Assessing Risk of not taking Letrozole - NHS Predict and Oncotype Test?

[Seagulls]

How are you now - did you stay on letrozole? Did your joint pain improve if so?

[Milliepusscat]

Hi, my first post! I have had a knee op, expecting another knee replacement in few months. I have just finished radiotherapy after breast surgery , and have been given Letrozole. I have psoriatic arthritis, the stress of the cancer diagnosis bought on a massive flare of the arthritis, am in lot of pain.

Like most others, I don’t want to take Letrozole in case in causes more joint pain. Just wondered how it affected your joints?

rgds.

[Bella99]

My referral was mucked up so I am not seeing the oncologist until the 10 September.  Happy to share how I get on.

[Bella99]

Do you know what your oncologist took account of in your personal risk profile?  How did you get on with the oncology dietian?  My hospital do not do referrals to a dietian.  This is really annoying as otherwise there is rumour and opinion about what foods people should nor should not avoid - you see this from people who have seen nutritionists (who need no qualification) and have all sorts of yes and nos about milk, soya etc.  Facts are needed in this situation even if the fact is no one knows!

[Bella99]

It is so difficult isn't it. I was referred for a second opinion with another oncologist in a hospital in the city where I live only to rock up and find that I had been referred to a breast cancer surgeon.  I had waited 7 weeks for that appointment and I cried.  I have an appointment on the 10 September with another oncologist.  My hospital would not initially give me the histology or pathology of my cancer - which seems odd but have managed to get through the PALS service.  I am hoping that the second opinion oncologist might be able to better explain my risk and advantage on staying or coming off Letozole.  

I am a pretty positive person but Letrozole has completely floored me.  I have no energy and I am a sweaty wreck!  I need to go back to work - or they stop paying me - and at the moment I cannot see how I will be able to sustain my job.  On the other hand I am scared of the cancer returning. My life feels in such limbo.  

I am going to look at the evidence when I see the oncologist.  Apart from anything to examine whether committing being on the drug for a shorter period of time - say a year - might at least give some protection.  In looking at other posts this seems to happen for women who are younger and want to have children..  So they agree to go on the drug for a period of time as some protection and then go ahead and try for a child.  Five years seems to be a very long to be on this drug.  

I will post again when I have seen the oncologist next month.

[Daisy200]

I've got an appointment on September 20th to discuss this drug, I'm really in two minds about it.

I was initially told my cancer was slightly E+ and my initial protocol was lumpectomy/radio/letro, This was from the biopsy.

Post surgical analysis of the tumour I was told the E+ was so low it was being disregrded. Yay I said. No they said, this means you need chemo. Oh, i said.

So I did the FECT followed by the radio and on my last session, just as I thought I was about to walk free, my onco mentioned the letro again. 

I did tell him he'd disregarded the E+ once and he agreed and said he wasn't going to insist, He has said that he'll look into risk/benefit of it for when we next meet.

I don't want to, I think I've done enough.

[rosie14]

I was on Letrozole for 3.5 years and recently came off them as I was having a knee replacement! I discussed taking a break with my oncologist back in February and will review the situation next February. I am expecting a second knee replacement in the near future and experience awful athritic pain without adding Letrozole into the mix!
I was a high risk but had DH mx!

[Bella99]

Robbo16

It was great to see your post.  Finally someone else who wants to explore risk and question the merits of Letrozole! Apart from the NHS predict tool what other ways did your oncologist assess your personal risk profile?  Also interested in your appointment with the oncology dietian - what changes did he or she suggest? 

I have a second opinion on my treatment with a different oncologist at another hospital in the city where I live. I feel under a pressure from my wider family - although not from my husband - to stay on the drugs whatever the consequences.  So if I decide to stop I want to have the evidence to share with my family so that I am confident whatever my decision.

[Robbo16]

Hello Ladies, I thought I'd add my experience on here. I had a single mx and immediate diep recon on July 4th. I had a 7mm grade 1 stage 1 cancer and a tiny area of DCIS. At my 3 week post op appointment last week I was prescribed Letrozole and when I heard about the side effects and read about people's experiences on here, I was very sure I didn't want to take it!! The benefits didn't, for me, seem to be great enough to risk the side effects. I used the NHS predict tool which showed a very low risk of recurrence and so I discussed my fears with my oncologist today and asked her to give me a more personal risk profile rather than just following a standard treatment protocol. She thankfully agreed that my risk was very low and that I didn't need to take the letrozole. I am very relieved indeed and have asked for a referral to the oncology dietician to see what changes I can make to my diet to help keep my oestragen levels in check. I realise that it's not the right approach for everyone, but its a question worth asking .

[Bella99]

Hi Ali

I have been away for a few days so sorry not to get back to you sooner.  Yes, of course happy to share the views of the oncologist including whether there is a more accurate way of assessing risk.  I will be chasing up my appointment which I hope should be in the next few weeks.

[Ali49]

Hi Bella, i would be really interested to hear what the other oncologist says. Would ypu let me know please xx

[Bella99]

Hi Ali49

Thank you for your advice and good luck with going back to work.  

I agree that i do not want to take unnecessary risks - I have two children, and a lovely husband.  However, like with the recent findings about chemotherapy it is important to take account of the facts and figures (the oncotype test now really reducing the number of breast cancer patients needing chemotherapy). I also think there are risks to taking anti oestogen drugs including thinning bones - for instance a breakage of a hip and subsequent surgery may pose a greater risk to my life expectancy - so it is weighing up the merits.  Anti oestrogen drugs also only lower your risk my one third which when your risk is already at 1% the advantages of taking a drug with such side effects needs to be examined.

I saw my GP this morning and she suggested a second opinion from an oncologist at a different London hospital.  I will take up this offer and see whether an oncotype test would help me assess my risk and decision.  In the meantime I will keep taking the tablets and see how it goes.

[Ali49]

Hi Bella, i am on letrozole too and really struggled at first. I still have aching feet and knees but find keeping active helps. I also take a loratadine antihistamine each day and buy high5zero tablets which mix into a rehydration drink with 750mls of water. I read about both of these things on this forum and they do seem to help. I am 51 and although i know recurrence figures do fluctuate i have 3 children so feel i will persevere as long as i can with the tablets. I had my first day back at work today and i am trying to stay positive. Ask for all the help and advice you need and also there are other types of tablets you can take apart from letrozole. Also check the brand that you are taking as it can make a difference. I request the ACCORD brand from my chemist as that is the one that lots of people on here say causes the least side effects. Good luck and i hope things improve soon for you xx

[Bella99]

I had a mastectomy and reconstruction in May.  The cancer was found through screening and the tumours found were grade 1 (seven very small) and there was no movement into my lymph nodes.  My cancer was oestrogen positive.  I was told that there was a low risk of reaccurance.  I am 54 years of age.

In June I was prescribed Letrozole.  I have found the symptoms pretty awful with sweating, crying, anxiety and difficulty sleeping.  My oncologist has been helpful and added Gapapentin to the mix.  Whilst this has helped to some degree I am left being very tired and still pretty sweaty.  

Whilst I am prepared to keep on the drugs for the time being I want to explore whether I might come off the drugs altogether.  My risk of reaccurance is low from the NHS predict tool and my bone density scan showed that my bones are not great (on the low normal). I wondered whether anyone else has thought about assessing risk beyond the NHS tool.  I had thought that the oncotype test might be of use as it specifically analysises your breast tissue but this is unclear as it mostly seems to be used to assess the need for chemotherapy.  Anyone else explored about looking at risk of reaccurance against their current drug treatment and if so what tools did you use?