Community Champion
Posts: 9,808
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

Kim

 

It will do darling, but I can assure you, being now 2 years post and 22 months post active treatment completed, things do get better and you do get back to some sort of "normal" albeit it a different one as a result of your experience.

 

Do you have a Maggies Centre or McMillan Centre near as they might be able to help with the counselling sessions, also speak to your breast care nurse, I know when I was diagnosed mine said that they could arrange some counselling for me when and if I needed it.  I actually had mine through work, my boss recognised that I was struggling and she sorted it for me.

 

I can totally relate to where you are with regard to your hubby, my partner has MS, is housebound and I am his carer so he was not able to accompany me on any of my appointments etc., I have a wonderful network of friends who stepped in to support me, however when you are caring for someone it put that bit more pressure on you, so please make sure you make time for you as well

 

Helena xxx

Member
Posts: 5
Registered: ‎04-11-2018

Re: November 2018 Radiotherapy

Thank you for your kind words, my husband can’t come with me as he’s needs cardiac rehab twice a week, as he’s just had a stent put in a few weeks after my cancer diagnosis, following chest pain. That’s in our small local hospital, even more family dramas! I think it’s just catching up with me. I think the idea of counselling later on might be sensible, if it’s still offered on the NHS. I think everything is just catching up with me at the moment.
Community Champion
Posts: 9,808
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

Kim

 

I just wanted to send you a big virtual hug because you really need it.

 

It is hard enough contending with the diagnosis and all that imposes on us but you are also trying to come to terms with your mum passing, for which I want to send my condolences to you.

 

I remember when I was having my rads there was a day when I had just had enough of it all, my life being dictated for 5 weeks by this one apt, I told them I didnt want to do it any more, burst into tears, my lovely rads nurse hugged me, gave me a box of tissues and sat talking to me until I was ready to carry on.

 

As much as people are trying to be positive and thinking that they are boosting you, the comments do not help yes you are coping, yes you are doing well, because you have to, but inside you are still trying to make sense of what has happened to you and what you are going through, that will take time.  perhaps in the coming weeks you might consider getting some counselling which might help you to process everything and allow you to grieve for your mum and what has happened to you.  I know I found it very restorative as I was in a safe comforrtable environment with someone who did not know me and I could be honest about the way I was feeling, she was able to make sense of it all for me.

 

You are right about this forum and the ladies on here who can totally relate to what you are going through and feeling.  Come on here whenever you want there will always be someone to help and support you.  You can rant, rave, cry whatever here we are here for you

 

Helena xxx

 

 

 

 

Member
Posts: 5
Registered: ‎04-11-2018

Re: November 2018 Radiotherapy

I’ve had 7 of 20 sessions so far, the last 5 are a breast boost, due to a narrow margin. I’m starting to get tired, and my skin is itchy, so using cream twice a day, and keeping Aloe Vera gel in the fridge. It still feels like a mountain to climb to get to the end. It’s not helped by having a 56 mile round trip every day either, and twice a week I’m having to drive it on my own, as my husband can’t come on those days. My appointment times vary every day, so finding that hard too, some days they’re early mornings, and others late afternoon, so it feels like Radiotherapy totally dominates my life. The staff are all friendly, but lying on a table whilst they move you a little in the right direction, draw pen marks on your breast  whilst they call out measurements, and holding your breath for 20 seconds, just seems de-humanising somehow. I’m struggling with the concept of being a cancer patient anyway, but there’s no denying it when you’re having Radiotherapy. Lying there on your own, on a table, with the disembodied voice of a radiotherapist issuing instructions just seems to reinforce what a lonely experience it all is. Also my Mum died 8 weeks before I was diagnosed, and I haven’t had time to process that yet, and it’s her birthday next week, the first one since I lost her, but I’ll have to go to Radiotherapy, rather than be able to grieve for her as I would like.  I’m fed up of people saying “it’s good they caught it early”, or “you’re coping  so well”! I don’t have a choice about coping, and do what most of us do, put on a brave face, to spare others, when really my heart is breaking. Also Letrozole doesn’t help, I’m having 12-20 hot flushes every day, it’s just a constant reminder of how life has changed. I’m grateful for free treatment, and that modern treatment is very effective. Sorry for the moan, but I don’t think anyone else but fellow patients can fully understand how it feels to cope with the treatment, and the stress it brings.

