Hi Genene,

Thank you.

I can fully appreciate your worries, especially with your history of that inflammatory condition. I was in a different position. I had arthritis when I was diagnosed with grade 1, Pure Mucosal Breast Cancer. This cancer only affects about 1% of people and is supposed to be one of the least aggressive forms of breast cancer. I had a lumpectomy and took Tamoxifen. Six months after surgery I discovered a large lump in my other breast, which my surgeon told me was ok, but refused to test it. 

He had advised me to have radiotherapy, but I refused to have it until my other breast was tested. My reasoning was that there was no point in treating one breast whilst ignoring the other. We had a Mexican standoff for 5 months. At this stage I was referred to see the surgeon who was in charge of all the surgeons in the area. I was dressed down in a room for refusing treatment. When I pointed out that I wasn't refusing treatment but looking for a second opinion, he was much more comfortable in himself. He took me down to a consultation room and examined me. He immediately sent me for a mammogram, ultrasound and biopsy. Fortunately, the lump was benign. He offered to take over my treatment and I was happy to accept that.

I did look into the benefit of having radiotherapy at that stage. The surgeon referred me to see two researchers in radiotherapy. One gentleman suggested that I might as well try it anyway, but the other disagreed. He said that there was no point in having it unless I had it within 3 months of diagnosis. He gave me some strong evidence for this and I decided to accept his advice.

A month later I discovered a lump in my original breast and wasn't so lucky this time. I had a double mastectomy and was advised to take Letrozole, as the Tamoxifen hadn't worked for me.

My mother died from secondary breast cancer and I was worried about having so many re-growths in such a short space of time, especially when my cancer was not supposed to be aggressive. I was not given much information about the side-effects. In fact, I was just told that it could cause some joint pain. It certainly did. Every joint in my body was sore and I had to have both knees replaced. I also developed eye problems and have since had 7 eye operations. I piled on the weight, had night sweats, etc, etc.

After my mastectomies, I was advised that I didn't need radiotherapy or chemotherapy, so I felt that I should have something to try and prevent any further cancers returning. Despite all the adverse side-effects I decided to see this through to the end of the course. I stopped taking Letrozole in July 2017, but still have problems with my joints. To be fair, it is difficult to predict how these might have progressed without treatment. I now use a mobility scooter to get about locally and rely on my car more than I did before, but I still lead a busy and full life and am still working at 71.

Sorry for the long diatribe, but everyone's story is different. If I had taken radiotherapy at the right time, I might not have persevered with Letrozole either.

I am glad to see that you have looked at the percentage benefit of taking hormone therapy for you and would agree that 2% is not all that significant.

Many people come on this site and decide against certain treatments without looking into the benefits properly. Your first post didn’t indicate that you had, hence my first reply. Whatever treatment you accept has to be the right one for you and you alone and, so long as you are happy with that this is all that matters. Everyone’s cancer experience is individual to that one person, as there as so many additional individual factors which govern outcome. Hence there is ‘no one fix for all’.

I do hope that all goes well for you and remember that we are here to support you every step of the way.

Kind regards,

Jolamine xx

Dear Jolamine

Your story is an inspiring roller coaster of a journey of survival through the ravages of Cancer.What struck me about such an ordeal was your bravery in standing up and making your voice heard.

I have so much admiration for the way you approached your heartrending situation and how you weren't intimidated by the way forward.

It's so heartening to hear that you are now fully recovered.

As you say....and I completely agree... everyone has to make an informed decision that is right for them .The importance of doing some research pays dividends and I am so pleased I came across this site,and you.

My own way forward has been validated by all the wonderful  stories I have read from so many Cancer survivors. 

Long may this site prevail and long may we all continue the good fight against this cruel disease.

Take care and stay safe Jolamine.Thank you so much for sharing your story.

Kindest wishes,

Genene.

Hi Genene,

I have to say that standing up for my beliefs was not all as straightforward as it sounded. I am a strong person who runs my own business, but there were times that I began to question my own sanity by the appalling way I was treated.

At one point I was even threatened with sectioning by an oncologist on my first visit to see her. Fortunately, my husband was with me and we were both able to talk her down and explain that she had completely misinterpreted the meaning of what I had sad to her. A lesser person would have buckled under her insistence that I was threatening suicide, when this had never even entered my head.

