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Letrozole. Thinking of opting out.

20 Nov 2022 21:14

I was diagnosed with early stage invasive ductal carcinoma following a routine mammogram earlier this year.  I had a lumpectomy with clear margins and clear lymph nodes.  I was supposed to have radiotherapy earlier in the Autumn but that all had to be postponed as the major abdominal/urological surgery I had been waiting on was brought forward due to the earlier availability of the surgeons involved. It had originally been planned in to give me some recovery time but that didn't go as hoped. This was due to the benign condition which I've had for almost 20 years resulting in major surgeries, medical retirement, awful pain and a huge disruption to my families lives etc so to be honest the benign condition bit is a joke. Because of that I haven't really given much thought to the cancer and to be honest the diagnosis went straight over my head. It's the treatment and appointments that have been the issue rather than the diagnosis itself.  Unfortunately I've been unwell since the major surgery having spent ages in hospital and have had excessive weight loss as I've been nil by mouth for extended periods of time due to bowel obstructions and it's reluctance to function.  Had I had my own way I would have opted out of radiotherapy because I feel it's a waste of time with the other stuff I have going on which is too complex for my NHS Trust to deal with and benign or not I feel as if it's killing me.  I felt forced into radiotherapy by my family and had I not gone ahead with it had planned to move out my family home into a rented flat because I've struggled to cope with the pressure. I spoke to the radiotherapy nurse about my wish to opt out. She asked an oncologist to speak to me again thinking that I'd be persuaded into the treatment but was basically told I was a bit far out from surgery so it was less likely to be useful,  any further delay was a waste of time.  I was started on Letrozole which initially was fine.  Hot flushes and night sweats but no other side effects.  Unfortunately I'm still unwell following surgery and am struggling to see how I can improve this. Some days are better than others but I'm exhausted, can't maintain my weight despite a good dietary intake/supplements etc, I was slim in the first place so too thin now.  I saw the specialist gastroenterologist who see's me earlier this week but was so upset afterwards.  I have to travel to the other side of the country for the appointment. Basically brain fog, feeling exhausted, problems with speech, recurrent oral thrush and sores in my mouth making eating painful and unpleasant.  Everything tastes bitter and metallic, freezing cold all the time often with navy discolouration of my lips and limbs, vaginal bleeding, twitching etc I can't even remember what was said and had to keep apologising because I struggle to finish a sentence and lose my train of thought.  She thinks my symptoms are due to iron deficiency which until then hadn't been mentioned although I had been taking over the counter iron off my own back because I knew this would be the case.  I'm concerned that Letrozole may be part of the problem as many of the side effects are shared.  After speaking with my family we're now in agreement that if I opt out that's fine.  I've agreed to persist until December when I have a telephone consultation with an Oncologist.  I'm then planning to stop and cancel all further follow ups, mammograms etc because if anything was to be flagged up I won't be willing to have further treatment.  In fairness I can't fault the care I've had in relation to the cancer but the other emergency admissions were absolutely dire and downright dangerous.  I should say I worked as a Staff Nurse for 30 years prior to ill health retirement.  Another reason for opting out is that I still have no access to care, even emergency, in my NHS area for the other issues which has resulted in awful depression. This is despite opting for a less complex type of urostomy in place of what I had previously to allow me to be seen nearer to home.  I've made the decision to opt out of all my NHS care and medications apart from gastroenterology at present.  I need a GP to prescribe the medication but that's all as I won't be looking for further care from them. Has anyone else experienced side effects from Letrozole after taking it for several months rather than further down the line or made the decision to opt out for similar reasons? Has anyone found low mood a worsened problem when taking it?  Thank you.

 

Letrozole. Thinking of opting out.

21 Nov 2022 01:30 in response to AnneC

Hi AnneC

Sounds like you're having a horrible time of it. It all seems a bit overwhelming, so many things to deal with at the same time.

I was diagnosed with bilateral breast cancer in 2018, I had both invasive ductal and lobular. I did 3 weeks of radiotherapy, which was rather tedious, but necessary in my case, and took tamoxifen at first, which was horrendous but thankfully tests showed I was postmenopausal and was switched to anastrozole. I took has hot flushes and night sweats and it made my life miserable. I went to my GP who prescribed Sertraline and within about a week the hot flushes and night seats disappeared. 

It also lifted my mood, over time the sertraline has become less effective and I get some hot flushes but no night sweats but my mood is stable.