Member
Posts: 10
Registered: ‎05-03-2018

Re: November 2018 Radiotherapy

Hi Everyone - Had hoped to start my radiotherapy 10 days ago in october  but had my first treatment session this  Thursday 1st November, the 56 days  wait time  made me anxious aka  56 days after 2nd Surgery.

 

Was told 15 sessions , and as always my expectations are never met as I assumed it would be 5, 5 and 5

I accepted as you have no choice  that appointments could be any time of day and and that I would know the times of the following week at the end of the 1st week

So had had two so far but wasnt happy to learn that my week #2 will only be  x 4 session as the hospital cant fit me in - on Friday which means I will have an interuption not of the standard two days over the weekend but 3 - Monday night #3 of 15 is at 7pm which isnt ideal but at least they are fitting me in, the man who gave me my appointment booklet assured me there was no difference to reocurrence rate if treatments are not consecutive and further informed me there had been recent trails yet everything i have read online states to the contrary so Monday morning I will email oncology and ask if they can find another hospital for Friday.

My journey from February to now hasnt been seamless made to feel am on a conveyor belt, after Radiotherapy and who knows how many weeks I assumed it would be 3 but now it will defo be 4 I then start on my endochrine therapy - taxmofen OR Letrozol was always referenced but its #exemestan dreading taking as it will as we know destroy all my oestrogen yet surely the body needs some oestrogen

I so grateful to Breast Cancer Care and will post on here my radiotherapy 13 more sessions to go,

Maybe I am doing my self a disservice pushing for 5 consecutive treatments as having 3 days off could be good but on the other hand it published studies show the reocurrence rate is higher for those who are not compliant ie miss a session even if they make up the session afterwards.

 

Member
Posts: 9
Registered: ‎12-10-2018

Re: November 2018 Radiotherapy

Hi emac, I had to go back for a second CT scan doing the breath holding too. It is a bit daunting knowing I will have to do that for each session. My treatment starts on Wednesday 7th - just want to get going with it now and get it over with. Hope all goes well for you, and everyone else on here 

Member
Posts: 7
Registered: ‎04-04-2018

Re: November 2018 Radiotherapy

Joining this thread as im due to start radiotherapy next week as the last part of my treatment (having had chemo and then surgery). Feel i have had the least preparation about what to expect. Went for my planning CT after seeing the consultant and changing from 3 to 4 weeks of radiotherapy as initially told, and then had a phone call to say they wanted to extend the area being treated to covered (which was already my breast, axilla and neck) to include both chest bone nodes as well. Had to go back to have another CT with breath holding to replan things so i feel a bit stressed. No one has been able to say whether they saw something on the planning CT that is a reason to change the plan or whether the consultant has just decided to change his mind and be over cautious....... Anyway, im glad im a swimmer as i can imagine breath holding for 30 seconds might be hard for some people. 

 

JWD
Member
Posts: 193
Registered: ‎24-07-2018

Re: November 2018 Radiotherapy

Hi fezzy. I've just finished rads and took Anastrazole. I wasn't told to stop have been on anastrazole since June. So far I'm managing with side effects I'm also on calcium and vit d.. side effects of rads are also so far so good.. hope you get on ok with the rest of your treatment. Jo xxx
Member
Posts: 56
Registered: ‎05-09-2018

Re: November 2018 Radiotherapy

Hi ladies I have been on Anastrozole for 9 weeks and just started rads, I was told it is ok to stay on them for radiotherapy but not if  you have chemo, I have been lucky that any se's I have had up to now have been manageable , but I wouldn't want to be coping with bad se's and rads at the same time, best wishes to all starting rads this month, all I can say is its not as bad as I imagined and the staff are lovely and always willing to answer questions, sorry your experience has not been so good Charlie.  Fezzy x

Member
Posts: 6
Registered: ‎13-10-2018

Re: November 2018 Radiotherapy

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Member
Posts: 143
Registered: ‎09-05-2018

Re: November 2018 Radiotherapy

Mavit, I started to take my Tamoxifen 3 weeks before rads started. My onc never even mentioned waiting till after rads. I thought that if I have to be on them for 10 years, I best crack on!!!
Member
Posts: 143
Registered: ‎09-05-2018

Re: November 2018 Radiotherapy

Fezzy, I was also told about the cream acting as a barrier. My sessions were at 6 every evening so I just made sure I didn't put any cream on after 2. And even then I used a wet wipe just before going in, just to freshen up. Putting the cream on earlier gave it time to sink in. I'm still using Aveeno twice a day although I used Aloe Vera cream and gel during treatment.
My boyfriend drove me to all my appointments so even though it was an hour each way, I could just sit back and let him carry on!!!
There were times when I stressed about being late and missing my slot, as we had to hit the M25 at 5:30pm (!!!!!!) but I just called the unit if I could see us being late and they just swap me with someone who was already there. That said, my unit had 12 machines, not everyone in use at that time of the evening, so there was a bit of leeway and there were times I got bumped up the waiting list just to get us all through and give the staff an early night!!!!!
Community Champion
Posts: 9,808
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

mavit

 

My Oncologist said I could start my tamoxifen before or after my rads he said it would not make any difference, I started them a month before I started rads. 

