Well said. I couldn't agree more. I stopped taking Letrozole after a year, due to horrendous side effects. I wear splints on both hands now, and I can't grip anything. Endless infections, constant cystitis etc., weak bones/joints.  Just awful. The tablets have ruined my life. I am angry at the oncologists just dishing these tablets out to ppl.  Now, it's a ticking time bomb- constantly dreading my yearly check up, and worrying about the cancer coming back. 

Thanks so much for your reply.  I expect my tissue is now very thin, as I have soreness and can't wee properly.  It truly is awful how we have been treated. I think it's a good idea to write to the Nursing Times. Thank you for repyling to me. I wish you well, too.  Good luck, we need it! 

Thanks for you reply. I shall let you know if I get anywhere with banging the drum for us forgotten, mistreated patients but I think I may as well whistle in the wind.
With regard to your soreness and the the trouble weeing, I spoke to my cousin who is a consultant gynaecologist and what you need is some vaginal oestrogen cream or pessaries. The Aromastase Inhibitors have depleted our oestrogen so badly that this is why we are having all these extra, health problems. Now the trouble is that doctors are dead against giving anything oestrogen based because they believe it will cause a recurrence of the cancer. However what I am talking about is not absorbed like oral medicine. My cousin tells me there is no evidence of recurrence with vaginal oestrogen creams. Why not see your GP and ask? Say that you are willing to sign a disclaimer to say you understand the perceived risks but your discomfort has reached a point where you are willing to take a calculated risk. Alternatively, ask to be referred to a Urologist who specialises in Gentiourinary syndrome of menopause and you can discuss it with him or her. A Gynaecologist would be able to help as well. No disrespect to GP's in general but they are very reluctant to get involved with anything like this, it is too specialised and they are nervous about prescribing. If it gives you any support, I'm doing exactly what I just described and am currently waiting for an appointment. 
Take care. 
Lyudmila.

Thank you so much for this information. I am seeing my GP on Thursday, so I will definitely ask for the cream. I had read about it, but you're never too sure what you read is correct or not, so it's good to know.   Fingers crossed my GP will give me some! 

Hi there,

yes letrazole has its problems for sure. Lack of oestrogen added to my prolapse so just had cystocele and rectocele surgery. Amazing urogynaecologist in London, who is also trained to use the MonaLisa Touch which I will have to save up for.  This helps rejuvenate vaginal tissues, safe for oestrogen positive breast cancer. I heard about it in online cancer forums and from  my gynae physio (I never knew they existed before either!!) a consultant trained in it can only do it. 

There are problems but I took up exercise and I now have a physical job, I have found this really helps with side effects of aromatase inhibitor.  I do find sometimes sleep is a problem so taken up meditation. It is all trial and error, but life is good because it is Life. 

Hi Cagsie, I have heard of this before, I believe it is laser treatment and used quite a bit in Italy. At the moment, I am urging my GP to prescribe Vagifem, which she is reluctant to do. I am seeing a Urologist who specialises in women's health as soon as the appointment arrives, and lucky for me it is someone I used to work alongside, so perhaps he will relent. Oncologists will absolutely not prescrible vaginal oestrogen, even though research shows no breast cancer recurrence. I agree with you about including some exercise, not least because it helps with our mental outlook. I am open to any alternative therapies as well. Have you tried using some lavender oil in the bedroom at night, it's wonderful for sleep. We used to use it in the hospice I once worked in to help the patients relax. Clary sage is sleep inducing as well, you can mix them. Look after yourself.

Hi there,

Thank you and I hope you keep well.  Yes MonaLisa Touch is big in Italy as it is manufactured in Italy. My gynae surgeon trained there.  I want the hospital she works from to get one and it to be offered to cancer ladies.  We shall see.  

Yes I love complementary therapies, I found reflexology, and aromatherapy fab.  You have to hand your body over to your surgeon and oncologist and these helped me to take back my body.  My surgeon is all for it too. 

Yes I love a little drop of lavender.  Personally I don't use Clary Sage, Palmarosa or Rose Geranium as these are more for menopausal symptoms. I read how a hospital in Manchester used some Palmarosa and Rose Geranium as a pessary for vaginal dryness but stopped because it was showing a oestrogenic action.  But at the very low dosages I doubt a risk, but to be safe I choosenot to. I tend to steer towards the Mandarin (very safe), Bergamot, Grapefruit, Lemon, Frakincense (meditative) , Myrrh, Lavender and Petitgrain.  all uplighting and at low dosage. Chamomile and Lavender have a synergy so they are nice too.

I love meditation to be calm, we are never going to feel happy bunnies at check up time, scans etc but if I can make my body calm the mind will not go quite so off the scale!!!!!

X

Cagsie

I failed to make the connection between Italy and Mona Lisa! I heard of this from my cousin, who is a gynaecologist. It may be available on the NHS one day but it will take extensive trials and quite a long time I should imagine, money will be at the root of any decision of course.

I can see you are much more experienced than I am with your oils. I shall try some of the combinations you suggest. The low dose of the Palmarosa and Geranium should be safe, however.  I have some research which says that lower doses of vaginal oestrogen can alieviate vaginal atrophy without influencing serum oestrogen levels. I meant to mention that you could try some Valerian tablets to help you sleep. I think Kalms Night are Valerian based. You seem pretty clued up on your alternative thrapies, so you may know that already. I use the organic sleep infusion by Clipper sometimes, I put a bit of honey in it to take the strange taste off, but it helps a little.  As you said, it's trial and error and all we can do is keep on researching and keeping abreast of any advances in treatment. Thanks for passing on your essential oil knowledge, that's helpful.

Hi there,

thankyou, liking the sound of Valerian, will try that. It's strange isn't it so many of the surgeons and oncologists vary in their advice very confusing for a patient. I gave up alcohol as some research was saying not good for invasive lobular breast cancer and I can't say I miss it, just means I can have a good time and remember everything and everybody else can't I do have some for special occasions though, i'm not that boring!!!! I was saying to my oncologist the problem is with all the treatments is it's " we've saved your life what more do you want"

x