Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

I wrote a list of questions and took someone with me. Although it was totally expecting them say it was cancer it still knocked me for 6 and I basically just sat there with my ears ringing and didn’t take in any of what was said. As DM had my list of questions she was able to go through them for me and give me the answers when I had calmed down a bit.

MothralovesGojira Thank you for your kind message. So sorry things were difficult on TC but glad its over for you. Mine is over too last one on 27th and I am on to radio next, mine is much less risky as right side. Have a week of it but it is hard to know and does seem an awful lot of treatment.

Am now on holiday and having a lovely time at our stopover pre Cornwall. Just been swimming in the private outdoor pool just us and overlooks beautiful gardens. I am lopsided though, I managed 50 lengths, not sure of size maybe half normal size but I keep sinking a bit on right as no reconstruction. I really want to swim like I used to 120 lengths and beating the men. 😂My steroid poof face is going down, my hair is bob length now, its a bit thin and I miss my old hair but its not too bad for post chemo hair, thanks frozen peas. Will hopefully meet up with Top soon in Cornwall.

Love to everyone and good luck for tomorrows results Great.

I’m 3 weeks on from radiotherapy to right breast. Has anyone else had a reaction like this? Skin was fine the week I finished treatment and the week after. It’s burning and itchy and I’m apprehensive as I’m going to Greece at the weekend. I don’t think I’ll be doing much sun bathing

@Silkierabbit i hope you’re having a lovely relaxing time

Those of you who have had debulking surgery for ovarian cancer, do you have a big tum ! I had two very large tumours removed a year ago and my stomach is still huge, I look 9 months pregnant. Its really getting to me, I cant do much exercise as Ive also got an abdominal hernia from the op. Will dieting shift it. not having too much luck so far.

@Mycatispretty please contact your bc nurse or radiotherapy contact- I had burns post treatment and they prescribed a cream flaminol( or something like it) which is helping massively. But sunblock / cover up I’m afraid

Thanks Mycat Not had radio yet but was told redness was to be expected or a risk at least and also they said after radio no sun if go on holiday shortly after as in cover up or sunblock. Have a lovely time in Greece.

@thereisonlyoneofme my stomach is also huge! My poor front looks like a bottom on back to front. I think I need to diet it off but these Niraparib tablets make me so starving all the time, there is no chance of that. I have a vertical 7 inch cut and I think when they've gone through the muscles, you lose a lot of the tone you once had, not that I was ever toned...

@Mycatispretty Definitely ask for some flaminal forte to clear up that burn. If it is at all weepy then flamazine is a better cream to use.

Definitely need to cover up post treatment, I got my arms badly burnt after just an hour sat outside at a friend's house and now look like I have a farmers tan.

@thereisonlyoneofme I’m only 3 weeks out of debulking but for the first time in months I have a flat tummy again. I’m hoping it’ll stay that way now there (should be) no need to produce the excess fluid.

No results for me today as they’re not back from the lab. I’m so disappointed. Another week in limbo.

@AGreatUsername I've had this happen too, you build yourself up and then have to wait another week. The waiting is awful and you feel so helpless. Hoping the next week passes quickly for you Xx

Fantasea I had the same food cravings on 200mg Niraparib,since going to 100mg they have gone appetite is normal but Im a sucker for chocolate, cakes, cheese, anything beginning with C . Im thinking the same about the muscles, but assume they stitched them up when closing. I darent do anything like sit ups because of the hernia . Im rather looking forward to winter so I can cover up in jumpers and coats

AGreatusername You are not helping !!!

@thereisonlyoneofme and @Fantasea I'm on steroids this week because of an ulcerative colitis flare and so if it doesn't move then it's fair game for eating. I hope to be burning plenty of calories getting up and down to the fridge too, but probably nowhere near the amount I am consuming.

@thereisonlyoneofme yes I'm on the 200mg Niraparib and am starving most of the time! I had my review yesterday and they asked me if I needed any anti-sickness tablets when what I need are appetite suppressants! I tend to wear loose tops in the day and buy a size up for pyjamas.

@MrsPnut burning calories getting up and down to the fridge 😂. I sometimes gather my treats and put them next to me to save me that bother!

I’ve gained weight though god ones why but I think my 9 month pregnant tummy was because of gas. Two weeks ago I decided to reduce my carbs and increase my protein and my tummy is now much smaller. Neither do I march to my own brass band anymore. 😳🙈

Im on about 100gms of carbs per day now and I’m feeling much better.

Sorry, I also have a hernia.