 I have little to do with my original breast team and lean on my GP when I need help. I couldn't imagine closing down relations with my GP. and would advise you not to. 

I'm 4 years into this and it has got easier to deal with and I know if I have any concerns I can go and get support, it's reassuring to have that safety net there.

I know you have had your fill of NHS procedures etc but don't write them off or indeed the medication you require for the cancer. You too can find solutions that work for you if you confide in and trust your GP..

x

 

Letrozole. Thinking of opting out.

21 Nov 2022 07:32 in response to Magpiemaggie

Hi Magpie Maggie,

 

Thanks for your reply.  I'm glad you've found treatment that helps with your symptoms Maggie.  I recently changed GP surgery so haven't really had much interaction with my GP.  I have spoken to him about opting out.  He suggested that I continued to see him if required but didn't try to talk me out of opting out of everything else.  Unfortunately my other NHS care has been chaotic for years partly because it's spread over 3 NHS areas who don't communicate with each other.  I feel it's the stress of all of this that has caused depression and apart from opting out I don't know how to deal with it as I have no trust anymore.  I'll think about what you've said over the next couple of weeks prior to my next appointment and see how I feel by then.  Thanks again for your response to my post.

Letrozole. Thinking of opting out.

21 Nov 2022 08:04 in response to AnneC

Hi Anne. So sorry you've had such a rotten time. My case is not at all as bad as yours. I had a tumour removed last March followed by 6 cycles of chemo, radiotherapy and then the drugs. Oh the drugs! First Letrozole, then Anastrozole and finally Examestane. I kept switching because of the awful side effects. Hot flushes and night sweats were horrible but I could deal with them. The brain fog was sooo infuriating, but I'd live with it. For me it was the absolutely horrendous joint pain in my wrists and hands that made me keep switching until finally about 4 weeks ago after a year of misery I pulled the plug and said no more. I'm waiting for an improvement in my symptoms. The flushes and sweats stopped almost immediately but the brain fog and joint pain are no better yet. If I were you, and clearly I'm not, I would see if Anastrozole or Examestane suit you better. I'm surprised you've not been offered the chance to do that. I tried all 3 drugs to no avail but you may find a different drug that does exactly the same job kinder to your body. In my case I decided my quality of life was being too severely compromised by the fuzzy head and the painful hands to continue. Only you can decide if you feel the same way. It's not an easy decision. I am alone with no one to help me decide what to do but in the end even with someone to talk it over with ultimately it would have had to be my decision.

I wish you all the best. You are clearly a strong lady to have endured so much, remember that. Good luck!

Big hugs, Mog, xx

Letrozole. Thinking of opting out.

21 Nov 2022 12:40 in response to Moggymad62

Hi Moggymad62,

Thank you so much for your reply.  It sounds as if you've had a really difficult time too.  I briefly saw the radiology support nurse on the final day of radiotherapy but because radiotherapy had to be rescheduled it has caused a bit of a mix up with appointments and I've had to be transferred over to a different oncologist for follow up.  I haven't had a discussion about side effects of Letrozole or changing medication as yet.  I know I could contact a breast care nurse but am trying to persist with the medication until my telephone consultation next month.  I was diagnosed as borderline carpal syndrome a while ago but wore splints which solved that and until recently had no symptoms but like you am now having pain in my left wrist as well as worsening leg pain which has been a nuisance because I already had neuropathic pain there.  I had been on and off hrt for a while due to constant hot flushes.  I came off it several months prior to the cancer diagnosis and was relieved that the hot flushes had stopped but they're now back although not so frequently. You must have found it very difficult not having anyone to talk to. Dealing with mixed emotions must have been hard for you. At the moment my husband is being supportive but he's really struggled to cope especially when I was so ill in hospital.  When he's not coping things tend to get very heated so I feel as if I'm having to walk on egg shells.  I'm sorry if I seem to be wallowing in self pity right now.  Because of the other chronic health issues and to blank out pain I had managed that in the past by having a really active, busy life with hobbies and fitness which also helped with sleep.  I think I'm feeling so miserable right now because I'm not well enough right now to go back to this. 

You've been brave in making the decision that's best for you.  I hope everything goes well and that your pain settles down soon.  

Letrozole. Thinking of opting out.

21 Nov 2022 18:57 in response to AnneC

Hi Anne. I had another thought. Have you thought of maybe trying an antihistamine? I suffered very bad bone pain from the zarxio jabs I had to have while I was having chemo. When I mentioned it to my oncology nurse she recommended antihistamines and they were nothing short of a miracle cure. I'm absolutely not saying that they will definately work for you but they may help. You can buy them quite cheaply over the counter in any pharmacy so may be worth a try.

