Radiotherapy March 2020

[yorkshire_defector]

Hi Yorks 50

All was fine with planning meeting, was able to position self just fine, strange your exercises sound just like the ones I was given to do post surgery (I wonder which ones you were given? - as with a lot of this cancer lark the levels of inconsistency are still surprising).

Arm & seroma are becoming very marginally less annoying and am now able to ride my bike (very cautiously) which is good as walking every day was becoming a bit samey!

So we're all systems/chests go for first rad session Thurs

Sam

[Yorkshire50]

Hi yorkshire_defector, 

The post  surgery exercises do help. Am hoping you are able to complete with less pain now. I struggled with arm positioning on my planning scan and was referred to physio who after 20 mins with her was able to achieve. She give me some stretching exercises to do every day during rads and I am still doing them now. Basically clasping hands together and stretching above head and holding, reaching affected arm across and over above head and holding, placing hands either side of head and pushing back elbows and holding. She advised this to be done every hour. Each stretch hold for 20secs and then increase to 40 secs in time. I did every 2 or 3 hours. I hope this is helpful. Please stay safe and take care.

[yorkshire_defector]

Hi

Practical question re chemo pose.  If I can do the post surgery exercises (the breastcancernow leaflet ones), all be it with the warm up (quite painful if don't warm up first as had node clearance and nerve cut under upper arm) will I be fine to get into the correct position for rads?

They may need to build in time for my warm up of course! Which means I'll need to take my funky tunes with me....

Ta, Sam

[Yorkshire50]

Hi all hope you are ok.

Purple Lady well done on completing your rads. Is that it for you now?

Jools 123 almost there 4 left if I counted right. 

TKN I am glad lump was only build up of fluid  and nothing more sinister. You must be so relieved.

I have now completed my rads on Monday. Completely worn out was so tired yesterday nearly fell asleep while eating.. unfortunately my heart scan results have resulted in a delay to my 3 weeks transfusions of herceptin  and  perjeta they are now on hold until heart scan repeated after 6 weeks.  I hope it recovers so I can continue as have been told it is more effective if I have full 18 cycles and have only had 8.  I want to do everything possible to prevent  a recurrence and this will be the last active treatment they can give. Was hoping I would be in a position to start planning return to work but that is now delayed due to covid 19.  At least with less hospital appointments  can spend more quality time with family. Hope you are all able to keep safe.

Take care.

[TKN]

Hi all,

I had my ultrasound for the swollen area above my scar, the doctor said its a build up of fluid, he didn't want to drain it as he said it looked a bit angry but to keep an eye on it. It hasn't got any worse so I'm hoping it settles down over time but I am just relieved that's all it is. I think once you've had the cancer diagnosis, your mind goes abit mad!

Hope everyone is coping in these difficult times and staying safe xx

[Yorkshire50]

Hi Jools 123 

Really glad you are coping well with your rads and almost half way through now. Once you get past no8 it seems to go really quickly. Although I am definitely feeling tired since no 7. Hope you continue with minimal or no side effects. Keep safe and take care.

[jools123]

Dodgy maths! I meant 7 down and 8 to go! Blame it on the chemo brain...

[jools123]

Hi everyone,

Hope you are all doing ok.  Great news TKN that you have finished, and Yorkshire50 that you are nearly there.  I'm fine - 6 treatments down and 7 to go.  Just to reassure anyone who is reading this and is just starting their rads...I was completely consumed by anxiety at the thought of going to a busy hospital at this time, but it has been fine.  All non-urgent procedures have been cancelled and all still feels relatively calm.  I'm sure it'll change but at St James's in Leeds, they say they've not quite seen the disruption they were anticipating yet.  I was reassured that if I were to get mild symptoms of COVID, they'd still continue with treatment, which made me feel better.

Lots of love to everyone - hope everyone is coping, although I know it's up and down! 

[Yorkshire50]

Hi all on thread,  

TKN well done on completing your rads. Sorry to hear about the swollen lumpy area. I have now  noticed a reddening of the skin and appears swollen over chest and armpit area but no actual lumps. Still 3 more rads to do. As you say it is probably just scar tissue and ultrasound will hopefully put your mind at ease. 

Jools 123 how are you getting on ? Did you start your rads on Wednesday? Hope you are ok. 

Hope everyone else is coping with current situation as best they can please all keep safe and take care. 