Hi all. I'm finding it completely impossible to catch up properly with the thread, I'm sorry - I reckon at least for the time being I'm not going to be a frequent visitor. But I just read the last few posts about tummies and appetite post debulking surgery, and I have to say my belly has been fairly flat since my op in 2019, apart from a few instances of bloating. Don't think my appetite increased on niraparib, either, although I do eat a lot generally (but seem to have a fast metabolism; weight is pretty stable. Go on, hate me!)

Just wanted to update, in case anyone else has to have a bone marrow biopsy and is dreading it, that mine yesterday was really a breeze! I was very apprehensive about it, having been warned by all and sundry that it's very painful, but it barely hurt at all, and I haven't needed any pain relief since the local anaesthetic wore off.

I was also able to have a useful conversation with one of the doctors and am feeling pretty confident that whatever diagnosis is finally made - seems like they are still expecting it to be myelodysplastic syndrome; all results from the biopsy should be available within a fortnight - the condition can be managed without too much disruption to normal life. Of course I have had this optimistic expectation many times over the past three years and usually been wrong, but hope springs eternal and all that!

@AGreatUsername good luck with results post op. Hope you don't have to wait too much longer. And very good wishes to everyone else here, whatever's going on for you.

After my debulking I had a lovely flat tummy. After steroids and chemo I had definitely eaten a lot and put on weight. About a couple of months after chemo I started to panic because I thought the bloating and acites had returned. My oncologist examined me and politely said that she could feel avoirdupois (aka fat) 😳 Like other posters have said it's difficult to stop eating. Before my CT scan earlier this week i had to stop eating 4 hours before the scan. This seems to have reset my appetite a little and I'm not snacking as mucj. Though I'm trying hard to resist having a slice of cake this evening 🍰

Just called into our local shop and the lady behind the counter quietly asked if I'd had my results and I was happy to say all clear for now.

Big hug to all who are where I was x

HC x

Hi, guys, haven’t posted in a while, and apologies for not acknowledging other posters’ situations, but I’m not in a great place right now and would appreciate some feedback and support. So, to recap: was diagnosed with invasive ductal carcinoma plus a ductal carcinoma in situ, stage 1; grade 2; 12-14mm mass. Had a lumpectomy three weeks ago and the follow-up appointment yesterday. The findings are that it’s actually 27mm and although the margins were clear, they found a (macromats) 10mm spread on one of the sentinel nodes. Obvs, need a lymph node clearance now. This has made it a stage 2. Can’t r see any decent future at the mo and looking at getting all my paperwork in order. Everything seems surreal, as the three consultants I saw were confident the lump histology wouldn’t throw up anything different to the biopsy report. Don’t r know how to live today, so any help would be appreciated.

Try So sorry you are feeling so low, sadly common with cancer but I think those results only a very small percentage would die from over 10 years. The Predict Breast results breast.predict.nhs.uk/tool is what hospital use 10 year figures. Sending love.

On holiday atm, felt quite ill yesterday but hoping better today.

'@Tryhardermum please don't despair, I hardly ever post but lurk on this fab supportive thread and your experience is so similar to mine over 5 years ago. The shock of going post surgery from grade 1 stage 1 IDC to grade 3 stage 2 with macromets in sentinel node was greater than the initial cancer diagnosis for me. However once you get a plan in place it will all feel much more manageable I promise you. This thread is priceless in terms of warmth and knowledgeable support, and you will also find specific breast cancer support on Breast Cancer Now where they have support lines to call and user forums for people with similar diagnoses. Will you be having oncogene type test to determine if you need chemo or not? Also do you have a clinical nurse specialist, they are often fab in terms of dejargonising and putting into context?

@Tryhardermum Another long time lurker here. 12 months ago I was just finishing radiotherapy for a grade 2 stage 3 IDC. It’s certainly scary but once you have a plan in place you’ll feel a lot better. I had to have a second lumpectomy as they didn’t manage clear margins with the first. Oncotype screening said no need for chemo so I had two weeks of intensive radiotherapy instead. Once I started talking to people about it I was amazed at how many others have been down this road.

Hi, Never and Silkie, thank you for your kind and useful words-r appreciated. My Predict has fallen from 96 to 86, which is probs what triggered the huge depression. The surgeon didn’t say much-just that I’ll need lymph clearance and, possibly, chemo. Should I ask about the oncogene type test-it’s not been mentioned. The bc team aren’t v good with providing info or options-just instructions. I have a date in 4 weeks for op-too long away for my liking. I found out today that my surgeon is retiring next week. He could have told me yesterday, which would have given me the opportunity to talk to him about who else to see. Bc nurses aren’t v nice-it takes them weeks to return calls and they don’t listen. Every appointment and conversation ends in some shocking info or news-feel at the of the road, resilience-wise.