I understand you wanting to wait to talk to your oncologist before making a change in medication. Hopefully he/she will listen sympathetically to your concerns and will help you decide what to do. It's a shame that you feel you can't really talk to your husband about how you feel. I guess he's just worried about you and is feeling the stress - sometimes it can all be a bit too much. I feel that I deserve an Oscar for my performance this past year and if one more person tells me how well I am coping I may scream. I don't feel like I am coping at all. Three weeks ago I lost the use of my right leg below the knee and had an emergency consultation with a specialist neurosurgeon 4 days ago about it. Unfortunately he told me that it was probably the chemotherapy that has damaged the nerve in my spine (I've had numb fingers and toes since cycle 5) made worse by an existing spinal injury from a bad riding accident over 30 years ago. He said that surgery would be "extremely risky with a slim chance of success" His words not mine. I have to go back for more detailed scans and to meet with another surgeon as it will be a 2 man job. Its all very, very scary. There is definately a part of me that wishes I'd not had the chemo as I feel that I will never be rid of of its legacy. Its too late now, all I can do is keep plodding on, one day at a time and I guess that's what you are doing too - one day at a time. What date do you see your oncologist? Hopefully you've not got too long to wait. Keep in touch. I'm always here if you want to talk and don't want to bother your hubby with how you're really feeling. Sometimes it's much easier to talk to a stranger, especially if that stranger knows exactly what you are going through.

Keep your chin up, you are stronger than you think and you will do this,

Virtual hugs through the ether, Mog, xx

Letrozole. Thinking of opting out.

21 Nov 2022 22:55 in response to Moggymad62

Hi Mog,

Thank you so much for your kindness Mog, especially when you have problems of your own.

I always have antihistamines at home so will start taking them and see if that helps.  

I know my husband finds all of this difficult.  His mother died from lung cancer when he was a teenager, his older sister and brother both died from cancer a few years ago so it's not surprising he's anxious.  In fairness to him my recent surgery was on the other side of the country and he insisted in leaving work early to come through for visiting each evening so he's been pretty exhausted with it all too.

We're all too good at putting a brave face on things. We smile and chat to people as if we're coping really well when that's often not the case.  When I had to be medically retired from work 9 years ago I was determined that I wasn't going to let surgery hold me back so flung myself into loads of activities.  I did a lot of voluntary work including arranging and running support groups and moderating for facebook groups.  I decided recently that I just couldn't cope with that right now so have had to step down but it's left me with guilt as I feel I've let down members who had become friends.  I hope to be able to return to that in the future but don't feel I'm in the right frame of mind right now.

I'm so sorry chemotherapy has left you with nerve damage. Sometimes when we consent to treatments or surgeries they treat the illness or condition we have but there's always the risk that we're just swapping existing problems for new ones.  Unfortunately we can't predict this beforehand so just have to go with the specialists advice or the standard treatment plans. I hope the other surgeon you see can perhaps give you more reassuring advice. You must be very worried but hopefully once you've had all your scans that'll give the surgeons more information and perhaps other options.

My appointment is mid December.  It's a telephone consultation so hopefully I'll have time to ask some questions.

Like you, I'm trying to put my head down and keep going.  I've been aiming for timescales recovery wise and hope when I start to feel a bit better I'll gradually be able to resume some of my old acivities. I'm usually completely happy with my own company as I've always had plenty of things I enjoyed doing on my own. I have realised though that being at home all day yourself isn't very helpful. I imagine you probably experience that too. I miss interaction with others much more than I would have expected.

I hope things go ok for you.  Please keep me updated on how you get on.

Sending you best wishes,

Anne xx 

Letrozole. Thinking of opting out.

22 Nov 2022 05:49 in response to AnneC

Good morning Anne! Just read your latest message, as is quite usual for me I have been awake all night so I thought I'd send you a reply to help fill the time til dawn.

