Feeling anxious about Letrazole and Radiation

Islandgirl64

I have been blessed with a very good GP, after a clear mammogram my GP referred me for an ultrasound due to a strong family history of cancer. At that ultrasound I was found to have a small tumour. I have recently had a wide local excision and sentinel node biopsy and yesterday I found out my margins were clear, stage 2 size 10mm very happy with that!

That was the easy part I am now going for radiation treatment and then they want me to start Letrazole. I am so worried about the side effects of this drug. I am a nurse and have decided to take time away from my busy job while I have radiation. I already suffer with a severe form of erosive osteoporosis arthritis in both my hands which is extremely painful and also had to stop HRT recently which has resulted in sleepless nights and soaking wet sweats. I'm so worried this is going to make things a lot worse. I live alone and so far I have coped so well with my diagnosis but today feeling very tearful and worried about how I may cope in the future with working and being alone. does anyone have any great advice or coping skills. Thank you 

Afraser

Dear @Islandgirl64

Your concern is perfectly understandable, but best to get more information before getting too worried. At very least, you should have some detailed information about why Letrozole, if there are any other options available and what difference might another treatment make. Next, starting a particular medication does not mean you have to stay on it forever if the side effects are too difficult. Reactions to Letrozole vary - certainly joint pain is not uncommon, and you are right to be concerned about the impact of that on pre-existing conditions. But not everyone gets joint pain - I have been on Letrozole for seven years and have had no joint pain at all. As I was well past menopause before being diagnosed, I can’t comment on night sweats as I haven’t had those either. Knowing more about your options may assist. Best wishes. 

Shellshocked2018_

Hi Islandgirl64, welcome to this very informative site, knowing that people here understand how you are feeling.

Things that helped me cope during diagnosis and waiting for results is Mindfulness and meditation, yoga and music, talking to a close friend or family member. I also saw a psychologist which was very helpful.
Do things that you like to do, I kept myself busy with cleaning the house so I didn’t have time to think about things, or cooking, etc.
I also visited my GP for something to help me sleep at night , as I found if I had a good night sleep I coped with things better during the day.
I also had a very good friend that I could speak to either by phone or social media if I was having a bad day and my brain was racing she would bring me back down to the here and now and was full of positive thoughts.
Being around positive people is so important. Staying positive is so important, posting positive affirmations around your home that you can read is a good idea also.
Any questions please don’t hesitate to ask, or if you need to vent, we are all here.

Sending hugs and positive thoughts your way xx

Kazmar

Hi @Islandgirl64,
I have been on Letrozole for just over 2 years now.
I was diagnosed with Osteopenia before l started chemo and my letrozole treatment.
I am 56yrs old and was shocked to find out that l had osteopenia, as l have always been very fit. Because of my taking Letrozole which can have a detrimental affect on your bones, l have been receiving bone infusions every 6 months to increase bone density. Now about my letrozole side effects,  shortly after l started them l got carpal tunnel, that got better, then tendonitis in my wrist, that also went away. I get a bit sore in the joints in the night, hot flushes, l have a little trouble sleeping, mainly because of the hot flushes. I feel a little fatigued at times, probably due to not sleeping well.
Everything comes and goes.
Lately l am having more pain in my legs and hips during the night or after sitting for awhile.
I keep very active, in fact l changed career during my BC journey and did my Diploma in Clinical Pilates.  I hate to think how l would be without my exercise regimen. Most of these conditions l can cope with,  but the problems with having sex and the loss of my libido can get me down at times. My husband is very supportive thankfully.
Just remember that not all side effects stay.
I am too scared to go off the letrozole, although not sure if l could do 10yrs.
Good Luck,
Karen

Wonk

Hi @Islandgirl64, @Afraser nailed it when she said you don’t have to stay on it forever if the side effects are too difficult.  Everyone is different and react in different ways to the medication.  That is why you will have regular checkups with your medical oncologist.  Each time you go be open and honest about how the medication is making you feel.  Write things down so you don’t forget.  I started on Tamoxifen, then changed to Arimidex, then Aromasin and have now finally landed on Letrozole.  Each gave me varying side effects and it’s important to find one that you can live with for 5 or 10 years depending on your situation.  You have to find a way to get through every day, it’s your life so be persistent about finding something that you can work with.  There will always be some side effects you’ll have to compromise with, because the alternative is to not take the drugs at all and I didn’t want to do that.  I know that for my diagnosis the drugs will help.  Don’t worry too much for now, focus on your next step which is radiation.  Being a nurse yourself you will meet the beautiful compassionate people (just like you) who do your treatments for you.  Take time out for yourself and allow others to take care of you.  You are not alone, we are all here for you too.  Take care and all the best for what’s ahead xxx

Romla

@Island Girl my diagnosis and treatment was identical to your own. I too have  had osteoporosis for some years.

