactions vary. He might not be so dismissive of 1% if the cancer was his, my surgeon told that every percentage point might matter. A second opinion, I think.
Abbydog
Member
5 years ago
Dear Chevvy,
I'm sorry for your experience.
A second opinion or change of Oncologist, seems necessary for your peace of mind.
Since your Breast Surgeon supported hormone therapy, He could refer you to another one.
Perhaps the choice should be yours, after full information.
You said you have been dizzy and had a fall.
Has your blood pressure been checked?
If your blood pressure has lowered, perhaps your body will adjust.
You may need to be mindful getting up from bed or a chair, slowly.
I'm not on Tamoxifen, I'm on Letrazole(tolerating OK)
Good luck sorting this out.
AllyJay
Member
5 years ago
It is quite amazing how cavalier some people can be, in this case your oncologist. As Afrazer says, if the 1% risk was his, he might be a little more concerned...particularly if that 1% pertained to the possible removal of a testicle!!! I was diagnosed triple positive in 2016 and have been on letrozole since the completion of chemo and surgery in 2017. As I'm on a number of drugs for other medical conditions, it can be hard to tell which causes what when it comes to side effects. I have had quite a few problems with not so much dizziness, but vertigo...the feeling that I've just stepped off a merry go round and the earth is still moving around me. Also if my head changes position, such as turning over in bed, putting my head back in the shower or stooping to get something out of a low cupboard. I've been told it is a vestibular disturbance. This is a part of the inner ear and affects our balance. I also had severe anaemia, which has been treated and this helped somewhat. It might be worth asking about that too. By the way, 1% of the pupils in a large city school of 1000 pupils would be 10 children. If a fire broke out and that 1% of children died, the community would not think that this 1% was insignificant. If I were you, I would get another opinion...after all, you could try the AI treatments, and if they all give you very troublesome side effects, you could always stop. However, if your cancer did return, you might well be left with the "what if" question. I wish you luck too in this matter.
Chevvy
Member
5 years ago
Oh, thanku so so much... you've all been able to capture my thoughts, but with much better wording, lol, that I can take to my oncologist. This has given me a renewed strength to go back in there and make them recognise these are my choices and not to be dismissive... as you say... if the shoe was on the other foot.... !!! Many thanks to all for giving me back the power 😊
arpie
Member
5 years ago
@Chevvy - how old are you? Have you gone thru menopause?

My surgeon told me that I'd go onto Tamoxifen, so I was expecting to - but it was never even mentioned by my Onc.

Back in it's day, Tamoxifen was the ONLY AI med available (back when the only surgery was radical mastectomies - irrelevant of tumour size) & both my brother's Mothers in Law were on it 30+ years ago for 10 years and they are are still here today, aged in their 90s! So I reckon that proves it is an effective med!

These days, I believe Tamoxifen is used more for Pre Menopause women - tho depending on the type & grade of the tumour, some still go onto the other AIs, eg Letrozole etc.

I went straight onto Letrozole - I am 20 years post menopause. Then Exemestane, and have now 'settled' on Arimidex for the last 2.5 years!! So it is NOT unusual to 'have a change' mid stream either.

It is a shame that this Dr (is it a GP) has now undermined your confidence in your medical team - I am guessing it isn't the Onc who prescribed you the meds in the first place? Keep in mind that GPs are NOT Oncs!! They may 'think' they have a broad understanding of EVERYTHING ..... but they do not - specially in the case of cancer treatments.

That's why Oncs are 'specialists' and GPs are 'General Practitioners'!! They have a 'general knowledge' of lots of stuff .....

SO .... Definitely get a second opinion (and put it in writing to your original Onc as well, to get HIS explanation as to why he put you onto Tamoxifen), and make sure you record any meeting on your phone for future reference - write down any questions that you have regarding which AI you are on & WHY ...... Make sure you give THEM a printed copy of the questions (and make notes on your own copy ....) & don't leave til all the questions have been answered.

All the best xxx
Chevvy
Member
5 years ago
Thanku arpie for your encouraging reply. Everyone on here is so helpful. The problem actually is my oncologist. The rest of my team are great. Its the oncologist who is dismissive, hes the only one who thinks no treatment is necessary, and unfortunately he's at the helm of it all... so definitely looking at replacing him. Tamoxifen is a blanket drug... used for post or pre menopause... but as I've since found out this morning if oncologist had bothered to run blood tests and find out my menopause status, he might have been able to prescribe more suited drug specific to hormone levels. (I'm 52, but had hysterectomy at 29 and dont know whether I went thru menopause back then or not, was so busy working, studying, raising 3 kids and running a farm I was lucky if I knew what day it was 🤣.. ).. I feel like I'm back on the right path today tho and have gained so much strength from everyone's words of advice, cause now I'll be making sure they listen to me, my needs and what I want for my body... take care, and thanku again for taking the time to reply.
arpie
Member
5 years ago
Oh dear @Chevvy .... all that surgical history and blood tests should have been used too establish the best meds for your personal case - dependent on the hormone status of your tumours! And the body CAN still make estrogen too, even if you don’t have ovaries ....

Do NOT be afraid of changing Oncs .... a few of us have!

My original Onc was a useless prat, too ... so I swapped to a much better, understanding female Onc who is ‘On my side’. The male ‘ex Onc’ had me thinking I was wasting his time .... saying ‘what are you here for?’ I would have thought that was fucking obvious - if he’d read my notes!

Where abouts do you live? (Town/city/state) Pop it in your ‘profile’ ... people may have suggestions for support etc in your area!

You sound like a super woman already xx. Don’t be afraid to stick up for yourself! Xx
Sister
Member
5 years ago
Whether your onc is any good or not, you've lost confidence in him so no point staying there. Go get yourself someone else. While there is a general policy about names on here, if you put your region in to your profile, others may provide some info or PM you. It does sound strange that the current onc has not recommended any hormone therapy - you don't know whether you'll get side effects or not until you've tried. AIs (Letrozole, etc) can only be taken post-menopause and you don't say if you've had any tests or indeed, have ovaries. Pre-menopause, I think only Tamoxifen is the option.