Hi Kiwirunner 

Thanks so much for your reply. It helps loads to know you are not the only one suffering those side effects. I’ve been lucky too not to suffer from the fatigue....yet...

Although I have been a bit breathless when out walking but determined to keep it up as it’s my only form of exercise and you have to do something to stave off the osteoporosis that can be caused by Letrozole. Did I mention that my charming oncologist said I’d need to take for 10 years? ....Even put it on my prescription and suggested 15 ....by which time he gallantly added I’d be quite an old woman .

What a bedside manner .Dont know if that’s because my cancer was a grade 3....so will have to ask when I get my follow up phone consultation.. . I’ve to get a Dexa scan but BC nurse says about 4 months wait because so many people have been diagnosed.....it’s horrendous !! 

You are so strong being back at work. I only do supply teaching but managed 7 days between 2nd op and Radiotherapy.Hope to be fit enough to manage a few more days soon .

Take care and don’t overtax yourself

Jess

Hi [@mrsmac77]‍ so sorry didn't see that you had replied to me! if you put an '@' symbol in front of kiwirunner then it sends me a notification that you have posted a reply.

How are you feeling at the moment? I know what you mean about the breathlessness - I'm reasonably fit with being back to my running and walking BUT anything with steepness and I am huffing and puffing like crazy. I was away over BH weekend walking some more of the South West Coast Path with my husband (it's a project to walk the whole thing  - we've done just over 400 miles of it over the last four years) and I was really knackered going up steep bits that I used to be able to walk up pretty easiily. Lots of stops on the way up to try and catch my breath. Totally worth it though to be away doing that - such stunning scenery and an escape from day to day drudgery.

Ten years is such a long time to be taking it - poor you. I'm on Anastrozole for five years and today completes my 8th week of taking it. I was getting quite a bit of knee and ankle stiffness a couple of weeks back that started to freak me out but it seems to be settling and being active helps I think so a good idea to keep up your walking.

When is your follow-up consultation? My oncologist is calling me on 9 July.

I'm finding myself having all sorts of strange emotions at the moment. I seem to have coped pretty well with the whole thing but now, a couple of months since finishing radiotherapy I find myself thinking about it a lot and it is constantly sitting on my shoulder making me think about whether it will come back or I get a different type of breast cancer. It is hard to shake the feeling and I feel in a way like I am only really starting to process what I went through as when you are having treatment you are on this conveyor belt that is moving so fast you almost don't have time to do as much processing.

I had my DEXA scan on Weds  - there is an 8-week wait where I am. The staff are doing longer days to get through the Covid backlog by working to 8pm every night but said they are feeling overwhelmed as they are now getting more referrals through than ever before. It will take 6 to 8 weeks for a radiologist to read the scans and send a report to my GP but she mentioned on the day that it looked good on the screen. Fingers crossed. Shame for you re 4 months but hang in there.

[@Jassoscared]‍ how are you getting on? I hope that car of yours has been behaving! How are you feeling on the health front. I remember that you were feeling really tired and having a lot of joint pain on your drug (Letrozole?). Have been thinking of you but been on the site less lately as work has been pretty busy xx

.

Hi [@kiwirunner]‍ 

Had My oncologist review yesterday. I had complained about my appointment ....when oncologist insisted I hadn’t had the oncotype DX test ...but nurse found results...no apologies.

Someone listened and it was a different oncologist ...but oh so nice!. Took the time to explain everything in detail and answered all my queries . Now seems in my area 8 months to wait for Dexa scan!!! Have persisted with my walking and can manage the mile as long as I don’t talk on the uphill bits...Hoping to extend distance but I’ve got my daughter now doing brisk walking because I read that’s much more effective...so we managed in 20mins other day ....No 4 minute mile for us

Your South westcoast path sounds fabulous but you take your fitness seriously. . We only really started during 1st lockdown although I used to walk 5miles regularly before a knee injury about 20 years ago. The excellent news was.   new oncologist thinking I only need to be on Letrozole 5 years so I’m taking his word

I’ve also managed a few days supply teaching which has been wonderful to get some normality but it’s feet up as soon as I get home. Feeling much better all in all . Hope your breathlessness improves ...

My nurse says early days but I’m sure we all worry when we feel something isn’t the way it should be.

Take care and try not to work too hard. 

