Not take any hormone therapy medication…

Hi @Abbydog, could not agree more. Thanks for commenting. 

Hi,
 after speaking with now quite a few women who have been taking these drugs, I have decided not to. this is because 2 out of 5 had cell changes in their uteruses and all of them had no sex life. ( 2 having uterus removed)
I have had invasive lobular carcinoma grade 3 ( due to the length of one of the cell chains.)

I had 2 surgeries, 1 being a mastectomy, the second a redo as they found a cell chain, growing into my body, now 6 weeks of radiation, which was taken too far and there was discussion that I may lost the integrity of the reconstructed breast as I was absolutely BBQéd. Tomorrow is 5 months of this, and apart from the sugeries I have been working.

I have been off the radiation for a week, and I and still having blisters appear and I am on Schedule 8 drugs for the pain...( but work thinks it's a bit of sunburn...) ( still working, and cut down to 4 days a week during treatment as the fatigue was killing me. ( working from home now as I was going to the hospital every day..).

So I have decided no more, I have had enough, and how do they know I even have any hormones left at 62, and I started menopause ant 43? There haven't been any hormone tests and I have a script for something..Letrozol I think...

This is copied from the Cancer Council website Side effects – Aromatase inhibitors can cause thinning and weakening of the bones (osteoporosis). Your bone health will be monitored during treatment and you may be prescribed a drug to protect your bones. Consider seeing a physiotherapist or exercise physiologist for an exercise plan. Other side effects may include joint and muscle pain, vaginal dryness, low mood, hot flushes and weight gain. If you have arthritis, aromatase inhibitors may worsen joint stiffness and pain. Exercise or medicines from your doctor may help.

The thing is these are not side effects, they are effects. There is cause ( the drug) the effects are the symptoms. All of which I already have.. imagine how I will feel... yet I have been told I can use hormone creme is my vagina ??? which by the way is already bleeding through the tissues when I wipe it.

Please bear in mind this is only my opinon, I am not medically trained. But  really think there is a one size fits all approach to the treatment. Which I don't agree with as we are all so different. ( I have auto immune diseases, which have now been linked to some cancer...)

Anyway, thats me...
Hope it assits with a bit of info as well.
Lee

Have you had a good talk to your Oncologist re these drugs?
I think I've heard Tamoxifin has more Uterine issues as you first described.
I don't think Leterazole is the same that way. 
But your quote from Cancer Council is quite correct, and those 'effects' are individual.
I totally understand, it is your choice. Have you spoken to your Oncologist about not trying the Letrazole.
Ask about Hormone tests. I've been told Estrogen doesn't only come from the ovaries, it is also in Fat tissue.
Of course ultimately, you say when.

Sounds like you've had a hard time of it @LeeH :(  - make sure you continue moisturising your rads area - as it will continue to be 'warm' and 'cook' for at least another week or two (even longer, as you had lots of sessions.)  And definitely keep that area away from direct sun for some months.

Your Onc should have given you the '% likelihood' of the cancer returning re the taking of AIs (hormone suppressing meds) - so that you can make a more informed decision re the AIs.  My own percentage was pretty low ..... but I still didn't want to take 'the chance', so have been on them for 5 years, with 2 changes.  Anastrozole finally working well for me, with minimal side effects after 6 months on Letrozole and exemestane, which didn't suit me!  It is about the 'what ifs', I guess.

Interesting that you were told you can take your hormone (?HRT?) cream directly in your vagina ... that's where I was putting mine (as atrophy was my main menopause complaint - I also started in my early 40s) - but the testosterone content had caused changes in my breasts resulting in Breastscreen call backs & I was told to go off it altogether.  15 years later, I was diagnosed with ILC at age 65.

Ultimately, it is YOUR decision whether to continue with treatment ...  take care and all the best xx

Ultimately this is your choice and everyone understands the issues of balancing possible protection from cancer with effects that limit other parts of your life. There is however a simple test which is to try the medication and see how you go. I did ten years on Letrozole. Yes, my bone density suffered (still no
osteoporosis) but how much was due to the medication and how much to
my own ageing is hard to quantify. Happily it was excellent when I started. I had vaginal atrophy and hormonal cream helped a lot (that too was possibly compounded by age). I did not have bone pain, joint pain, flushes, fatigue, low mood or weight gain. I weighed up the costs/benefits year by year and am happy I did. But if I had felt those effects were affecting my life, relationship, work, ability to enjoy myself (travel and have fun!) I could always stop. We are all different and our reactions to medications can be very different too. Best wishes whatever you choose.

Likewise I had stage 1, no spread to lymph node (pre-menopause).
I was expecting to be referred to the medical oncologist for hormone blockers, however after my lumpectomy, the multidisciplinary team decided I didn't need it and didn't refer me. Which was an unexpected relief.