Thank you. It was other side effects that improved not the arthritis. Never know with that anyway because it varies so much depending on weather etc as you will know. Unfortunately I don't have a useful relationship with the oncologist who took exception to me asking too many questions. My gp is at least very helpful and an excellent go between so I do discuss with him. I just find it very frustrating that it's always take their drugs or don't but definitely don't ask about alternatives.

Hi Sajom,

I had similar problems with my first consultant, who refused to test a lump which appeared in my other breast shortly after my lumpectomy. He wanted me to have radiotherapy, but I refused, saying that there was no point in treating one breast whilst ignoring the other. I am like you, I went with a pile of questions each time, which he objected to. He was a very pleasant gentleman, but I considered him to be inept and, his nurses were hopeless too.

We had a Mexican standoff for 11 months before he referred me to see the surgeon in charge of the area. When I saw him, he dressed me down saying that they couldn't have patients dictating what treatment they had. I pointed out that I would be quite happy to accept treatment, but that I thought that I had been sent to him for a second opinion.

He was immediately more at ease and, brought me down to an examination room. He found the lump immediately and did a mammogram, ultrasound and biopsy that day. He offered to take over my care and, I have never looked back. It has made such a difference to have a surgeon that I had faith in. His nurses were also extremely helpful and, I could always contact them when I was worried about anything. I discovered another lump in the first breast a year after I had my lumpectomy and it was great to be able to place my faith in this new surgeon to have a bilateral mastectomy.

Just go with your gut feeling. You need to know everything before you can agree to any sort of treatment and, if your consultant doesn't give you all the facts you need to decide, then you must ask questions. Going to another hospital adds another 3 hours on to my round trip to the hospital, but, I'm so glad that I did this. Would this be a possibility for you too?

Kind regards,

Jolamine xx

Wow, that's awful. Why on earth shouldn't you have a say in your treatment.

It really saddens me that since I trained as a nurse in the 1970's the attitude to patients by some, very definitely not all, health staff hasn't improved at all. 
We are after all supposed to be giving informed consent but you have to fight for information and I was complaining at one point about people informing me that they were deciding on my care plan. With no reference to me! 

Hi Sajom,

I work in one of the professions associated to medicine. They always say that doctors and nurses make the worst patients - possibly because consultants feel that the little medical knowledge we have, puts them to the pin of their collars?

We hear so much about 'informed consent', but sadly, our experience is not uncommon.

Just stick to your guns!

Kind regards,

Jolamine xx

Thank you Jolamine, 

You've just given me more encouragement than I've had in the last 16 months.

Same here , specially the sweating , I hate that but I also forgot to put them in my days of the week pill box and I started getting side effects, crying , bad thoughts , fealing as though I couldn't be bothered with anything, even panicky , which I don't remember feeling when I stopped taking Tamoxifen the first time round. Wondered if anyone else has made the same bloomer. These side effects are countless , one you missed out my skin is getting visibly older and dry, I've never used so much body lotion. 

Hi AnnieR,

Welcome to our forum. I am sorry to hear that you are suffering side-effects with Letrozole. I found the opposite. With Tamoxifen I had horrendous night sweats and severe emotional responses. I first of all tried Clonidine to help with the night sweats - this did nothing for me. I was then advised by my breast care nurse, that Venlafaxine, a mild anti-depressant had helped a lot of patients. I was reluctant to take an anti-depressant, but eventually tried this. Although it didn't do away with the sweats, it did reduce the severity of them

A year later, having had a second cancer, I changed to Letrozole. My emotional responses improved dramatically, but all my joints started to give me problems and I had to have 2 knee replacements and 5 eye operations as a result. My skin also became very dry. I found it impossible to cream my entire body, so I was prescribed Hydromil bath and shower wash, which helped with the 'hard to reach areas', as I continued to attend to the areas that were easier to reach.

All of these treatments carry their own sets of side-effects. These occur to a greater or lesser degree with different treatments. Having said this, some people seem to sail through with no side effects at all. I took Tamoxifen for 1 year and Letrozole for 6. I had no additional problems when I stopped taking either of them.

I stopped taking these in July 2017. Sadly, the joint pain and night sweats still persist all these years later.

How long have you been taking Letrozole for? Sometimes the side-effects lessen as you get used to them.

Kind regards,

Jolamine xx

Hi Jolamine, I've only been taking Letrozole for the last 18 months but as you say perhaps some side effects will improve but the most recent is getting up in the morning and feeling like I'm wearing wooden clogs just like I was on tamoxifen. I've just been told by the consultant that I can't take my chemo tabs anymore as my neutrophils go down dangerously low so will just be CT 'd from now on to keep an eye on any changes. I've got this for the rest of my life so any help with managing Letrozole would be a bonus.  xx

Hi Annie.R,

I felt the same as you about my arthritic changes at first. I had a tendency to arthritis before I started taking Tamoxifen and Letrozole, so it's impossible to say how much worse these medicaments have made my joints. It is a well known fact that Letrozole causes joint problems, so this could well account for your 'wooden clogs' sensation. If this is only happening in the morning or after rest, chances are that the fluid in your joint capsules, which acts like a lubricant, hasn't been moving around the joint whilst you are at rest. It takes a little while for this to redistribute before movement becomes easier again. Have you spoken to your GP about this?

I am sorry to hear that you have had to stop your chemo and that you are now relying on regular CT scans to keep an eye on any changes. This is possibly a good reason to stick with Letrozole, or something similar to give you a better chance.

If you want to give us a list of your side-effects, we'll see what we can suggest to help you. It would also be helpful to know what type and grade of breast cancer you were diagnosed with.

Kind regards,

Jolamine xx