Just finished radiotherapy but feel overwhelmed

[cbear22]

Hi everyone

This is my first post here and hoping for a little guidance/advice.

I was diagnosed in May with grade 3, ER+ HER2- breast cancer. Lymph node removal showed no spread, so lumpectomy and radiotherapy, along with taking Tamoxifen (oncotype result 17, so no chemo).

Haven't felt too bad physically, apart from severe cording following surgery, which is now almost cleared up and finished my radiotherapy yesterday.

What I have felt though is a bit abandoned since my op. I don't want to play the whole 'woe is me' card, but I haven't seen anyone face to face since the day of my op. I know this is mainly due to Covid, but no post-op physical follow up. We had to remove the dressings (well my husband did) to tell them over the phone how it looked, wasn't healed properly so had to request more dressings. No physio for my cording, again a phonecall (which they forgot to arrange) with a physio. Never met my oncologist, only 2 phone calls to tell me what treatment I was to have and now I've finished radiotherapy what next? I was told I would have a follow up call in 6-8 weeks either with onc or my gp....is that it now then? Is there usually a scan or something to confirm whether you are now clear or not?

I'm also concerned about the future in that no one has seen my breast since my op...how do I know what is now 'normal' as it feels completely different.

Sorry, just feel that communication and level of care I've received post-op hasn't been great and am wondering 'what now'. Just worried really and finding it hard to now just go back to life as it was.

Thank you for listening x

[Happyrosie]

Hello cbear22, And welcome.

I had a full mastectomy and was followed up (more for less) properly and this was six years ago. So my experience does not mirror yours BUT Covid has changed everything BUT again you must not be left to drift.

There is or was six years ago, no scan to see if you are clear as far as I can recall. but you should have a double Mammogram each year for say five years.

I think it’s likely that you’ve fallen through a crack in the floorboards and got missed - this happened to me several times between diagnosis and the end of my radiotherapy with chemotherapy in between. The medical aspect is wonderful, the admin is woeful.

Were you given a breast cancer nurse contact? If so, she is the one to advise you, If not, get on the phone to your GP surgery

Do keep us posted, we are here to sympathise and help if we can.

[cbear22 in reply to Happyrosie]

Hello and thank you so much for the guidance. The communication and care leading up to op was great, but not since the op. I think the fact that also been working from home since March and had to self isolate for a month too hasn't helped. I do have a breast care nurse number, so will give them a call soon. Just wondering if anyone else who has been diagnosed during lockdown has had a similar experience with not being seen or advised next steps? Thanks for your support.

[EMA55]

Hi cbear22

Your experience is very similar to mine including cording (operation in March and finished radio end May). Not physically seeing anyone has been really weird and I too wondered whether what I was left with was normal. My oncology team arranged the follow up phone call. I mentioned boiling hot flushes and inability to sleep so was referred to another team for help with that. That happened quickly and also took place by phone. Onc. team have arranged a subsequent follow-up call for next week. No mention of scans or anything else but I wasn't expecting anything other than an annual mammogram one year on. As I'm a bit further on than you I can add that everything looks much better now and the scars are much less noticeable - I'm impressed! The surgery sites are starting to feel much better too, less lumpy and hard so things still change a lot. My skin went a bit crazy when radio finished which surprised me - covered in mini spots - delighful! They cleared up in about 2 weeks just in case that's useful. You could call your bcn to ensure your onc team are making your follow up call. Better than a GP at this stage I'd say.

Take care. x

[cbear22 in reply to EMA55]

Thank you so much for the advice, I really appreciate it and reassuring to hear that I'm not alone. Glad to hear you're doing much better x

[Corfu7]

Hello

I had stage 3 Her2 positive in Both breasts. Diagnosed a year ago end of this month. Because I had a 13cm growth in left breast and 4 smaller ones in right breast. I was in neojuvent chemo from October til mid feb. I was supposed to have double mastectomy in the March then we went into lockdown. So I had my left breast removed on 1st April now known as April boob day. I was done as a day patient which I must admit was very scary. They removed my breast and lymph nodes. I had a special negative pressure dressing on which is held in place by a little battery pack. My scar is about 13 inches long. My gp nurse had to remove this but didn’t have correct dressings to use. So I was patched up with other stuff. To say it is a horrible feeling to be left alone is an understatement. Although very sore I was healing fine. But back of my mind is always what if... in may I had 20 sessions of 30 min radiotherapy. I had horrific burns so on my chest and under my arm. The pain was incredible and the cream did not help. A few weeks later I was back on chemo to keep my other breast in check til I get next op next year. This chemo goes on til end of January.

I have only had 3 phone calls since operation and feel like I’m hanging in thin air. I’m like you I don’t know what I’m supposed to be feeling like or how I’m supposed to feel. I’m becoming a bit paranoid about how the breast removal area is. Do I phone breast nurse or go to gp?

I hope you start to feel a bit better as there are a few of us about who are really unsure as to what if anything we should or could do.

