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.

@thereisonlyoneofme I really hear you on the unremitting worry of it all, that's me. Some of the time, I can push it away but it never really leaves me and it's just exhausting. I'm really hoping you can restart on the Niraparib.

@foofooyeah so sorry you find yourself back on the thread and hope they can get your infection under control very soon.

Thanks for your kind thoughts. I think reality kicked in today, it’s all been a bit surreal up to now.

Hi, Silkie, sorry for going on about the Onco test, but can I ask if you had it as part of a trial, as my bc team are adamant that it was never available in England for nodal involvement patients unless as part of a trial. Also, which trust was it-you don’t have to answer that, if you’d rather not give that info. Many thanks.

Hi Try No mine was not part of a trial, I was offered the optima trial but chose not to do that as only 50% of that I think get offered the oncotype test and they also don't give you the result. Plus my oncologist said something about scores up to 60 was no chemo and mine was 41 and high risk, chemo recommended. It was Prosigna they do which is a UK version of oncotype, think optima trial uses that as well though not certain. Mine was put through as a special case they said. I think it was MDT that signed it off but was oncologist who told me she was letting it through as a special case. I think its about £2kish. I am at Addenbrookes in Cambridgeshire. I am not sure exactly what grounds they put it through it, but chemo was recommended 6% 10 year benefit on Predict and I was terrified of doing chemo and my cancers were both lobular and there is some academic debate whether there is a benefit of chemo for lobular and some research studies have found no benefit but others have found a benefit. I had to promise I would do chemotherapy if it came out high risk for the oncologist to sign off. Though when it did she actually still gave me the choice.

There they just use the oncotype afaik to decide if chemo or no chemo and low risk I think they take chemo option away. Its 3% to 5% benefit goes to oncotype normally there, I am not sure about nodes. I had 1 node positive and 46mm lobular and 17mm lobular. My oncologist kept with the shorter regime of 4 cycles, well we did 12 weekly Pax. She did say it is slightly controversial amongst oncologists but in her opinion it was enough. I think the longer regimes do have slightly higher success rates but like in my case I think it adds something like 6 months to life expectancy but more side effects and 6 weeks of that 6 months will be in chemo. In my case it also took 6 weeks away now being with kids for in hopefully 20-30 years time or so if no reoccurrence.

Just checked my letters at it was 44 my score not 41. And letters seem to say it was to help me decide whether to do chemo or not.

Hi @foofooyeah I am so very sorry you find yourself on here again. It’s also my second go round after breast cancer in 2011. I have mets in pleura, lungs and on sternum. It is very very surreal at first. Then it’s terrifying. Then you get your treatment plan and on you go. And it remains … terrifying. Some good days (mentally) now 5 months on from diagnosis but I’m on anti depressants & have prescription for anti anxiety meds. Anyway. You’re not alone.

I’ve done 12 paclitaxel IV chemo and now having a two week break. One week break was scheduled but I’ve taken another as I’ve had horrible chesty cold all week & feel like absolute hell. I know the chemo would have taken me down. Last time had chest infection ended up back in A&E & then hospitalised for 3 days in what I believe to be The World’s Worst Hospital™️.

But hopefully back at it for two more chemos then to discuss next steps with oncologist. There are plenty of treatments out there. When you’re ready there’s a Facebook support group called stage 4 deserves more but I would say unless you’re desperate to find out info just yet give it a miss until you feel mentally able. It’s good for researching stuff or reaching out (it’s a charity too & you can get lovely box of goodies if you Google it … great consolation prize huh… well worth it) but it can be overwhelming & I find it can send me into a negative space as lots of posts. I like the neatness of this thread really. Macmillan cancer support line great if you feel really overwhelmed & want to talk to anyone in meantime while in that awful waiting period. But you probably knew that

Hi, Silkie, thank you for all the info and yr hospital name. It will be good to be specific with the oncologist, as I’m sure she thought I was making it up! I’m so ticked off with my hospital and the crap treatment that I’ve asked my GP to refer me to another hospital for a second opinion. It was a huge decision for me, as it will delay my chemo, obvs, but it’s been at the back of my mind for a while. I was also concerned that I should have had a mastectomy instead of a lumpectomy cos of the pattern of my tumour-spiculate (spidery). I have a friend who has the same spiculate mass and her surgeon said the spidery pattern means it can spread anywhere so best to take away the whole breast-it will be reassuring to get another view. I appreciate I could end up with a worse scenario but better to know.

Try I did find these NICE guidelines to the testing and it is talking about 3% to 5% risk on Predict and lymph node negative www.nice.org.uk/guidance/dg34/chapter/1-Recommendations. Not an expert in NICE guidelines but it could be true its never normally funded but certainly my hospital could make exceptions and put things through as special cases.

I have lobular which does form as a spiders web and I went for mastectomy, they said initially they could offer lumpectomy or mastectomy and I queried the lumpectomy option as my cancer felt about 5cms cubed and I'm not that big so it felt like most of my breast was cancer. The surgeon then asked if he could check me again, he did and said he could feel a second area with cancer in which he said must have grown since the scan. I pointed out scan was only a week ago then he went to check the scans and saw they had missed it. He came back and said they might still be able to lumpectomy by the skin of their teeth but would need a meeting to decide. I did not want to take the chance and also the MRI had came back saying cancer in nipple, cancer appears to be in chest wall do a further CT, stage 3 characteristics. So I went with mastectomy and that did get it out and they thought not in nipple or chest wall after that but there were 2 cancers and 1 lymph node involved despite scans being clear for lymph node. It is hard to know though but I think its important to feel informed and that you are making the best choice you can. The smaller surgery is better cosmetically and if my cancer had been smaller it would have been a good option. I think chemo should also destroy anything. If they got clear margins and saw no evidence of disease it should be OK but worth checking anything concerned about with second hospital.