[TKN]

Hi,

Thanks for your reply. I think its quite common but mine didn't appear until well into radiotherapy.

Just abit anxious having to wait again for an appointment. xx

[Shana72]

Hi TKN,

I have swollen lumpy area around my scar and further in .. Was told this was most likely scar tissue and normal...?

Just had my first rad session today 😬, went ok I think!

[TKN]

Hi everyone,

Yesterday I had my final radiotherapy yippee!!  I have been referred for an ultrasound by the doctor as I have a swollen, hard area above my scar, she wants to investigate and find out what it is exactly. Has anyone else had this? Apart from that, I am looking pretty red but not too sore at the moment,

Hope everyone is staying safe xx

[Tili]

Hello lovely ladies out there please keep well and safe in this crazy world.

well done to TKN for getting almost to the end of your treatment, you sound just how I was red/hot and swollen my nipple was like a prune, however almost 3 weeks down the line and feeling very well still at bit red. However was very happy when the treatment was complete. Going forward now

Take care, almost done big hugs Tili xx

[TKN]

Hello everyone,

Hope you are all doing ok in these very challenging times and trying to stay positive, easier said than done I know. I've got two sessions of rads left, they've gone ok but starting to feel that my skin is hot and its abit red, also above my scar where I had a lumpectomy it feels quite swollen and hard, I did mention it on Friday but they didn't seem overly concerned. I'll be glad when my daily hospital visits come to an end, its quite draining and my hospital is quite close to where I live  so for people who have to travel a long way, it must be exhausting.

Hope you're all taking care of yourselves and staying safe. Txx

[Yorkshire50]

Hi everyone on the thread,

Purple Lady glad to hear rads are going well. Sorry to hear about your job.

Chelle56 I know you were ready to return to work seems unfair especially if you can be non clinical and undertake social distancing. I hope you can come to a mutually agreeable solution.

Have completed 9 rads starting to get pain mostly along scar line. Not too bad, tolerable. Skin seems ok.

Should have completed 9th herceptin and perjeta infusion this week. Have 3 monthly heart scans and have had to have my 3 weekly infusion paused as my heart muscle is thinner. Will discuss with consultant best way to proceed. Am only on no. 8 of 18 infusions. Was starting to feel I was almost at the end of active treatment so returning to work soon.

Now have received letter/ text not to leave house for 12 weeks. I feel like this is never ending been off 8 months already. Will talk to HR next week to discuss my situation. Hope everyone is managing to stay safe. Take care.

[Chelle56]

Hi Purple lady

Glad to hear you are doing well with rads 😀

I was also looking forward to going back to work but doctor signed me off for a further 2 weeks at the end of last week as she said I would be more susceptible to virus ( I had complications at start of treatment resulting in cardiac arrest caused by anaphalaxis to blue dye). I feel well and work in admin in nhs so I am going to ask them next week if I can go back but with special conditions like social distancing and working in non clinical. My manager said they will be governed by my doctor, already been off 4 months now climbing the walls 😂😂

Take care and keep smiling x

[purple lady]

Hello Yorkshire50 And Everyone Here.                                                                                                           Just had my 3rd day of rads so far just a little bit tired, I guess that's a combination of taking my tablets as well. Hope that everyone managed to have a reasonable good mothers day. All my lot phoned me. Hope your treatment continues to be alright for you. So this is how it is for me was phoned Saturday by my manager we are closing temporally,I work in retail. At the moment still on sick leave. Though cant be helped we have to protect each other. I have to be honest I did cry cos already done 12 weeks away from work, I was so looking forward to going back.  Speak to you all soon. Please take care Big Hugs Purple LadyXXX 

[jools123]

Hi blackcat

Thank you so much for your lovely reply which makes me feel a lot better about visiting the hospital. I keep phoning with questions and they all sound really calm! Great news about your response to treatment too! And you should be all finished today! Hope you can have a bit of time recovering now. I’m a teacher and have been off work during chemo but am now home-schooling my own kids- it’s only day 1 and they are fed up of me already!!

xxx

[Blackcat]

