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Author Topic: ''Hormonal'' breast cancer and Tamoxifen  (Read 707 times)

ON555

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''Hormonal'' breast cancer and Tamoxifen
« on: August 18, 2019, 01:48:31 PM »

Hello there- unfortunately I've had a summer of it- noticing my breast was looking a slightly odd shape at the beginning of July, through mammograms, biopsies, and this week, unfortunately a mastectomy.
I am awaiting the results from the cells that were removed, but at the very least will be having radiation followed by Tamoxifen.  It is the Tamoxifen bit that bothers me- with the apparent link between that and endometrial cancer.
I started HRT in the second part of 2018 for peri-menopausal symptoms that have been going on for about 4 years- oestrogel and progesterone tablets.  What I am querying in my own head, is whether Tamoxifen would be necessary now that I am no longer on HRT?  No idea if anyone has had this experience, but this forum always seems like a good place to start!
Thanks!
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CLKD

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #1 on: August 18, 2019, 04:07:11 PM »

Hi! sorry to hear your news but if the cancer has been removed then Tamoxifen is recommended - I think to stop any rogues cells taking hold?  When surgery happens apparently some cells can float off into the wide blue yonder ......... I had lymph glands removed and there was no sign of spread.

I have to say that the drug didn't suit me.  It heightened my sense of smell.  DH had cooked a Dundee cake which was in a tin with the lid on in the pantry with a closed door.  When I walked by the pantry I could smell every ingredient even down to the 2 tablespoons of cold water that he had added.  So all food stuffs were awful especially anything fried or grilled  >:(  ::)

My Consultant told me that none of his ladies had suffered with womb cancer whilst on the drug but a friend: 3 years ahead of me in the treatment: eventually died from it.  She took Tamoxifen for years then stopped; because another lump in the breast had occurred  :-\ and then developed problems in the womb.

I hadn't felt physically ill throughout my diagnosis and treatment, including precautionary radiation. It left me with a portion of great that looked as though it had been left in the sun  ;D and a steroid cream was given.  I was also told to keep out of the sun and to wear a hat!  It was a very hot Summer and the radiation dept was the coolest place to be  ::). I took a tape with me as I had to lay completely still ...... I bored everyone with Whippersnapper as the music was fed into the waiting room  ;D. I opted for the tattoos so that the beams would be on the same place each treatment session: the blue dye meant that I couldn't bath for 8 weeks  :o :o

 So I decided that as the drug was prescribed as it 'might' stop cancer cells growing, I stopped it.  That was in 1995.

I believe that there are other drugs that suppress oestrogen?  Maybe have a chat with a Pharmacist or an Oncologist to find out.  36 hours after taking my first tablet I felt as though I had the 'flu  :o

Let us know how you get on.  Do you feel supported by your Consultant and Team?   :foryou:
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Changes can be scarey, even when we want them!

ON555

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #2 on: August 21, 2019, 08:13:19 AM »

Thanks very much for your reply-I take it great means Breast?  ;D I am awaiting final analysis results on Friday- hoping to avoid the dreaded chemo but at the very least it will be 30 sessions of radiation followed by Tamoxifen. So I take it then that you stopped the Tamoxifen after a short time?
My feeling that it is one thing having cancer, but there also has to be a quality of life that goes with having treatment. From all I have read, Tamoxifen is most unpleastant!
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CLKD

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #3 on: August 21, 2019, 09:53:23 AM »

Yep!  shows you read all the way through  ;D

Morning.  Take a list of questions to ask.  My Consultant insisted on them every morning  :D

I tried 'tamoxifen' for 4 months but couldn't tolerate it.  I decided that as it was given as a precaution, why suffer?  No problems since.  I had 6 monthly checkups for 2 years with an annual mammography even though my lump never showed on film  ::) and then every year for 5.  Then both Consultants retired, I'm sure it wasn't anything that I said  ;D

Good Luck!  What will chemo do that Tamoxifen can't? 
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Changes can be scarey, even when we want them!

Wrensong

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #4 on: August 21, 2019, 10:22:57 AM »

Hello ON555  :welcomemm:.  I'm in a rush this morning so can't reply at length as I'd like, but just want to say I'm so sorry you've been having a very difficult time of it recently, but it's good to know that you have the big hurdle of major surgery behind you.  Please do all you can to be rested & relaxed, let others help you, do follow the advice about not lifting & at the appropriate time start your post-surgery exercises gently as advised, to help rehabilitation.  Do ring your BCNs with any queries - they are a fantastic support & fount of knowledge.