Hope you are feeling better Mowly

should say for node positive by funding

Hi there @foofooyeah and welcome back although I’m quite sure you would rather be elsewhere. I was just beginning to wean myself off this thread as I was finishing treatment for BC until last week when I found a new lump on the opposite side to my cancer. Now I am lurking in that awful state of suspense waiting to find out my fate. I veer between thinking it is all a mistake to being convinced it’s a secondary and I’m riddled with cancer. Bizarrely I’m really well and fit and stepping up my exercise. I cycled forty miles yesterday.
It’s an odd thing but I feel really ashamed. I know that’s not rational but there we go. Roll on Wednesday so I can understand what the hell is going on.
Sending best wishes to you and to everybody for the week.
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TopoftheCliff Awful to find a lump. Really hope it turns out to be nothing.

mowly you sound very similar to me. Still battling this infection. Two weeks in hospital now. I’m getting despondent and feeling helpless.
thanks for the Stage4 mention, yes I’m not sure if I am in the right place for it at the moment as I don’t have a treatment plan, but would like to join later.

I can’t remember how to BOLD names!

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I remember feeling really ashamed after my diagnosis I felt that my body had let me down and was weak because it had let it self get cancer. I understand that feeling and it's one of the many things about cancer that sucks.
I now have a grudging respect for my body for surviving treatment although I'm sure if I was facing a second diagnosis I would be overwhelmed by those feelings again. So I understand how you feel and don't think it's odd at all x

@Top I remember feeling ashamed of myself that I had 'let myself' get into this dreadful state of health. I felt ashamed of my body and of me as a person. I remember having my first ascitic drain and biopsy - my abdomen was exposed and they raised the bed and it was huge and wobbling, it was awful. I still feel shame now, it's lessened but it hasn't gone away. It's just another kicking when you're already down, I do understand. I hope that on Wednesday you'll have some information so at least you know what you're dealing with Xxx.

I get the results from my first post surgery CT tomorrow. If they’re ready in time. I am absolutely frozen with fear. What if it shows new things? What if it shows more lymph nodes affected somewhere else. My rational mind is saying it’s only 10 weeks since surgery, the main source of oestrogen is gone, it wouldn’t grow THAT fast being low grade, would it?

No real replies needed, just had to get some of my panic out. I’m trying to stay busy in RL to avoid the fear but the inside of my mind is a bleak and scary place.

Well Im furious with my GP. I paid for an urgent echocardiogram last week to see if I could continue with my cancer meds, (been off them 2 weeks ) because I would have had to wait ages for an NHS one. It was sent to my GP last Tuesday. I rang today to see if they had actually received it, yes they had, and it hadnt even been looked at!

@AGreatUsername Unless you've lived the cold fear of scan results, I don't think you understand. Thinking of you for tomorrow and hoping you get some reassurance Xxx.

@thereisonlyoneofme that's totally unacceptable, the whole point of paying for a private scan is for things to move faster! Is it the GP who is supposed to read it? Is he/she supposed to pass the result onto Oncology? My frustration and upset with things like this is just how 'unbothered' everyone is. I remember building up to getting my CT results earlier this year on the Thursday after the MDT on the Wednesday. The CNS had assured me of date and as no-one had rung, I rang my her myself. Her deputy picked up the phone and checked and said cheerfully 'oh sorry, it hasn't been read yet so it will be on next Wednesday's meeting now'. She could have been telling me they'd run out of chips in the canteen 🙄.

Fantasea exactly. Im just one of the pile of paperwork to the GPs but its potentially a matter of my life or death. If Id waited for a NHS scan Id still be waiting. Ill just keep on pestering until someone gets their finger out

My scan came back ok. Currently no sign of cancer. She did say there were a couple of lymph nodes in the back of the tummy showing but these were unchanged since the original scan in May and not enlarged so they’re not concerned.

@AGreatUsername thats really good news and I’m very pleased for you.

@AGreatUsername what a relief, I'm so pleased for you.

@AGreatUsername that’s a relief. Let’s hope @thereisonlyoneofme gets the same result soon.

I went for my results today. I’m not sure what I think yet. I am rare and special and have a new unrelated cancer in my other breast. This one is triple negative grade 3 but small 14mm with no spread to lymph nodes. The advice is to go for chemotherapy first then lumpectomy and radiation. I’m meeting the oncologist on Friday to discuss what happens next. I think I need a port as my arms are no good now for a PICC.
It’s deja vu. DH says it feels like a game of snakes and ladders and we just slid down a snake back to the beginning again. I’m actually quite cheerful but that is because I was prepared for ultimate doom and it’s not that bad. The surgeon says they are so sure it’s not spread they don’t even need a staging scan.
I’m probably still a bit numb. I can’t raise enough energy to be upset.
Sending positive vibes to you all.
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@TopOfTheCliff so sorry to read you’re back down the snake- such tough news to receive. Might not be as bad as you’d feared but it’s still s@#£. Much sympathy.
Sending you positive vibes.

@TopOfTheCliff what bloody shit news. Big hug and thinking of you. Of course we will support you on your next journey.

HC x

@TopOfTheCliff what crappy news, I am sorry. I’m pleased they’re confident it hasn’t spread though.

@TopOfTheCliff Sorry you’ve found yourself back at the start again, what a bastard cancer is.

My night time sleeve arrived today, hopefully I can start work on reducing the swelling in my arm. I’m also going swimming tomorrow, apparently it’s the best way to help reduce lymphoedema. My hole in my chest has finally closed so I can get back in the pool, it won’t be fast or pretty but I will be moving.