Re radiation. I found it fine -the worst part was trying to find a park as my centre was on the edge of the CBD. Somethings I have learned that may help. Firstly is financial. I had 16 rounds of radiotherapy and went as a private patient. At the end I was $2500 out of pocket and some people on here with lengthier treatment in the private system had more than double that. Radiotherapy treatment is the same whether public or private and you can blend treatment in both systems. With hindsight I should have gone public. Re treatment your first session is the longest about 45 minutes where they map the area to be zapped. I had LHS breast cancer so was taught how to breathe to lift my breast away from my heart.The later sessions lasted no more than 10 minutes with more time changing than treatment itself. It is very important you choose a good emollient and use liberally at least 3 times a day - many on here swear by  Moogoo
I used Dermaveen and found it fine. In he change rooms they supplied 2 products - Sorbolene that never emptied as guess unpopular and was discontinued to be replaced by Cetaphil. The emollient most popular as forever running out was Calendula cream/ lotion. I must admit I loved it myself but had already bought Dermaveen.Dermaveen and Cetaphil are available in supermarkets. One thing do NOT cream up before treatment . I am a very fair redhead who sunburns very easily and was expecting major skin problems which didn’t eventuate. I creamed up at least 3 times per day and more if my radiated breast was hot.I had no issues with tiredness during treatment but for a few days after was exhausted so try not to plan much activity at the end - keep it simple , accept help and sleep when you need to. It’s temporary and apparently normal but quite engulfing.Onesmall tip - I went to Cairns a month afterwards and even with a rashie the heat activated my breast so no lengthy time in the sun. I creamed up for 2-3 months as long as I felt I needed it.

Like you I was terrified of Letrozole- tbh was the part of treatment that worried me most.I have been on it for 3years now and all is well.

One thing that worried me was bone thinning as I am osteoporotic. My oncologist put me on 6 monthly Prolia injections to counter this - was worried until I discovered many women I knew also have it - it has caused no problem at all and apparently helps reduce breast cancer recurrence but it is a lifetime treatment.Luckily I had had an osteoporotic fracture (rib) as the cost is $38per injection under PBS if not it would have been $275 each injection. The criteria for PBS price  is 1. diagnosed osteoporotic AND either over 70 OR had an osteoporotic fracture.You have to however be very careful with dental care - a thorough check up before starting with all work up to date and 6 monthly checks thereafter. Prolia is a bisphosphonate and serious dental like extractions and root canals run the risk of osteonecrosis of the jaw. I had had bisphosphonate tablets briefly previously - developed an ulcer and could not get dental help except from the Professor of dentistry when I needed an extraction because of the risk. Prolia only stays in your system 6 months and I have dental work done immediately before my next injection.

Now to Letrozole . The first few months I was quite stiff in the morning. I embarked on a course of daily walks for an hour. It was tough as the middle of winter and on hilly terrain.Yes I did get back ache but found I could walk thru it.The most important thing this reformed couch potato can tell you is walk every day - it made a difference not only to my physical but also my mental well being. I have never been an exercise fan and I hate quiet so my kids put hundreds of my favourite songs on my phone along with an ebook or two and I would zone out from the dreaded exercise and use it as pondering time. I bought earplugs and a runners band so I didn’t mortify the neighbourhood but understand there’s wireless technology today - saves getting tangled in shrubs.It won’t be easy initially Letrozole but you can get thru this but you must persist. If it’s intolerable after 6 months there are other alternative hormone therapy tablets that may be better for you.

Gee whiz I have written a lot. If there’s anything I ‘ve missed or can help with just ask - am more than happy to help as are many others on this site.

PS I was post menopausal when I started Letrozole so the few hot flushes I had did not bother me plus I am retired.I do however run a busy larger family of teenagers.Finally I may be wrong but my observation is that those who have had chemo have a tougher time on hormone therapy possibly because of the impact those drugs have had on their bones.It also may be harder for those who have yet to experience menopause. Good luck - we are always here 24/7 ask away , chat or even share a Friday funnies  - you are amongst friends and we get it.

Romla

@Island Girl
I don’t think you need time off work for radiation but a few days off at the end would be wise. Make sure you make time at work to cream up possibly 2-3 times per shift.

Romla

@Island Girl a front opening bra helps for creaming up  - I bought mine from Target. They will get quite grubby because of the emollient. After things settled I switched to a sports bra - when introduced they were called “aah “ bras and yes they are - so comfy even for a bigger breast.

Beaglemum

Hi @Islandgirll64 I finished radiation 5 weeks ago and started on Letrozole maybe 9 weeks ago.  As all the wise ladies on here have said - make sure you cream up - I used cream a lot and it helped - I did end up with skin blisters under my breast right at the very end - however this was soon sorted by the nurses - so if you are experiencing any issues let them know - and it can be quickly sorted.  Other than that no issues.  I didn't need time off work - went at the end of each day so that made it easy to carry on working.  