To anyone else reading....if you’re not happy with one of your team DO complain. We ARE entitled  to the best !!!!!!!

Hi @kiwirunner 

Lovely to hear from you. It’s school holidays in Scotland now so no more work for a while.....mind you probably easier working than being at home as there is so much to do in our relatively new (to us ) home . We moved 16th December and were only beginning to make it habitable when I got diagnosed. Don’t do things by half in our family.

We are hoping to go to Jersey in a couple of weeks but as numbers of cases in Scotland is going through the roof....1 in 150 people ‍♀️Don’t think it’s going to happen. However was REFUSED travel insurance by Tesco who we always use . Really hurt and shocked me .....Any friends who’ve had cancer say it hasn’t affected their cover. Wondering if it’s the hormone therapy as it was refused straight after that answer...Very invasive questioning. Lady was totally embarrassed but Tesco now seems to have a separate underwriter. Just have to keep looking. 

Glad you have a supportive manager.....varies a lot ....but think most people are a lot more aware these days. Hope the Anastrozole is working out ok for you . So far  the Letrozole seems not too bad but I noticed I’ve got no new eyebrow hairs growing....and my hair is really casting as well as skin being very dry . Have you found any of these symptoms with your therapy?

I know side effects vary greatly from person to person but it’s always good to compare . Hope your knees are ok .Dont know if I mentioned I had torn cartilage in both about 10 years ago undiagnosed for about 2....so took a long time to recover. Nowadays I take Turmeric. My husband met 2lovely Indian doctors a few years ago and they said ideal way to take was with warm milk and pepper....tastes better than it sounds....so we take a teaspoon in milk + a capsule. It’s worth trying ...but needs a couple of weeks to work . 

Stay safe and healthy and don’t overdo

Jess xx

​​

@Kiwirunner 

hi 

@Kiwirunner  just realised you'd replied to my messages ages ago  sorry I didn't get a notification and I've been on here from time to time. Yes I agree you don't have time to process fully what's happening to you during your trearments, and yes it all sinks in after treatments of chemotherapy and Radiotherapy stops. And then you do feel.kinda lost in limbo,and do start to worry about cancer coming back. I haven't been great  letrazole still causing muscle and joint pain,ecspecialy in my heels of my feet,knees ,hips  shoulders  and wrists and hands. Not great, and im still not sleeping well. I've developed what i think is trigger thumb, in my right hand,in the morning its ecspecialy bad,I can't bend my thumb,takes me ages to push and massage it and free it. My Lymphedema doesn't help .Plus imy thumb keeps clicking on and off at times so painful and annoying. I've had my first mamagram check,but as I had had four which didn't show up anything  and ultrasound did  I couldn't rest so hsve pushed to have an ultrasound. I've had a letter  and I have appointment to see my surgeon on the 6th September, so not long now hopefully the ultrasound will be done on the day,hopefully put my mind at rest. I have an open access telephone appointment  on the 7th September.   I hope this message finds you well . X

Hi all I just finished day 17 of 20 days of radiation. I didn't need chemo due to low Oncotype score. I've coped quite well with the radiation with the main symptoms being lethargy and tiredness. I've purposely not worked during treatment so as to focus on my mental and physical health for once in my life (I've worked in super stressful jobs for 20 years) and people say I look better than ever. I've managed to exercise almost every day. I go into the hospital on bike or walking (12km) almost every day but I've definitely slowed down. I've not started taking any drugs yet as the oncologist it trying to figure out whether I'm in menopause (I'm 51). I meet him tomorrow to hear the results of my blood tests. E45 cream every day seems to have kept the redness and rash on my breast to a minimum. I'm finding the mental side of things tougher at the moment. What do I want to do with the rest of my life type questions feeling like I'm in limbo. It's happened quickly . I was diagnosed in mid June and so maybe I'm still in shock. I want to seriously improve my work life balance. Realising that is one good thing that has come from cancer. But telling my work that is going to be a challenge!!! All the very best luck. JennycAn

Hi [@mrsmac77]‍  and [@Jassoscared]‍ oh goodness how did I manage to miss your messages? That is over two months ago so I am so sorry for not replying until now! [@mrsmac77]‍ I hope you managed to get away in the end and got your travel insurance sorted. I was a bit nervous about the insurance thing but we are with Staysure Insurance and when we renewed two weeks ago the premium went up about 10% but otherwise they did accept me for cover as a cancer patient. My husband and I went to Majorca together last week - our first week away as as couple in 20 years, now the kids are 19 and 17. Was so wonderful.