The Tamoxifen will help to deal with the oestrogen your body goes on producing naturally (some is even produced post-menopause) so regardless that you are no longer on HRT, if it has been recommended for your type of tumour I would follow your oncologist's advice and see how you are on it.  Your breast care team are best placed to advise on what is appropriate in your case.  They know the issues inside out.  Sorry - no time for more now.
Wx
« Last Edit: August 22, 2019, 06:36:32 AM by Wrensong »
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allybally

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #5 on: August 21, 2019, 01:03:34 PM »

I have been taking Tamoxifen for around 8 months now after surgery and radio for breast cancer which was oestrogen positive.
I too felt very conflicted after reading about side effects, and had to stop my HRT patches and have the mirena coil removed.
I was told that while my cancer had not been caused by the HRT, it had fed it..
I can't even take any herbal remedies as even phyto oestrogens are not recommended.
I am happy to report that I have had no adverse reactions in fact I am sleeping better than ever, I have put on maybe a couple of pounds around my middle but nothing drastic, my brain fog is much improved, I do still get hot flushes, night sweats but they are bearable and no worse than when I was taking HRT.
At the moment I feel that any menopausal symptoms/ drug reactions are much preferable to cancer coming back...I trust my oncologist.
Look after yourself, eat well, do what makes you feel happy, your body has been through a huge trauma..wishing you health & happiness x
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CLKD

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #6 on: August 21, 2019, 01:12:42 PM »

 :thankyou:  I often wonder about phyto-oestrogens in food. 

Let us know how you get on.  I believe that there are alternatives to 'tamoxifen'?
« Last Edit: August 21, 2019, 09:07:13 PM by CLKD »
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Wrensong

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #7 on: August 21, 2019, 08:26:13 PM »

Allybally - hi, what a lovely, positive & encouraging post.  It's good to hear from ladies in this situation.  Thank you for posting your history.  I wish you all you wish yourself for the future & hope that while you still have meno symptoms they will continue to be bearable without HRT & that better still, they will soon stop altogether.
Wx  :thankyou:
« Last Edit: August 22, 2019, 06:32:48 AM by Wrensong »
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Wrensong

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #8 on: August 22, 2019, 06:44:56 AM »

CLKD, I was recently at a joint Macmillan-NHS presentation where the topic of diet after BC was raised & it was recommended to avoid, as much as possible, phyto-oestrogens such as soya products & for the same reason, CBD oil.
« Last Edit: August 22, 2019, 07:48:36 AM by Wrensong »
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CLKD

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #9 on: August 22, 2019, 06:54:56 AM »

 :thankyou:

so what food stuffs have them in  :-\
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racjen

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Re: ''Hormonal'' breast cancer and Tamoxifen
« Reply #10 on: August 22, 2019, 07:10:02 AM »

Yep!  shows you read all the way through  ;D

Morning.  Take a list of questions to ask.  My Consultant insisted on them every morning  :D

I tried 'tamoxifen' for 4 months but couldn't tolerate it.  I decided that as it was given as a precaution, why suffer?  No problems since.  I had 6 monthly checkups for 2 years with an annual mammography even though my lump never showed on film  ::) and then every year for 5.  Then both Consultants retired, I'm sure it wasn't anything that I said  ;D

Good Luck!  What will chemo do that Tamoxifen can't?

Tamoxifen plays a totally different role in the whole picture - it removes oestrogen from the system in order to prevent a recurrence. Chemo attacks the cancer you already have - you can't really compare the two
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ON555 I'm so sorry about your diagnosis - I too have had BC but mine was triple negative (not hormonally driven) so drugs like tamoxifen aren't any use to me. TNBC is more aggressive and faster growing than the hormonal type, so I had an immediate mastectomy followed by chemo and then radiation because there's no safety net for me like tamoxifen.

When you  get more info they may be able to do a test which indicates whether chemo would be appropriate for you. In the end it depends on what extra % likelihood of surviving 10 yrs it gives you - if it's only 2 or 3% it's probably not worth it, but for me it was 17% so I had no problem making the decision (even though I had no lymph node spread). Hang on in there - this bit while you're waiting for the full details is agonising. But you'll get thru it - I'm 3 1/2 years post treatment and I'm doing fine. Good luck xxx
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