It was such a pleasure to attend my new care team by comparison and, I am deeply indebted to them for all the care and guidance they have offered me. This is why I say to people on this forum that you really do need to have faith in your care team. It has made all the difference in the world to me.

Kind regards,

Jolamine xx

What an incredibly bad experience,Jolamine.

Thank goodness you have been able to move on from those difficult times and that now, following the excellent support of your husband and your care team,you are able to offer such invaluable words of wisdom to those of us who are new members of the site.

I have had similar brilliant support from my NHS Care Team.

I am grateful to you.

Kindest regards

Genene.xx

Thanks so much for the reply Kebbs.

How interesting that you took HRT for 15 years too!

I am convinced this was the cause of the tumour,but it was my choice so I knew the risks.

It has helped enormously talking to you.Thank you.

So good to hear your positive outcome from the breast matching surgery.Well done!!

I am inspired!

Very best wishes,

Genene. 

Hi Genene, 

you mentioned taking HRT.Do you know there are two types of Hormone treatment commonly referred to as HRT. The first is Hormone Replacement Therapy, as used during menopause. The second is Hormone Repressent Therapy and this is normally used after breast cancer. It is meant to block the production of oestrogen which many cancers feed on. Anastrozole , Letrozole, Aromasin etc are all examples of Hormone Represssant Therapy and are important treatments. Unfortunately they come with side effects and it's trial and error till you find one that suits. Aromasin/EXEMESTANE is my 4th try and suits me best. Letrozole was just awful but we are all different. 
hope this helps in any future decision making. 

I have been on letrozol for three years although I had a very bad back and had a mri because I worried y to he cancer might have moved there I was told it was arthritis wets and tear but this year my legs have been reall sore with twitching muscles you could see my doctor told me it was faciiculation that was in may I still have it and can't walk too fr because of a bad back hips and sore legs   Does anyone else have twitching muscles it's driving me mad  I've been told to stay on letrozol for 7//12 years he said if it got too bad he woul Change the tablets I'm on accord but I'm sure the brand was change because the package is different  I spoke to the chemist to see if they new the original one I was on but no they didn't   The next one they  gave me passed by fda was not passed by cancer research so I took them back  the chemist said we can't keep a check pn all these pharmacies 

Hi, some of your leg pain problems are very similar to the ones I suffered, my walking ability was seriously impaired, I qualified for a blue disabled parking badge!

I have been so much better on Aromasin/EXEMESTANE , I have had different packaging and brands too but have not noticed a difference.  Seriously push your consultant to change to another drug. You are entitled to, quality of life is so important after all you have been through with cancer. 7/12 years more of the same is not really acceptable without a very good reason, this week was my 70th birthday, next month will be 5 years clear, I look forward to my life when Covid-19 is gone. 
good luck

Hi Scania68,

I'm sorry to hear about your secondary cancer but please don't beat yourself up thinking you caused it. I was diagnosed with stage 3 breast cancer and mets in lymph nodes July 2018. I had chemo, mastectomy and full lymph node clearance, then radiotherapy. I was put on tamoxifen and zoladex injections, which I took religiously. That gave me all the side effects mentioned above and made me feel really old (I was 39 when I started taking them and previously very fit and active). However, September 2020 I was diagnosed with secondary breast cancer in the neck glands, liver, lung, rib and hip. Unfortunately the drugs don't always work. I have now been changed to Letrozole and Zoladex (hormone treatment), abemaciclib (oral chemotherapy) and bone strengthening. Following my 3 month scan we are still unsure if the drugs are working, as the cancer has spread more but may have happened prior to starting the new treatment? I have another scan this month to see if there is an improvement so fingers crossed it has started working. 

The dreaded cancer can get us regardless of taking the medication. Try to stay positive Scania68 and be assured that you didn't cause the secondary. 
 

Take care. 

Hi sweet my name is Elaine I was on letrozole myself un till recently and yes I had some of the side effects that you have already mentioned but not to the same degree but I have had to live with short term memory loss since being on them and it,s been hell living with a head full of fog my heart goes out to you hang on you can do this