Jax xx

[Ratbagtazbag]

Hi! My diagnosis and treatment is very similar to yours. I had my surgery on the day of lockdown and yes I haven’t seen anyone face to face really. I got my treatment summary letter through a couple of weeks ago and a letter to say I have a phone call with the breast care nurses at the end of Sept.

I think if you are concerned about anything then speak to breast care nurses and they will see you face to face if it’s something that they need to see. I felt like I had to catch up emotionally from it after my treatment but also felt a bit abandoned. That’s when I looked online to charities and support groups. Breast cancer Haven and Penny Brohn have had some excellent zoom sessions. Happy to chat more if it’s useful. I am struggling still with Tamoxifen, especially with the heat we’ve been having! Take care. X x x

[Jhnard]

Your experience is not much different then mine (2014) in which I had lumpectomy and sentinal lope lymphectomy with SAVI device radiation. Placed on anastrozole (aromatase inhibitor) because I was 58 yr old post menopause and not tamoxifen. Follow up was in 6 wk and then 6mo for mammogram and checkup. But I had access to breast navigator (nurse) for any concerns. No scans etc. Just mammograms and exams annually.

[KylieLM]

I felt a bit the same after my radiation ended in feb. Not because of lockdown though. For me I think it was more that my life was put on hold for a while of intensive activity, a whole lot of new stuff (some of it quite scary), operations, hospitals, radiation and then suddenly it was....off you go! It was like stepping into a glass box for a few months while the world went on around you and then stepping back out. You have changed considerably but nothing else has and now we are expected to just step straight back into things.

Its a surreal experience!!!

[Rufusmom in reply to KylieLM]

I love the way you put it, "you have changed considerably, but nothing else has." And surreal, yes, that's exactly the feeling, isn't it? You go through this chaotic swirl of activity and then, hmmm, all quiet and everything's back to "normal". I'm coming up on my 1-year post-surgery mammogram (Stage 1a ER+/HER2-) and have been surprised how much anxiety it's bringing up. People ask me all the time how I'm doing, and I feel great, but also realize how the heck do I know what's going on in my cells. Such a weird feeling. And, as you say, when you're first diagnosed, there's a lot of support but pretty much crickets after treatment. AAR, thank you for sharing your experience and feelings. It helps to know that other people share the same fears and frustrations, and, yes, triumphs as well!

[KylieLM in reply to Rufusmom]

I hear you! I'm coming up one year too! Unfortunately they have found a completely different tumor in one of my adrenals but all the scans and blood tests have come back inconclusive as to whether it's cancer. I'm waiting to hear from the specialist team about surgery so they can remove and biopsy it. Grrrrrr....the waiting again.

The upside is two-fold though. Firstly I was having horrible side effects on Tamoxifen and this new oncologist is happy to support me coming off it and helping me manage the risk with lifestyle. And secondly he gave me a PET Scan and the breasts and the rest of my body is all clear!! Woohoo!!! I'm due for a mammogram next month but am feeling confident that it's just a formality.

[waveylines]

Sending you all the biggest of hugs. I was diagnosed with stage 3a bc, grade 3, HER+, masectomy lymph nodes removed, FECD 6 rounds, Herceptin one year, rads 15rounds, DIEP and breast uplift and am still on Exasmastane. It was all happened well before lockdown but I well remember the end of rads when all involvement stopped apart from annual check up. Last one next week. It felt weird and a bit scary. It has taken me a while to recover but you do though am on heart meds due to cancer treatment damage but am well and recovered. And lucky as still in remission.

Having to do cancer treatment during lockdown must have been awful and lonely. Id contact your Oncologists secretary and ask if you may speak to him/her for a catch up as you are concerned. In truth I never found my breast care nurse helpful and she didnt even return my messages.......other people in other areas had helpful/supportive ones so you maybe lucky.

I also joined breastcancercares online support group. That was good. Still in contact with three others who went through treatment like me but live in different parts of the country. We set up a whats app group and meet occassionally even five years on. Worth looking at because theres nothing like knowing others in the same boat as yourself. Take care.

[Loulou669]

Hi MacMillan care has tons of advice , phone them , they helped me xx

[123048]

I’m so sorry you have been left like this, it’s disgraceful. You should have been given a breast cancer nurse that you can contact anytime. I suggest you phone the hospital that removed your lymph nodes to seek advice. Failing that, Macmillan nurses can be a great source of knowledge and comfort. After the surgery, you will have some nerve damage which will probably remain numb. I had axillary clearance, 2 nodes active, and unfortunately I have lymphodema of the left breast.

Be kind to yourself and I hope you heal well.

Helen x

[RuthJ]

Hi I had same treatment as you in 2017/2018 I had a chest X-ray after but this was to check if any damage to my heart nothing else then had a follow up with oncologist about 6 months after treatment to check breast they have to leave it that long until you heal. You should have your yearly mammogram around the date of your surgery. Hope this puts your mind at rest but any fears phone you BC nurse xx