Hi Jools123,

I’m just finishing my radiotherapy at St James’ in Leeds, with one final session to do tomorrow.  Like you, I have been a bit worried about visiting such a large hospital, particularly as up to early last week the waiting rooms outside the radiotherapy machines were full of people all sitting closely together.  This contrasted with my local (smaller) hospital where I go for my three-weekly herceptin/perjeta infusions, and where as early as ten days ago we all had to fill in a COVID-19 questionnaire at reception, were not allowed to bring anyone into the waiting area or treatment room, and where the cancer care centre has been separated off from the rest of the hospital.  At St James’ there have been new measures introduced since last Wednesday, with chairs separated 2m apart in the waiting rooms, staff continually wiping down equipment and door handles, and patients being asked to wash hands on entering the department, and before/after treatment.  Any extra objects that could carry infection, such as magazines or the baskets where we used to put our clothes in the changing rooms, have been removed.  We were also given a leaflet asking us not to attend if we have a cough or other symptoms.  It feels as safe as it can be in the current circumstances.  As you say, the radiotherapy is important for us in reducing recurrence risk, so the benefits doubtless outweigh the risks of being in the hospital for treatment. The hospital itself is a beautiful facility, with shops upstairs in the main atrium and even a grand piano played by volunteers. 

The actual treatment is fine, and lasts only a few minutes each time.  The radiographers are all lovely, and make you feel at ease.  You get to watch some wonderful photos which people have sent in of Yorkshire while you are in the machine, and also listen to music if you wish.  I have had no side effects from the treatment at all, and am having the radiotherapy while working full-time.  I returned to work 5 weeks ago, after having a mastectomy/ANC in January following chemo (2 x EC and 4 x herceptin/perjeta/docetaxel, to which my tumour had a complete pathological response).  The radiotherapy nurses told me that there may be some side effects such as tiredness or a skin reaction after the treatment ends, but so far, so good.  

All the best for your treatment!

Blackcat xx

[Yorkshire50]

Hi Purple Lady and everyone else on the thread.

I hope you managed to start rads on Thursday and coping well with minimal issues. I have now completed 4. So far ok. 

We are all having to deal with a massive   amount of change in our lives at the moment. If we all look out for each other we will get through this. For all mothers hope you have a Happy  Mother's day. tomorrow. Keep safe and take care.

[jools123]

Thank you so much Yorkshire50! Great to hear from someone at the same hospital. I’m hoping treatment will go ahead next week but will just have to wait and see. 

Hope everything goes well for you too xxx

[Tili]

Jools very well done it will soon be over I was surprised how quickly the time went 

when you get into the swing of it.  It’s two weeks since I completed my treatment. I’m feeling ok a little bit sore, have been using E45 the clinic gave me MED-HONEY this made is very red, however works very well for others

BIG HUGS BRAVY LADY keep us posted keep well and safe xx Tili xx

[Yorkshire50]

Hi Jools123,

It is completely understandable your feeling vulnerable and scared. Daily life is no longer what we are used to even for those without our additional issues. I am currently having radiotherapy at same hospital. In the last 3 days I have noticed a big reduction in people in the hospital.  Everyone is asked to attend alone if possible to reduce numbers in waiting rooms. So far the waiting rooms have been less than half full when I have attended. As soon as you arrive you are asked to wash your hands and there are sinks in every changing room. The staff are really pleasant and reassuring (was also nervous at start) so I hope you are able to complete your rads without too many issues. Keep safe and take care.

[jools123]

Thanks Tili - lovely to have some reassurance. I think I’d be absolutely fine with the radiotherapy ordinarily - it’s just that it’s come at this really difficult time for everyone, and the idea of being in a busy hospital every day over the next few weeks, and therefore increasing my risk of coronavirus when I’m vulnerable from chemo is what is scaring me. Oh well .... onward and upward!! Xxx

[Tili]

Hi Jules,

I was so worried about radiotherapy, however after the first treatment I was very relaxed

the staff were wonderful, every patient was special and always made you feel very welcome. Please tried not to worry easy said than done...you are going to be fine 

good luck BRAVE LADY. Keep us all posted.

big hugs, Tili 👍🧑xx

[jools123]

Thank you! This really helps xx

[Jill1998]

I think hospitals are putting in place procedures to protect vulnerable patients - I don't think radiotherapy makes you vulnerable but having Chemo in last 3 months does - I will paste you a copy of the latest advice .https://breastcancernow.org/about-us/news-personal-stories/i%E2%80%99ve-had-breast-cancer-i%E2%80%99...