 

Honestly it is the fear of the unknown that makes us nervous and as always with the real thing it is never as bad as we imagine it to be.  The first apt will be longer than the rest of them as they have to go through all the measurements and information from your oncologist, plus if it is like mine I had a talk with a rads nurse first who explained what would happen etc., so in all it was about 30 minutes.  After that the actuall sessions themselves were only 10/15 mins from undressing and getting dressed again.

 

Hope this helps

 

Helena xxx

Member
Posts: 20
Registered: ‎01-11-2018

Re: November 2018 Radiotherapy

Mavit1,
There was an attempted aspiration of it a week prior to surgery, but it was too thick.
Measured 7x5cm on ultrasound.
It became infected 3 days later on a Sunday typically so got antibiotics from the GP on the Monday.
My breast care nurse got me an appointment for 2 days later but it opened up the scar before i got there.
It’s my breast only and I think I’ve got another 2 weeks of dressing changes at least before it closes up.
Member
Posts: 45
Registered: ‎05-06-2018

Re: November 2018 Radiotherapy

Good morning everyone

I still have to wait another week before starting my Rads. Seems the waiting is making me very nervous.

Did your radiologist tell you that you could continue taking hormonal tablets such as tamoxifen etc during Rads ? Presumably this will not affect it ?

Sending you all hugs x
Member
Posts: 45
Registered: ‎05-06-2018

Re: November 2018 Radiotherapy

Hi Katie poo

Haematonas are very unpleasant. was this underarm or in the breast area ?

I had WLE and SNB and developed one under arm where they removed my sentinel nodes and the breast care nurses tried to drain it but then realized they couldn’t as blood . Saw a doctor and he told me to leave it as it would go away in its own and lucky enough it did just that so didn’t need any surgical intervention . It did take a good 8 weeks for it to heal . Contracted mine 10 days after surgery . It’s so painful and uncomfortable. Hope it heals quickly for you.
I understand why need to postpone the Rads as you need to be able to raise your arm above your head whilst undergoing Rads and can imagine it’s very sore for you now .

It will get better - sending you hugs x
Member
Posts: 45
Registered: ‎05-06-2018

Re: November 2018 Radiotherapy

Hi Fazzy,

I see you have started and wish you all the best .
The radiologist told he that I could apply a water based cream beforehand after showering providing it has been applied on lightly .

She did also say not too worry too much over it as they would ensure that the area is cleaned off ?

Hope rest of the sessions go ok for you x


Member
Posts: 20
Registered: ‎01-11-2018

Re: November 2018 Radiotherapy

I was supposed to start rads on 26th October, but it’s been delayed after I developed an infected haematoma 3 weeks post WLE. Surgically removed on 19th October. Wound still oozing and need dressing changes every other day.
Has anyone else had this type of situation?
I’m lucky in a way that is was an intermediate grade non-invasive DCIS, so I’ve been assured the delay won’t cause any harm.
Member
Posts: 56
Registered: ‎05-09-2018

Re: November 2018 Radiotherapy

hi ladies hope you are all getting on ok. It was day two of rads today, has anyone else been told its best not to use cream just before treatment as it can act like a second skin and rads might not be as effective. Early days yet but not feeling any effects yet just maybe a bit more tired, only 18 more to go ....   Fezzy x

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Community Champion
Posts: 9,808
Registered: ‎16-11-2016

Re: November 2018 Radiotherapy

Jules

 

Oh I remember that moment very well.  I had gone to my apt, they were running late and I was in a bad mood, the nurse asked me how I was to which I burst out crying and said I did not want to do it any more, that I was fed up with this apt controlling my life every day, she just put her arms around me gave me a hug and a box of tissues, after a few minutes we got on with it.

 

I can honestly say the worst part of it was the going back and forward to the hospital every day, which did not help if they were running behind, but as you say you are halfway there now so it will not be long before you are finished.

 

Sending you hugs

 

helena xxx