I really understand what you were saying about the guilt of having to give up much of your volunteer work. I spent 10 years as a volunteer classroom assistant in a primary school working with 6-7 year old and absolutely loved it. I had to give it up when my dad became ill but was struggling anyway with my back pain. A spinal injury and tiny tables and chairs are not a good combination! I felt I was letting my teacher down but had to leave - it was a real wrench and I still miss it 7 years later. I'm sure that when you feel a bit better you might be able to take up some of your voluntary work again or maybe find something else you can do instead. For the past couple of months I have been volunteering in my local hospicecare superstore working upstairs in the office researching and listing things on ebay. It's a really interesting role as I never know what is going to come across my desk. My best find so far has been a Japanese copper plate that if genuine could be worth £600. Anything that comes in that might have a value of at least £10 comes upstairs to be researched and if it is indeed worth a bit it gets photographed and listed on ebay. I am really enjoying it (especially the photography - I fancy myself as a bit of a David Bailey!) and hope to continue as long as I can. I'm hoping that if I do go ahead with the surgery on my back I won't have to be away from the job for too long. Maybe you'd be interested in something like that, it's a very interesting, not too strenuous role.

I completely understand why your husband is finding your illness so difficult to deal with after losing family members to cancer. I'm sure he's fearing the worst but hoping and praying that you will be OK. I'm also pretty sure that it must be difficult to tell him how you really feel as I expect you want to reassure him that you are feeling better than you really are. You can always tell me how you feel, you can tell me the truth and don't be afraid to have a good old moan. Let it all out, it's better than bottling it up. It sounds like we are very alike in not letting on to folk just how rotten we feel. I didn't find this forum until late in my cancer journey and really wish I'd found it a lot sooner. It's good that you are here and talking about just how unfair, miserable and downright brutal the cancer treatments can be. I found that the initial sympathy that I got when first diagnosed gradually drifted away and once I'd finished my chemo and radiotherapy I'm sure that people thought I was "better". In fact I found the past year on the various oestrogen suppressing drugs harder in many ways and I don't think people appreciate just how miserable I was. They also don't understand what a toll it takes mentally. Its hard keeping up a brave face when you feel fed up, scared, tired and generally really rubbish. That's why I think this forum is so great as it gives you a chance to link up with someone who has been through all the same things and knows exactly what we mean when we say honestly how we feel.

You mentioned that you are generally happy with your own company. I'm the same. Honestly, the covid lockdown didn't bother as much as it did other people I know. I'm a great crafter - keen I should say, I'm not bragging that I'm "great". I made 2 lockdown art journals working on a page a week with news updates and a different medium on each page. I expect they'll end up in the recycling bin once I pop my clogs but maybe someone might find them interesting. It doesn't really matter, I enjoyed making them. I'm currently working on my Christmas cards a little later that usual as I like to start on them in August. The delay this year is due to the fact that I got my craft room (yes, one advantage of living alone I'm lucky enough to have turned my spare bedroom into a craft room) decorated and had a new carpet in there. Unfortunately there was a fault in this new carpet and after being told initially that it was just a mark from where it was rolled and that it would fix itself they agreed that it was indeed faulty and it should be replaced. Of course this meant the entire room had to be emptied again meaning my Christmas card production line was late starting. Anyway, I'm working on them now in the craft room of my dreams. It took me 2 whole years to find the wallpaper I had set my heart on and almost as long to find curtain material and the carpet. Patience is a virtue they say and in the end I got what I had dreamt of ever since moving in here 15 years ago. Apart from all the paper crafting I am also a keen crocheter although that has been harder since the joint pain in my hands. I can only do about 10 minutes at a time now but hopefully my hands will prove now I'm off the drugs.

On the subject of the dreaded drugs did your oncologist do the NHS Predict with you? If not you should try and get it done. If you don't know (and I didn't until a good 6 months of misery on the Letrozole and Anastrozole) it's a test that takes all the details of your cancer and what  treatment you've had and it tells you your percentages of the chance the cancer will return. I did mine and it transpired that my chances only improved by 2 percent on the drugs. That's the main reason I decided to stop the them. All that pain in my hands that I feared would become permanent if I continued taking the pills for just 2 percent - just not worth it. In my view that is, you may feel differently. If you've not done the NHS Predict I would definately ask your oncologist to do it with you as I'm sure  will help you in making informed decisions going forward.

Got sidetracked there but I wanted to ask, what do you like to do to pass the time at home? Are you a crafter like me? If so, what are you into? I also love to read and listen to music especially at night when I can't sleep - I have Bruce Springsteen singing "Thunder Road" as I write this. Who do you like music wise? Apart from Bruce I love Big Country and am also very fond of country music and 60's/70's as well. Showing my age there although I do hasten to add that I wasn't actually bopping to the 60's music as it happened!