[jools123]

Hi everyone,

I’m due to start radiotherapy at St James’s hospital, Leeds, next Wednesday and am freaking out slightly at the idea of being a ‘vulnerable’ patient and visiting a busy hospital. I know I need to do it as I understand the radiotherapy is so useful in preventing recurrence.  Can anyone give me an idea of what it’s like at the moment? I’m sure many of you feel similar to me - I was really pleased about finally finishing chemo, and then was faced with the risks of coronavirus which cut short the celebration a bit! I was pretty chirpy and positive through chemo but the original ‘fear’ has returned and I’m having a hard time getting a handle on my anxiety! Any reassurance gladly welcomed!! 

[Yorkshire50]

Hi Chelle56, 

Thank you for your advice. I am going to go braless as much as possible as you advised. Now 2 done 13 to go so far ok.  hospital now advising to attend alone if possible to reduce no. of people in department. I just want to complete rads asap then only need to attend appointments every 3 weeks. Hope you and family are keeping safe. Take care.

[Chelle56]

Hi Yorkshire 50

Glad to hear the first one went well. If possible try to go braless as much as possible during treatment, I wore strappy cotton tops instead under my clothes instead for the whole of my treatment and the week after. They were nice and soft and didn't rub 😀.

Keep well and I hope you get minimal side effects x

[Yorkshire50]

Hi Tilli, thank you for your kind words. I hope you are keeping well and recovering from any fatigue following rads. Take care.

[Tili]

Very well done, the first one over and down hill from now.

KEEP WELL AND SAFE big hugs brave one xxxxx👍🧒

[Yorkshire50]

Hi everyone,

Have completed my first rad session. staff were really pleasant and reassuring as I was a little nervous. Unfortunately it took a while as had to be positioned twice. I was assured it will be much quicker next time. Due to yesterday's announcement  there was less traffic journey took half the time as compared to planning scan appointment. Drinking plenty and moisturizing as advised. Exercising more but if start to tire will reduce amount. Please keep safe and take care.

[purple lady]

Hi Yorkshire50 You are so brave and strong to go through all of this,  I had my surgery in Jan left breast, WLE +SNB, 1cm  grade 3, invasive ductal carcinoma, ER8, PR6,HER2 negative, my margins clear. I started my tablets 25th Feb so no real side effects just the occasional headache not sure if connected. I am drinking plenty of water also still at times feeling tired, I am trying to follow everything I have been told by my oncology team, but sometimes not always possible. I completely understand the rollercoaster ride of emotions I was fine morning then later just sat there crying, please take care of yourself you brave lady. Lots of Hugs Purple Lady

[Yorkshire50]

Hi Purple Lady,

I had chemo because biopsy showed cancer was her2 positive,  er positive and 6cm. The idea was to shrink the tumour before surgery which it did. Lumpectomy and snb mid December but results showed tumour had fragmented so needed mastectomy(mid January) to make sure all fragments were removed. Now need 15 rads, herceptin/perjeta every 3 weeks for 18 cycles( 8 completed) , hormone therapy ( 5 years) and bisphosphonates ( not sure if spelt right) so still feeling  rollercoaster ride of emotions.  I have just started taking Anastrozole 4 days ago. When did you start ? Having any issues? 

I feel like my life is still on hold for at least another eight months. Taking each step at a time is the way I get through.

[purple lady]

Hi Yorkshire50 Sorry to hear you had to have chemo as well, I was supposed to cos I had a grade 3 cancer but the score came back 15 on the scale this was after my surgery. So just 15 Rads and Anastrozole tablets for 5yrs. Please take care as you say we have gone through a lot, we are strong even though there maybe days that we don't feel it, we can do this. Hope your days are going well for you while you are waiting for your Rads to start. Very Big Hugs Purple Lady X.

[purple lady]

Hi Chelle56 and Tilli Good luck to both of you for the future, thank you for sharing your feelings and experiences with us of your walk if that is the right word to use through your cancer and treatments, you are both very strong ladies.:heart::heart: Big Hugs Purple Lady X                                                                                                               

[Chelle56]

Thanks Tili 😀

Sending love and hugs to you and your family ❤❤

[Tili]

Yorkshire 50 thank you for your good wishes, it means a lot. Take care and hopefully good news for us all.

big hugs, keep us posted xx👍

[Tili]

Chelle, very well done, wishing you health and happiness. Have a lovely evening with the family. Look after yourself and as I always say one day at a time and we will all get there.

love and big hugs from me to you xx🍾🧒 keep us posted 

[Chelle56]

Thanks Yorkshire 50

Ladies I hope all your rads treatment goes as smoothly as mine did

Tilli - glad your rads journey is also over and hope you rang that bell loudly 😀

Have a great weekend and keep smiling xx

[Yorkshire50]

Hi everyone, hope you are all keeping well.

