Emotional meltdown at the end of the treatment road-has anyone else experienced this?

Going through breast cancer treatment Radiotherapy
1

Hi ladies/gents,

I’ve had 2 lumpectomies and am now on Day 18/20 of my radiotherapy; I finish next week and that will be it for me re-treatment. I had been “strong” all through my appointments, and 2 lumpectomies, but over the last 3 days I’ve been in tears much of the day (when I haven’t been working). Even lying on the radiotherapy table today and yesterday…tears streaming down my face. It has hit me hard. That the “journey” is coming to an end, and what life will look like post-breast cancer. There have been other factors that are no doubt contributing to my lowered mood, i.e., I was in pretty regular contact with my breast cancer nurse who was attached to my surgeon’s department (for 19 months) but since my radiotherapy started, I’ve not heard from that nurse, and instead have been assigned another nurse (from the radiotherapy team). Not all nurses are created equal:) and I miss the nurse who I got to know well. 

I also find it odd that when I asked the radiotherapy oncologist (the one involved in overseeing my radiotherapy) who will be monitoring me, etc. he said that my surgeon will and that he will be overseeing the bone density scans and my letrozole medication. He has asked me who else was involved in my treatment, to which I replied “Dr. X”-the oncologist based in the same hospital as my surgeon and the one who arranged the Oncotype Dx test, & started me on Letrozole, etc. If I’m honest, it feels like my original “team” has abandoned me:). I was diagnosed in August 2018 and have been under that team all along but now that I’ve started radiotherapy, I seem to have a new team looking after me. I don’t know if the cancer teams realise that patients value more than just their knowledge and expertise-we value the connection, the relationships that we form with them. And as much as the new breast cancer nurse is doing her best to be helpful and nice-I don’t know her in the same way that I know my other nurse & it just doesn’t feel the same.     

I’m also aware that COVID19 is not helping the situation in that I can’t celebrate the end of treatment face to face with my parents (who live in another country). 

Has anyone else experienced low mood towards the end of their treatment and have you experienced a change-over of “keyworkers” and felt dissatisfied? I emailed my original BC nurse on Tues with a specific question and haven’t heard back and that just magnifies my feelings of abandonment and sadness. It feels really awful at the minute. 

Without a doubt, this whole experience has had more of an emotional impact on me than physical. 

It’s hard to explain the feelings to my parents-they assume that once my radiotherapy is over I’ll be able to “get on with life” and “get back to normal” and somehow I don’t agree. I feel I am losing the ability to control my emotions, whereas for the last 21 months I was doing so well doing just that!

I’m interested in hearing about your experiences… 
xxxx

Update as of June 11, 2020: I finally heard back from my original breast cancer nurse (she was off when I first contacted her)-she was incredibly sympathetic to how I was feeling and suggested we have a phone call-we did, and I felt so much better for speaking with her. 

   

2

It’s tough . I finished radiotherapy last September signed off by oncologist November mammogram clear Jan but 9 more years of Letrozole and annual check-ups . I have mild lymphodoema ongoing joint pain due to meds and of course at times the ‘what if ‘ blues. But I am alive . … you will have good days and bad days just keep going . i am told in time it does get easier at least we have time to find out hopefully. Take care x 

3 Likes
3

Hi Marla

It is a bit of an open road ahead once you know you’ve had your last appointment but that doesn’t mean you are abandoned. You will be monitored on Letrozole and you should be able to contact your original breast care nurse, including for emotional support. Mine told me that she was in contact with patients for many years and certainly I emailed her when I hit a crisis this January and got an invaluable response. I also left a message yesterday teatime and had a return phone call 8.30 this morning - and three hours later, one of my oncologists rang me for a discussion of what’s bugging me (a prolonged side effect).

They work closely as a team but have their specialisms. I started with the head honcho who dealt with my diagnosis and treatment plan (and my phobias), then saw another oncologist who specialised in the chemos, (plus a whole range when I was hospitalised), then saw the one who specialised in radiotherapy and hormone therapy. The last one was the least successful communicator but the nurse assured me today I could speak to any oncologist I chose - there’s no protocol. I too was diagnosed in 2018, in September, and finished my treatment last June. Yet here I am, still able to discuss my worries with my breast care nurse and with the oncologist of my choice.

Obviously the best situation will be one where you don’t feel the need to consult them but, if you do, they are still there for you once the treatment is over. I think it’s normal to feel abandoned - no more routine of hospital, hospital, hospital - but there are positives. There’s a brilliant article which one of the nurses here posted. I’ve read it many times and found the author (who happens to be based at my hospital trust) has got it spot on. Give it a read if you can: workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

This is a difficult time anyway but doubly difficult for you. However, you’ve completed your treatments (apart from HT) and you can move on with confidence that you’re cancer-free - once you’re ready. You might like to investigate what support services the hospital offers - Macmillan runs an excellent service at my hospital, with counselling, alternative therapies and group activities like the Moving Forward course (a bit too soon for you I suspect). We also have a Maggie’s Centre and there’s a Haven in the city centre. They all provide free and very experienced emotional support. I only found out about them on the last day of my radiotherapy - so maybe here’s a good pretext for contacting your original nurse, to ask about support services? 

All the best in looking forwards, not backwards,

Jan x

4

Hi

Reading this spells out how I feel and I totally get it.

I am 7 months in, chemo and surgery done (all in covid except for the first 2 chemos) and radiotherapy left. The chemo killed the tumour and after surgery results were clear but after surgery, emotions like you hit hard.

After chemo finished, it was like I lost a lifeline, no picc care, bloods etc and regular appointments. Yep glad chemo done but that family had left me.

After surgery once drain out and dressings off, nothing until I see my oncologist.

I had heard this happens from others so I reached out to this charity and have had helpful chats with one of the nurses and a someone like me volunteer.

Friends feel I should be jumping for joy, I feel I need to work out what has happened.

I hope my sharing has helped, yours has.

Take carexxx

xxxxx

5

Hello Marla,

I can really sympathise with you and what you are going through, I have done nothing but cry, you sort of feel alone and confused as to like well what do I do now, also who is going to be there for me, even though I have my family’s support it just I sent the same as you have with your doctors or nurses, I have felt lost with my nurse being on holiday , and I have just bottled things up then I would just burst out in tears.

ive had loads of problems with getting my radiotherapy that it has come to me just giving up as I feel my team do not seem to understand or want to know much about my other health conditions that I have, I just don’t know who to turn to like yourself when treatment comes to an end and when you ring that bell 3 times, I know I’m not emotional ready for that bit of my journey, and with everything going on with the COVID restrictions your on your own now what no family is allowed with you when you go for treatment no matter which journey you are going through wether it be the start middle or the end of treatment we have all really been alone going through all Cancer treatments I am tired and feel drained and very very alone so this is why I also joined this forum as I have no where else to go to chat to support each other as we are all on the same journey yet it feels strange and a bit weird that I’m chatting to people I don’t even know or have never met yet we have poured our hearts and our worries and concerns out on here our only place where people understand so take a deep breath when you eventually ring that bell cause I know I will break down in tears on leaving on my own alone which is so sad to me but yet I have to be strong as this is a journey that will live with you forever and will never leave our minds as it will lurk there then pop up and you will think a year again I had all of this trauma to go through and yes I will cry , but we must try and remain strong and I’m also curious like yourself who what where how do we cope with life itself and who to turn to in an hour of need scared of being wanting to talk to someone sorry I have just gone on and on but at least we all understand each other.

take care and try to be strong Catt57