Maude, I think you have just come up with the first decent explanation I have heard of why prosthetic breasts have nipples… it’s obviously for wearing with a peep hole bra!!
Thank you for resolving that query in my mind.
xxxxxx
Cor you do have to laugh eh!..I’m getting quite an education since dx!
The Mrs potato head look does go and I have to say I’m looking and feeling more human. Can I mention the vitamin E capsules again? and some stuff called pjur both of which seem to relieve the tamoxifen induced dryness/soreness completely…give it a go girls!!! and I mean as a normal treatment such as you would hse skin cream elsewhere…bl##dy marverlous! Makes me personally feel loads better about myself which is having a knock on effect on OH…we are both smiling more…etc
Colly, can you ring your BCN or pop into your GP?
I asked my BCN at the start of Chemo as was never intending to stop (even though at 52 with OH ten years older it seemed assumed that we were well past all that!) and she handed a huge handful of sachets called “YES” lubricant over while trying to keep her eyebrows on they had gone so high!! Some of them are oil based, others water based (prefer the oil ones personally). They are additive/nastie chemical free.
Hope I’m not asking for TMI here, but does EVERYONE suffer with the famous dryness if they’re on Tamoxifen and/or Zoladex? It’s listed as a possible side effect for both drugs, but is it just that those posting here are the ones who are suffering the most and others who are doing fine are keeping quiet? I ask because it might be useful for others reading on here to know that it doesn’t always cause dryness.
I’d like to say a big thanks to the ladies who responded earlier on in the thread to me, great suggestions about the antibiotics and Vit E, but unfortunately have tried all of those and the main problem for me is not dryness, I could cope with that, its the worsening atrophy of the inner and outer vaginal walls and the atrophisation of my bladder and urinary tract which is caused by zero oestrogen.
To explain, if i was out and about and after visiting the toilet,used loo roll that was a bit rough, then skin will be rubbed off my bits and I will bleed, if I walk too far and havent used the steroid cream on my bits then skin will also scrape off due to the friction. last time I went for a smear, the nurse couldnt insert the speculum due to the vaginal walls having closed in.
This is all very rare gals and can only happen if youve taken the radical step of having your ovaries removed and are on Aromatase Inhibitors, Femara being 98% effect at removing any oestrogen produced by other organs in the body.
So really my experience shouldnt have been put on a Tamoxifen/zoladex thread as their effects are completely different, Tamoxifen doesnt remove oestrogen, just stops the body using it to fuel potential cancer cells, zoladex doesnt remove 100% oestrogen as it works on the ovaries, not the other oestrogen producing organs in the body, thats why Tamoxifen isnt as hard on the old bones as AI’s as with Tamoxifen there is still the reserve of oestrogen to be used where its needed in the body.
There, Ive droned on long enough, lol
I knew well before I took the decision of oopherectomy the predicted outcome, but with my dire prognosis felt I didnt really have much choice, so really I shouldnt moan as Im still here almost 3 years later, albeit without the use of my lady bits, lol
made me chuckle hearing your stories, onward and upward girls and may the earth move for you all frequently, haha
StillStanding: could you have a topical cream with a very small ammount of hormone in it? would it be worth asking for a referal?
I am very interested in what you have reported, my ovaries were taken out at hysterectomy two years ago, and I am promised Femara for five to ten years by my Onc… will be very interested to hear if you make progress!
Sorry LiF but Vitamin E may not be a good idea. This is the guidance from NICE “Vitamin E is not recommended for the treatment of menopausal symptoms in women with breast cancer.” This is the page I got it from: nice.org.uk/usingguidance/donotdorecommendations/detail.jsp?action=details&dndid=364
Still looking for advice on what we can use.
Confused and fed up
Peachez,
I think I got such a drastic reaction from oopherectomy because beforehand I had an incredibly high oestrogen level,Even Whilst I was on zoladex, my ovaries were still producing high amounts, thats one of the reasons I went for the op, so when they were removed,my body’s reaction from very high levels of hormone to zero was drastic. Although to be honest, this atrophy thing didnt really kick in for a year and a half after starting Femara and the op.
I’m really confused and uncertain about the topical hormones, when I saw a gynaecologist, he seemed to think that it was ok, whilst my oncologist has said a definite no!
Ive tried to research as musch as I can on this subject, and whilst it seems that in the US,many many women with hormone sensitive BC are being prescribed topical oestrogen, in the UK Doctors are being more cautious, my onc said that these severe menopausal symptoms are only just starting to be addressed because the Aromatase Inhibitors are fairly new drugs and therefore their long term effects and treatments of the side effects are not really known at this present time.
So whilst I really would like to say yes to an oestrogen cream that would end all my problems, a part of me asks myself, why did I go to the trouble of removing all oestrogen from my body, only to add more? because there have been many studies done to evaluate all the different forms of oestrogen, creams, pessaries rings etc and with each method it has been found through blood monitoring that oestrogen is systemically absorbed into the body, albeit in different levels and for different durations of time, what no one knows is for how long and how high a level of oestrogen is needed for cancer cells to re-establish.
For a lot of women its a really high price to pay, quality of life versus survival, I so wish that there was a middle ground and I’m sure in a decade or so when the full effects of these new life saving drugs are realised, some boffin somewhere will come up with the exact amount of hormone we can have safely, then I got to assume its all guesswork.