Chelle56 and Tilli congratulations on completing your radiotherapy. Chelle56  I hope you enjoy  We Will Rock You tomorrow. Tilli are you marking the end of your rads with a treat? You have both endured various treatments and can now be proud you have come out the other side.

Hope you have a great weekend. 

Take care

[Yorkshire50]

Hi Purple Lady, glad your planning scan went well and you managed the breathholds. I am thinking of waiting at least 4 weeks before returning to work after rads. I have suffered with fatigue during chemo and  post surgery so I am assuming rads will probably be same. 

So it will be mid May or early June before I return to work. I am also looking forward to work miss everyone and never had so much time off before. We have come through a lot and we should be proud of what we have achieved. We will beat this. Take care.

[purple lady]

Hi Yorkshire50   Thank you for asking and thinking of me. Well cos I am only 4ft.10'' they had to put extra bolsters  under me so I was in the right position. I had 3 goes at deep breathing so that was ok, then my 3 little tattoos. So already for my first Rad appt 19th March, my last one will be on the 8th April. Then I will be back to work after the 20th April, I am so looking forward as I work in a fabric and craft shop. I hope everything goes well for you, will be thinking of you, we can do this. Lot's of love, big hugs. Purple Lady X

[Chelle56]

Hi Yorkshire 50

Glad to hear you will be looking into all options for returning to work, hope you can ease yourself gently back in to it 😀

Yes, I do have plans for end of treatment. I am going to see We Will Rock You at the theatre in Oxford on Saturday with my husband and youngest son, really looking forward to it. Will have a nap in the afternoon to make sure I stay awake 😂😂

I hope all goes well with your treatment.

Take care and keep smiling ❤

[Yorkshire50]

Hi hope your planning scan appointment goes well tomorrow. Will be thinking of you.  Dont worry about breathholds you may not need to . I was told to practice prior to scan but they were able to get clear images without. Well done on starting your hormone tablets I am planning to start mine tomorrow so I have a couple of weeks before rads start on 17th. Every step is one step closer to the end of treatment. Take care.

[Yorkshire50]

HI hope everyone is well.

Chelle56 thanks for the advice I will definitely allow myself time to recover from rads and have a phased return to work. I have spoken to a colleague who had cancer recently and he advised the same. He has also been allowed to temporarily reduce his hours and has a review every few months. I will see if I can have a similar arrangement.  Do you have any plans to mark the end of your radiotherapy? I am having herceptin and perjeta infusions every 3 weeks 10 more cycles to go. So even when rads have finished I will still be a regular at local hospital.

Hope your last couple of rads are ok. Take care.

[Chelle56]

Glad your planning session ended up going well. Hope you get on ok with rads. 

I was told that the side effects of rads peak two weeks after the treament finishes so please keep this in mind when deciding when to go back to work. I am planning on taking 4 weeks off after treatment finishes then going back on a phased return. 

As you said your job is physical it might be worth exploring the option of a return on lighter duties whilst you get back into it

Keep smiling 😀

[Yorkshire50]

Hi all, I had my planning scan today and was also really nervous. The staff were really nice when I struggled with arm positioning was referred to physio. After seeing her tried again and completed scan. Originally was told may need to do breathholds but was told they managed to get everything without. I think it is something to do with positioning of your heart. I now have start date of 17th March. I am also starting to think about returning to work but not till after rads as have fairly physical job. 

Hope everyone copes well  with their appointments this week and have minimal  side effects.

Take care all.

[purple lady]

 Thank you for your kind and thoughtful words. I am more at ease and ready for my pending radiotherapy and anything else that comes my way, bring it on. I think for me it will be getting back to work will be strange as have been down this rabbit hole for a while now I guess I will be looking through the looking glass soon.                                                                        Hope the rest of your treatment goes well for you, Please take care of yourself and thank you again. Lot's of Hugs. Purple Lady X