Weird to hear about the eyebrow hairs and skin. As you say, everyone is quite different. I'm doing fine on the Anastrozole and joint pain settled down after a couple of initial weeks and now I don't seem to have any side effects after being on it for five months so that is a relief.

[@Jassoscared]‍ it sounds like you've not been so lucky on the medication front :-( which I am really sorry to hear about. Does it feel manageable or a bit overwhelming? I'm in a similar boat re you and seeing your surgeon again. I went back to see mine about four/five weeks ago as I had a new area of firmness in my breast near the second biopsy site (the non cancerous one) and I have had pain in my armpit since July. She has a good rummage and didn't think anything was the matter but did schedule me for an ultrasound on my armpit and a mammogram on the same boob - I am having that on 17 Sept. My armpit is really sore whenever I move my arm or stretch out or up. My lymph nodes weren't checked during  my treatment as my cancer (Tubular Carcimona) rarely moves out of ther breast.

I'm quite stressed out at the moment though as I rang my GP about some other symptoms on Monday and he wants to now see me in the surgery after the initial telephone consultation. I have had a real change in bowel habits in the last three months (diarrhoea) and have started to have some terrible bloatiing and stomach distension - this more recently has now been a permanent thing for about three weeks. It had been coming and going over last three to four months but is now pretty fixed. I look about four to five months pregnant and I can;'t wear a lot of my clothes as I can't do them up around my belly! I am also weeing more than normal so he is concerned about my ovaries and/or bowel and wants me to come in next week as he is away this week. The thought that something else sinister might be going on is not great. I'm keeping it to myself at the moment though until I get a clearer idea of what is going on. So tired of being in the anxious cancer headspace as I'm not a naturally anxious person.

Hi [@jennycan]‍  it sounds like you have coped really well with radiotherapy and the emotions you are going through as incredibly normal. Like you, I have a high perssure job with a lot of responsibility, a team to manage etc  and this sort of life event really makes you question everything and take stock. I am definitely trying to be less stressed at work and not sweat the small stuff so much but it is hard.  I'm a similar age to you (52). My breast surgeon felt I could benefit from talking with the Breast Unit's clinial psychologist so she has referred me. Might be worth looking into? Good luck.

Take care everyone. It's great to have this support (and sorry for always writing such long posts!!)

xx

Hi kiwirunner 

Sorry your having other issues,  me too. I didnt get to see my surgeon, but saw the consultant who first saw me in the bresst clinic, she asked my why I'd come.  I explained everything and told her it was because mamagrams didn't show up anything and I'd had four. And she was the one who had told me it was because my breasts were dense.  She said even though yiur oncologist has agreed you having an ultrasound it's not necessary to have one. She didnt want to do it,and said the reason why is because you've been on Letrazole and letrazole is aging you, your breast tissue is already changing. She showed me my recent mamagrams  that I'd just had for my yearly check, and the one I'd had just before I was diognosed at the breast clinic. She showed me a white area and said this is where the letrazole is breaking your breaet tissue down,see its not as dense now, and as your on it till 2029 ,your breast tissue will go thinner and not be as dense ,your elasticity in your skin is also aging. So ultrasounds are not necessary.  I saud could she just do it to put my mind at rest,but she only did a small bit of my other breast,as I'd been having pain in it. 

I'm also experiencing my right thumb clicking and locking up so I can't bend it in mornings and at night,and sometimes in the day. It's so painfull,I think it is  trigger thumb. I'm going to lymphedema clinic for the first time on 29th September.  My breast care nurse said to try and change my letrazole brand ,it was ok, but im getting worse again pains in heels of feet,shoulder and under my arms, and in my back. She suggested I try ask for femarra,but said it's more expensive,,it may help but might not, ive been taking the Accord brand. So I'll  ask when I next order  my prescription from my gp. 

Irs tough at times, but just got to think of the positives in life.  Take care and hopefully here from you soon. Ps can you private message me on how much your  insurance for your holiday was,just incase I ever decide to go abrroad.Someone I know said her husband waa quoted four thousand pounds ,which seems  realy expensive, more than some holidays would cost. Your holiday sounds great by tge way.