Im seeing my Onc for my 3 monthly check in May, so will ask again, as he is very interested in anything thats going on in the US and is quite up on anything new, in fact he told me about a vaccine that is going through trials at the moment in the US that will prevent women from getting Urine Infections! I got all excited about that, but he said Alas, it wont be available there for another few years and over here maybe even 10 years, huh!
pm me if you need any more info Peachez
SS
Notsgirl…yes it does but then again it also talks about not using magnetic therapy nor soy products! I enjoy the odd chineese meal, my OH makes fab stirfry…with plenty of soy sauce…do I avoid it? Magnetic therapies are used my many for arthritis…do I avoid these if I get it?
I don’t take it by mouth but only use it topically and reading here ods.od.nih.gov/factsheets/vitamine/ there seem to be few links with vit E and cancer if any!
I for one want a good healthy quality of life, a sex life, a good happy marriage and I don’t want to live in fear of what ‘might’ happen, after all there is no certainty of keeping recurrance away even by following religiously every instruction, do and don’t. After all eating a good healthy diet is part of good living…and sometimes taking responsibility for ones own life has to be done!
So far I and my daughter who has also been affected by this refuse to be frightened get on with our lives and LIVE!
Hi Lostinfrance
My view entirely. OH and I were watching news recently when there was announced that something that previously declared very bad for our health had suddenly become good. OH sighed and said " If we live long enough I reckon that they will declare smoking good for you eventually"
Everything in moderation and sometimes you just have to take a chance.
Happy Days
Chinook
I read your link, LiF and towards the bottom was this ‘Oncologists generally advise against the use of antioxidant supplements during cancer chemotherapy or radiotherapy because they might reduce the effectiveness of these therapies by inhibiting cellular oxidative damage in cancerous cells’.
I am still confused and fed up because there seems to be no consistent clear information on what is and isn’t recommended. I’m not a scientist and I don’t understand a lot of the technical stuff. Can’t somebody publish a clear pamphlet saying if ER+, then avoid using this, this and this?
Ah but then I have finished Chemo n Radio…and we all have a life post treatment! xx
Not posted for a while, but then, have nothing to report!
Sigh.
First tamoxifen today. We’ll see what happens.
OH and I continued with sex during 3rd (good) weeks after FEC and I wonder if this has helped keep things(!) functioning for me. But of course this could all be undone by tamoxifen and RADs.
I have been on Tamoxifen for 8 weeks now and apart from the hot sweats at night increasing and one little ‘niggle’ (explain later in post) I haven’t really noticed any other changes, especially with my ‘lady bits’. I too was worried about the dreaded dryness and soreness I’d read about but to date (and I know it’s still early days)all seems to working very much as normal. I also went for my annual smear yesterday (yes annual, the big C is after me one way or the other!)and the Nurse had no problem with the procedure.
Now then, the ‘niggle’ I mentioned earlier. I have been feeling very light-headed this past two/three weeks and at times it’s like I’m drunk and have a hard time focusing. I was on anti-inflamotory tablets because I aparently damaged my tendon - don’t know how? but maybe I WAS drunk on that occasion! Lol and thought it was them having that effect on me, but not been on them for a week now and today I got out the car at Tesco and had to really concentrate to walk into the store. Is this a side-effect of Tamoxifen? and should I mention it to the Onc next week when I go for my mammogram?
I don’t know! if it’s not one thing it’s another.
JUST GIVE ME MY OLD LIFE BACK!
Karen
Hi Karen
I experienced exactly the same light-headed feeling as you but it was only for the first four weeks that I started taking Tamoxifen. It did go away after that though. I found going for a walk (even just a short one) helped while I was having the symptoms.
Good luck
Maude xx
Hi Ladies,
I picked up the Royal Marsden magazine when I was at the hospital yesterday and there was an article that I think you might be interested in. Unfortunately, I can’t find an e version so I can’t put in a link so I’ve copied some snippets here:
The patient and carers advisory group spooted a gap in the Trust’s services, namely a lack of structure support for patients who are experiencing sexual difficulties following cancer treatment (it hasn’t acknowledged whilst we are recieving treatment but it’s a start!)
As a result, the Trust has employed the hospital’s first psychosexual therapist, who is now offering a sevice for both male and female patients and their partners.
Dr Isabel White says 'At The Royal Marsden, as well as providing physchosexual therapy for patients and their partners, I am also auditing existing services at the Trust and looking at how patients who need help are currently identified and are referred on for treatment. I will use that information to help design a service that links different elements of sexual recovery together and hope to offer physchosexual therapy as part of the overall survivorship and rehabiltation services.
She also hopes that she will be able to help clinicians talk to patients about sexual recovery, recognise people who need further help and identify what next steps would be beneficial for these patients.
It’s still disappointing that the focus is on ‘After Treatment’ and doesn’t include 'whilst undergoing treatment but it’s a start!
Lisa
Thanks for posting that, Lisa. For the benefit of our lesbian posters, is the article aimed only at heterosexuals or is there any reference to lesbian, gay, bisexual and transgender people?
CM- There is no specific reference to lesbian, gay, bisexual or transgender in the article and there’s no reference to heterosexuals either.
Quote ‘service for both male and female patients and their partners’.
I read that as inclusive of all, regardless of sexuality but not sure how lesbian posters feel about that?
Lisa
Hey Lisa anbd CM, this lesbian poster thinks they have gone to a lot of trouble to use non gender specific language so thats a really good start - shows thought has gone into it all. Good for them for putting money into this,
bw Nicola