Now I am TOTALLY CONFUSED!

i finished 5yrs of tamoxifen 2 months ago and onc said 'right its letrazole now for 2-5yrs.
I have found i have loads of joint pain and the calcium I was taking is playing havoc with my IBS, also feel I have put on more weight.
I had an onc appt today and told her I didnt like letrazole.
Was taken aback when she said ‘don’t take it them, come off it’

I had read some research about its advantages and thought they were 40% to stop a re-ocurrence but onc said its not that cut and dry and more to do with my starting place of my cancer and grade and pos re-ocurrence anyway. To be honest I didn’t understand completely what she was explaining to me.

She has left it to me to decide what to do.
I know physically it would be great to not take any drugs, I may lose weight and am determined to go on a fitness plan, but psychologically I am a wreck already, thinking am I doing the right thing, and all the hundred and one ‘what if’s set in’
Any words of wisdom would be welcome. I feel its a huge decision and I have been left in limbo.

R

hi,

i dont know how good you are at interpreting research figures, or wether you are good at distinguishing a good peer reveiwed study from other types.

I know that sometimes when journalists and web sites report results, they do not quote the statistics correctly. So the research you read might not be quite right. It is often the case that one study can get one set of results and then another can come out with the complete opposite.

I am lucky that my son is a medical statastician working in cancer research and can realy look into things for me, and he says—Mum, dont read anything in the papers or on the internet.

He did explain the percentage game to me when interpreting the figures on the comsumption of alcohol. Some people were telling me that I was increasing my risk of reocurrence by 30% by continuing to drink. He looked into it, taking my cancer, my low weight etc into account and the results showed that for my type of cancer I had a tiny risk of re-ocurrence–lets say it was almost nothing. Then a 30% increase of almost nothing is still almost nothing. The same report showed that the women in the report that did not drink had a much higher risk of dying of heart disease than those that did–so he said to carry on drinking.

I would listen to your oncologist. She has applied the statistics to your specific case. Sounds to me that figures suggested to her that might have been a small reduction in risk with the drug, but that it was so small and uncertain that it did not justify the side effects. Or perhaps it is the hospital paractice to try everyone on letrazole regadless unleass there are side effects.

My familiy are succeptable to osteoporosis It is a terrible thing, I do not want to end up like my mum with a crumbled back and lots of fractures. The calcium suppliments only reduce it somewhat, so perhaps she took that into account too.

Also remember that weight is a risk factor in re-occurance, so perhaps she took that into account. She has to think about the health of your whole body.

i am not a medic, but if my oncologist said it was ok now to go drug free i would say whopee and get on with getting realy fit and well again.

ps, I am about to go on tomaxifan, how did you get on with that, realy interested to here everyones experiance

Hi Liverbird

Can’t offer you any advice on this one but sounds like you might benefit from ringing the helpline and talking through with them. They have so much knowledge on these sorts of things and can talk it all through with you.

I hate it when I’m given decisions to make about my health, it leaves me in a complete state of uncertainty. It sounds like you need more information explained in a clearer way to help you make that decision.

take care, Elinda x

Hi Liverbird … I dont like the sound of your onc :frowning: things are worrying enough with out them making things more confussing, I can totally understand you feeling like this you could try calling your breast nurse see if she can help you more with what your onc was saying Tell her how confussed you are & how you are feeling about the whole situation.

hugs
Mekala

Hi Liverbird,

I have been on Tamoxifen for 7 months. I was experiencing some quite significant side effects and seriously was considering stopping the drug. In discussion with my oncologist she agreed that I had to weigh up risk against quality of life for the next 5 years. I will keep going for another few months with the drug, in the hope that things might settle down, but if they don’t then I will reconsider.

Tina
x

Hi O and L
My experience of Tamoxifen
I am 51 and very much pre menopausal. I have also been on Tamoxifen for 7 months and so far have had no problems really. I have still had a few periods ( lack of periods was the one SE I was looking forward to) they are just as heavy as ever but don’t last quite so long. It has however stopped any premenstrual symptoms and my hormone related migraines… which is all good!
I have managed to continue to lose weight while on it. I have not had any hot flushes or night sweats.
Of course… because I have no SEs I convince myself it’s not working but my onco told me that is not how it works
Apologies to those that are having a tough time on it
Hope you are as lucky as me x

Hi Liverbird

I was on Tamoxifen for 5 years and after tests to see if I was post menopausal, changed to Letrazole a year ago. My onc went through the pros and cons and suggested 3 years on it. He used a program that gives a projected outcome given the factors of your particular cancer (size, spread, er+ etc). I thought that a 3% better chance was worth taking as I was used to being on medication.

A year down the line I’m not so sure now. You can never know how an individual is going to react to medication and I have found I’ve recently had problems with my digestive system - indigestion, constipation, trapped wind pain etc. The side effects listed cover almost everything to do with digestion. This combined with the build up of calcium in my body, I think is the cause.

I was also reading about prolonged use of indigestion tablets (contain calcium carbonate). Apparently ‘over time they (Tums, Rennies) cause acid rebound, a condition in which the excess calcium actually stimulates increased acid secretion’. As the dose we take is quite high it’s hardly surprising we’ve had problems.

I get joint pain and stiffnes but feel this is managable. I’ve also put a bit more weight on but my body shape has changed too so this may just be the menopause (I’m nearly 54).

I’m due to see my GP next week and will see what he suggests. May have to see the onc again soon too.

Perhaps you could ask your onc’s secretary to get her to explain again your projected prognosis maybe using the same program mine did - I think it’s on the web but for consultants only.

