Kiwirunner

Hi just read your post asking about Radiotherapy  tiredness, I think it.depends on how your body copes with it. I'm due to start 4 weeks of Radiotherapy  Monday/Friday  on the 10th March and ive recently had the CT scan and tattoo dots  done,well one tattoo dot as I really didn't want any,they were going to.do two,but I said " I could cope with one  so.i was given one at the side ,so it doesn't show,plus a pen mark ( which is covered by tape) in the middle of my chest.  I did ask the question about tiredness, and was told it wouldn't make you feel.that tired on the first week,but tiredness if your going to get it, will start on the second week,as would any of the other side effects if you was to get any. So that's all i know for now .Was also told that if my.skin gets sore, to use a unperfumed body lotion or cream ,so ive orderd some E45 body lotion, which im hoping will help if I.do get sore from.the Radiotherapy. .Hope all goes well.for.us and anyone who is also having Radiotherapy.  X

Hi [@Jassoscared]‍ thanks for your message. Good tip re the E45 cream - thanks for that. Interesting to hear you managed with just one tattoo dot. Was it painful? I have never wanted to have a tattoo so needing those tattoo dots for radiotherapy was news to me until yesterday when they explained it to me. I'm going to go with it as I hope that means everything is lined up well. Just another thing to deal with eh?! New developments on this cancer roller coaster every time. Sending lots of good wishes to you too as you go forward with your radiotherapy xx

Thanks [@Jeet123]‍ for letting me know about your experience. So hard to predict isn't it but glad to hear it has been OK for you. I'm surprised at how tired I have been after the surgery and my breast has started aching today on my first day back at work - I spend so much of the day typing emails and I wonder it it is just having the low level sensation of pulling as a result. Feels weird being back at work particuarly as I only had the cancer confirmed on Friday after two long months of tests - the surgery was treated as the definitive biopsy in the end. So much to catch up on and I'm not in the mood. A colleague emailed and said they hope I had a nice time off. If only they knew! Hope you are doing OK with your whole situation. Take care xx

Hi kiwirunner 

Great that you got your 2nd Covid jab come through early, it just feels a little safer after having the second one done ,and hopefully it is but .Still being cautious  aa we should be.

Having your son home for the 3 weeks must of been so nice , I bet you miss him now.

Hopefully your next prescription  will be fine and you don't get any side effects whe taking it.

The Letrazole is realy harsh, it's not great to take but I was told its the best one to.stop the cancer reoccurring, so even though I have lots of side effects  tired all the time aching and painful muscles and bones dry mouth  itchy skin at night,I'm.trying to stick with.it . It's the tiredness I hate  the most though, as I always did have a few aches and pains from arthritis anyway, I have it in my hands  neck,wrist and knees lol.

I have my dex scan appointment now,its on the 11th June,the appointment came through yesterday. 

I googled about it ,and it said " to not take any Calcium or vitamin tablets for 24hrs before having the bone density scan, as it can give an inaccurate reading,as it can make your bones look better than what they actually are. 

My oncologist has put me on Adcal chewable Calcium and vitamin D tablets, but it didn't say anything in the appointment letter about having to stop taking them, so I'm.glad I found this out myself  so I won't take them the day before, as my appointments at 9.30am.

My son said he will take me but its a bit tight ,as he j he has to.take his daughters to school at 9am,so I might be 5/10 mins late, but hopefully I won't. I was going to ring and tell them, but to be honest I changed my mind,as they probably won't answer the call,and I'm sute people are late sometimes,so hoping I'll be OK  and won't be late.if traffic is OK, it should be to.

Speak soon.xxx

Hi Kiwirunner 

Just finished Radiotherapy....what they call Fast Forward but only 1 week....Not so good ...had immediate reaction Very swollen and nipple was agony.Got to see nurse next day so got zerobase and advice to take anti inflammatory and painkillers. Helped some but burning is sooooo bad it’s waking me at night .

Wondered if anyone else had advice and if anyone felt tingling during actual treatment. Everything you read says ...feel nothing. Swear it wasn’t my imagination as it same tingling... but ramped up ....I’m feeling now

Letrozole causes some side effects but trying to live with it.

Keep up the posting and advice everyone 

Jess

Hi [@mrsmac77]‍ sorry to hear you are having a rough time with the tingling etc. I also did the five-day radiotherapy Forward treatment plan. Like you, I had a reaction from the outset - about four hours after my first treatment my nipple was so sore and my breast was tingling like crazy! The tingling settled down after about  12 hours but over the five weeks since I finished the treatment I have had a range of sensations from a feeling of firecrackers going off in my breast (!) with lots of popping and explosive sensations, to really sharp pains when I leant down to do things like put washing in the machine, or things just being incredibly tender (nipple mainly). Yesterday my teenage daughter gave me a big hug and unfortunately, it made me yelp in pain as it just hurt! Other days I can have a hug with my husband it feels not as sore, but I can go for a run or a walk where my breast aches - but this is not every time. Taking pain relief has helped a bit and over time it has improved so hopefully, it will for you too.

I kind of figure that it is a good thing as it shows our bodies are working hard to repair the damage caused by surgery and radiotherapy, but it is disconcerting. I guess we just need to be patient?

Did you get any fatigue? I was amazed that I didn't as I was fully expecting to be sideswiped by that but do wonder if being fit helped. All I know is that the cancer business is anything but predictable.

How are you getting on with your Letrozole side effects? I'm on Anastrozole which is another aromatase inhibitor. Touchwood, a month in I have dodged side effects so far but I did wake up last night drenched in sweat. Nice. Not! I can live with that but am dreading the idea of any joint pain that may yet kick in. Do you also need to get a bone density scan done to check how strong your bones are? I am waiting on my appt to come through.

[@Jassoscared]‍ hope you are also doing OK. I have been thinking of you - just been rubbish at being on here much lately as work has ramped up and I am mentally tired at the end of each day. Thought I'd grab a moment betweem meetings :-)

Good to hear from you xx

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

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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 [@mrsmac77]‍ I just realised I tagged someone else accidentally when I was replying to you so I better go and find that message as she will be wondering what I was on about!

Anyway - really pleased to hear you had a more successful time of it with a different oncologist. That sounds so good that you were able to get the detailed explanations you wanted and even better that you only have to take the Letrozole for five years - so much better than the thought of 10 or 15 years! Pushing for a better level of care was a good move and good on you for doing so and letting others know about it. 

A mile in 20 mins is good going! That is brisk indeed and great that your daughter is joining you with it. Really nice to hear you are also managing a bit more work too and I totally 'get' what you mean about that providing more normality. My manager is super supportive and is doing a lot to ensure I don't get overloaded with work which I really appreciate. 

Take care too and I hope you don't overdo it either xx

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

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@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 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