I started on the letrozole at the same time I started radiation - I found I had sore ankles and when I spoke to my Oncologist she said it could be a side effect from the tablet or it could still be left over side effects from my chemo - i had TC and ended with fat legs and ankles (commonly known as cankles)   the only way to find out who was the culprit, was to come off the tablets for  a couple weeks to see if it made any difference (i was worried about coming off them so soon after starting as I had only been on them 4 weeks)  Basically if it made no difference it wasn't the tablets - I had 2 weeks off, I didn't feel any significant difference so after 3 weeks break I've  have started them again.  Ankles are still a bit stiff but I'm hoping that will go eventually.  I had a bone density scan before starting as well and am on 6 monthly infusions of Zoldronic Acid (bisphosponate) to help my bones which will hopefully prevent any further deterioration from the letrozole.  All of these things are part of the new me and I accept that I have to live with them and they are all very do-able.

Wishing you well and fingers crossed you'll get through this next stage without any problems - but let your Onc know if you are experiencing any issues - they can change your medication and you don't have to live in misery or pain unnecessarily.

Take care xx

Romla

@Island Girl Just remembered asked mymedicaloncologistabout what to take for joint pain whilst on Letrozole.To my surprise he did not say analgesics like Panadol Osteo he said Krill Oil.( not fish oil as think is stronger) Anyway I took one tablet daily for the first 2 plus years on Letrozole  - no idea if it worked but too afraid to stop and find out.

Islandgirl64

Kazmar said:

Hi @Islandgirl64,
I have been on Letrozole for just over 2 years now.
I was diagnosed with Osteopenia before l started chemo and my letrozole treatment.
I am 56yrs old and was shocked to find out that l had osteopenia, as l have always been very fit. Because of my taking Letrozole which can have a detrimental affect on your bones, l have been receiving bone infusions every 6 months to increase bone density. Now about my letrozole side effects,  shortly after l started them l got carpal tunnel, that got better, then tendonitis in my wrist, that also went away. I get a bit sore in the joints in the night, hot flushes, l have a little trouble sleeping, mainly because of the hot flushes. I feel a little fatigued at times, probably due to not sleeping well.
Everything comes and goes.
Lately l am having more pain in my legs and hips during the night or after sitting for awhile.
I keep very active, in fact l changed career during my BC journey and did my Diploma in Clinical Pilates.  I hate to think how l would be without my exercise regimen. Most of these conditions l can cope with,  but the problems with having sex and the loss of my libido can get me down at times. My husband is very supportive thankfully.
Just remember that not all side effects stay.
I am too scared to go off the letrozole, although not sure if l could do 10yrs.
Good Luck,
Karen

Thank you so much for all this information about your experience. I think exercise is really important and will definitely be participating in regular exercise. I am seeking some more information over the next couple of weeks as my hands are already so very painful and I am very limited to what I can actually do with them already so I am really concerned that any more pain would be really hard for me to continue with my nursing. Everyone in this group is so friendly and helpful. Good luck with your journey I truly hope it gets better for you 

Kazmar

@lslandgirl64
The tendonitis was very painful, it developed about a year after starting letrozole, l tried resting it which didn't help, so l started with wrist exercises and also strengthening, push ups, etc and it eventually went away.  Sore feet were also a problem after chemo, l find walking barefoot and using a small ball to roll under my feet has helped.
The sore joints are usually while trying to sleep.  The painful sex is an ongoing problem, started almost immediately after starting Letrozole.
I haven't figured out the best way to deal with this yet.
I did not have radiation, so no advice there.
I just recently (Feb) had a breast lift on my non breast cancer breast and a nipple created on my implant reconstruction breast.
I did not realise how much l missed having a nipple until waking up after surgery and looking down. Also having both breasts at the same height is nice. My plastic surgeon did an amazing job.
Good Luck with your radiation and the Letrozole.
Karen

Romla

I think @arpie may have had problems with her hands and might be able to help.

Afraser

Hi @Islandgirl64

You may find the special group, Lets Talk about Vaginas, useful regarding painful sex. It’s not uncommon with Letrozole. Best wishes.

Blondy

@Islandgirl64
Everyone reacts differently. For me the first six months on letrozole was horrid. Incredible painful hands and a trigger thumb, plus lethargy. I changed to anastrozle and haven't looked back. Good to know there are alternatives. All you can do is try, and see what suits. 

TerryTee

@Islandgirl64
You say it might be hard to continue with your nursing, do look into your insurance that comes with your Superannuation.  If you can't work then you may have a claim for compensation under that insurance.