It’s so hard when you have to make decisions youself. My onc would have given me chemo if I’d wanted but I decided just to go the homone therapy route (5 yrs tamox, 2 yrs zoladex). I’m lucky that my husband is very supportive and the breast consultant who did the ops is also happy to advise, so I’ve had a lot of help making my decisions. The decisions I’ve made have been the right ones for me at those moments in my life, but that still doesn’t stop those little doubts every time I get a pain or niggle.

Having had cancer is something that never completely goes away, but the further away from diagnosis I get, the easier it is to cope with.

Good luck R with your decision and I hope there are many more replies from the wonderful women on this site.

fantan

i am totally going to get my list of questions for the onc next week, first i would like to see my pathology report.

Second i would like her to clarify the comment, well we your cancer was so near the skin and the back wall to cut out the normal margin, but dont worry whenever we took the skin and back wall in the past we never found any cancer in them—what???

and finally want to know what they are basing the treatment on. Has she fed it into a program??? if so which one? One of the program is based on results in america several years ago on an age range of women younger than me.

I think i will probably be easily persuaded that rads are necessary, but although I am willing to try tamoxifan i would want to know how much better my chances are on it when putting up with the side effects.

Hi Im not sure how id feel about any of the hormone or tageted therapies although being TN ive nothing like that which can be offered to help reduce a reccurance which is a bit of a bummer.

Hi OAL good for you your doing the best thing yes seems to be alot of unanswered questions … I can’t believe she said that about the skin & back wall how can they go on what others have had done everyone is different & sounds likes she is just taking a wild guess from what you are saying. You know you are entitled to a second opinion.

They usually do all the stats on the online one (forgot whatt its called) just gives you a % of how much you would benefit from chemo 4% & under most onc concider not a big enough benefit for chemo I dont know how they work it for rads ?

Im so pleased I feel totally at ease with my onc answered all questions simply & no dithering got good vibes from him & he made me feel my health was as important to him as well as me, didn’t make me feel like just another number & one of these that says let me do the worrying not you, worth his weight in gold & very thankful im under him.

whom do you ask for your pathology report please? my onc very unapproachable and her receptionist the same. my radiotherapy team are fab. do you think i could receive via them? alex xxx

Hi Alex you need to ask your onc you are entitled to have a copy of any medical report by law so they can’t refuse

thanks hun. got an app. with the cow end of month. think i will chicken out and get rads team to do it cos they are nice! thanks alex xx

i am going to ask onc next week, and if she cannot arrange it ask the breast nurse. If it has not arrived within a week I will start thinking about NICE. it is no good getting your report after you have made treatment decisions

Hi Alex I feel for you that you feel they are so unaproachable Yes you could try the Rads team it was my rads nurse that photo copied mine for me but I asked my onc to which he said sure of course you can. Tell your Rads team you feel uncomfy asking your onc.

oal I asked my BCN first & she was the one that told me it wasn’t down to her but the onc & I needed to ask him ‘IF’ he she does recline then I would think about NICE but they are not allowed to recline but as Alex said some onc do make some feel uncomfortable & unaproachable although alot are FINE about it

Hugs
Mekala x

thanks mekala, i have a complimentary aromatherapy/reflexology app fri that im quite looking forward to! never thought i would want to go hosp after the last few months. but onwards and upwards. thanks 4 your reply and happy last rads 4 u monday.(hope i got that right?) i finished 2 weeks ago. bit scarey when all active treatment over. will call hosp monday so hopefully report will be there 4 me fri love and hugs alex xxx

your welcome Alex yeah ive been feeling bit ? not sure what the feeling is lol with it ending Monday, hoping I can just try to move forward without too much of the BC dooming my thoughts
love & hugs to you too xxx

Oh that will be nice we got a place near the hospital that offer these free to cancer patients I think im going to get some booked up too :slight_smile:

I was on Tamoxifen for 5 years now on Femara, thought originally for 3 years, since been told by Onc that 5 years is the suggested period(not so sure about that) Since read somewhere(can’t remember where ) that trials are being done to see if 10 years is an option. Well it won’t be 10 years for me because I do not like Femara.

I was fine on Tamoxifen, just weight gain, no other problems but after 6 months of Femara I started getting real problems with my mouth, dry, ulcers, oral thrush, burning etc. There is one ulcer that I have had now for several weeks and I have also lost weight.

I have been on amitriptyline for the pain in my arm for 8 years since WLE but only a low dose.

AnYway backwards and forwards to the GP, antibiotics, thrush treatment,blood tests, no good,eventually persuaded my Onc(hes not really interested in side effects)to let me have 6 weeks off Femara which probably wasn’t long enough because although it improved slightly I still had problems although I didn’t need to constantly suck ice cubes during that time which I had been doing. I drink litres of water a day.

I decided with my GP to wean myself off amitriptyline which I have been off now for 3 weeks because one of the side effects is a dry mouth. There is no improvement and my GP has now prescribed Itraconazole for the Thrush and yesterday I went to have blood tests for various things, but one thing that I had not realised was that as my Mother had been diagnosed in her 50’s with diabetes type 2 it might be something I had so we are now looking into that.

If nothing shows up then I am going to be referred to an Oral Specialist. My Onc has said that I can go on another AI.

Forgot to mention that since restarting Femara now have a “clicking” thumb when I bend it first thing in the morning, I have read a post where someone else had the same, hope it just stay at the thumb! Also the hot flushes have been a lot worse recently.

Fantan mentioned her digestive peroblems, yes I would agree, I do get a lot of indigestion, wind etc

I feel pleased that I am still on medication, that I am still receiving “treatment” as such but I think that the side effects should be recognised by Oncs, I think mine thinks I am being a real moaner.

Hazel