Well I think I've rambled on for far too long. Hope you've made it to the end of this post without falling asleep! I've been thinking - always a dangerous thing especially with my chemo befuddled brain but was wondering, would you like to message with me privately? I'll add you as a friend and then we can chat just between the 2 of us. I feel that we have made a connection here and I want you to know that I am here for you. Whatever you want to talk about, cancer related or not, it's all fine, even if you just want to moan about the price of food in the supermarket!

I'll end now. You take care, keep your chin up and together we will get through this.

Love and virtual hugs, Mog, xx

Letrozole. Thinking of opting out.

22 Nov 2022 10:06 in response to Moggymad62

Thanks for your reply Mog.  It's been interesting reading.  Like you I don't sleep well but try to avoid going online overnight because I have no chance of getting back to sleep if I do that. In fairness even as a child I never slept much.  It's never been usual for me to bother going to bed every night. 20 years of night duty never helped, it's been more the 24hrs of pain that has been the problem. I suffer from an overly tense pelvic floor due to the condition I had that has required all the surgery.  That aggravates my sacral nerves so I limit how much time I sit for and struggle to sleep because I can't stand the sensation of the bed clothes touching my backside. Since surgery that has improved a bit allowing me to sit longer but I pay for it when I stand up.  Prior to that I was only sitting for 15 minutes daily at dinner time, the rest of the time up on my feet.  An ironing board is permanently up in my living room as I use it as a work station.  

The Oncologist I originally saw gave me the Predict statistics based on surgery and radiotherapy alone initially.  Over 5 years the recurrence rate was really low.  Probably only about 1%.  I haven't had an update on that taking Letrozole into account.  I think with the type of cancer I had recurrence years and years further down the line can be more of an issue but since I'm 57 I'm less concerned about anything returning 15 or 20 years from now especially when I'm having other health problems which I feel are more the issue.  I have tried various prediction tools on line and 3 to 5% percent seems to be the figure given when an aromatase inhibitor is taken but without it's only an extra 2%.

Your new voluntary role sounds really interesting although I'm sure you must really miss working with children. My younger daughter is a teacher and really appreciates class room assistants.  When my daughters were younger I did the play leader training as I never went to bed after my night shifts so was really involved in that and did a lot of school volunteering too.  Anything that keeps you in contact with other people when struggling can really help although at times it can feel daunting.  I love gardening and started doing light garden maintainance work for a couple of elderly people a few years ago.  I started back at that a couple of weeks ago but to be honest even although I wasn't doing anything heavy it wiped me out.  My own garden at the moment is such a mess because I haven't been able to do much there either.  Apart from that I work with glass as a hobby.  I never initially planned to sell it at craft fairs but decided to try to recoup some of my costs as well as get rid of all the stuff I was storing in drawers.  That has been keeping me occupied but has become much more successful that I ever imagined so am trying to rein it in a bit as I'm limited for kiln space.  I have done a few craft fairs recently but need my husband to help me at present.  I had one on Saturday and virtually sold out so am frantically glass cutting this week to up my stock as I have another couple coming up soon. I envy you your lovely craft room.  I work in the corner of a workshop with a tumble dryer and fridge under my work bench, kayaks and bikes at my back and cupboards full of tools.  My husband lasers my name onto the wooden bases some of my glass fits into.  It's in the workshop too so that's been an advantage in that it's reliant on a computer and a large wall mounted screen so I can go online when I'm out there, play music or watch tv on it while I work.  He's trying to persuade me to get rid of my greenhouse and replace it with a log cabin for me to work in but since I grow a lot of our fruit and veg I'm a bit reluctant to do that.  I love reading but haven't been doing as much as I would like because of the sitting issue.  I knit and have perfected the art of doing that standing up.  Our youngest daughter is expecting her first child soon so I've been knitting for her  My only problem is that between gardening and working with glass my hands are so rough I'm having to knit with really tight gloves on as I'm snaggling the wool otherwise.

I'm quite mixed on what I like music wise too.  I like quite a lot of the younger male artists right now because they remind me of the 1970's/80's rock ballad type music I grew up with as a teenager.  I also like London Grammar and Freya Riding type stuff partly because I had those on my phone when in hospital and listened to them loudly on my headphones to drown out background noise. Anything with a regular beat seems to relax me. I always fall asleep when having mri's of all things for the same reason yet never sleep at home during the day.

Apologies again for the long winded reply. Yes, I'd be happy to keep in touch with you privately as we seem to have a lot in common.  I'm just about to start cutting glass agai so will finish my reply.

Take care of yourself and continue to do the things you enjoy.

Best wishes, Anne x