Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Silkie

My cancer is lobular, stage 2 I had a lumpectomy in August, my tumour was 35mm with a smaller extra bit attached to that tumour. My oncology notes also say there was ductal cancer too but only found that out after surgery. Definitely a conversation to have with my surgeon when I meet with her at my 12 month appointment.

Lobular cancer doesn't respond well to chemo and doesn't always shrink it (this is what my surgeon told me) hence surgery first. I had 3 lymph nodes removed which were clear. I may have got away with just radiotherapy but because I'm triple positive my cancer feeds off my hormones so I've had to have chemo with Herceptin which blocks the hormones.

It really is a shitty time. It's surreal in many ways. Im 52 with grown up sons but they still need me and I want to be around for them as long as I can. I've been happy to do anything they've told me regarding treatment.

Once you have your plan you will feel much calmer and have something to focus on, then you just get onto a treadmill of appointments.

Massive hugs to you

Thanks BG and hugs to you too.

Interesting about the chemo. They had a basic plan but it suddenly started to change. Started off saying if I wanted to preserve my looks they may be able to do lumpectomy and take tissue from my sides. I said I just wanted to be alive for kids and do what safest don't worry about my looks. Then I added I'm no expert but how can there be enough tissue on my side when the whole of my top half of breast is cancer. The doctor said let me examine you and then went like he was about to swear and said yes a lumpectomy may well not be an option, you don't have one big lump only, you have a second lump as well which must grown in past week and is by your lymph mode. He said we need to meet again. Then he asked me if it had appeared over past week and I said I do not know thinking hope not. Then he said will look at mammogram and said there is a second lump on there which looks cancerous which we have missed. He said its about 2 cms and by lymph mode. I said about hip and rib pain and he said we need CT as well then as MRI. Then he said I will need to leave and urgently look up your records due to second lump missed but nurse can talk to you.

Nurse was good and seemed know quite a lot but whole treatment plan is being re-discussed now. I think it will be mastectomy first then will re-evaluate and they mentioned radio as well. I asked about chemo and they told me about it and said I may have that and said it would have been definite if one of my results was negative instead of positive, maybe oestrogen.

Had to tell my DS too which was heartbreaking but no way can hide it. He is asd and pretty much mute, 14 but acts much younger. He just cried put his fleece blanket over head, hands over ears and pushed away cuddles. School support is in place and have contacted one of his old friends as currently no friends and hope they will meet up.

I have lobular too, and its sneaky nature is very hard to come to terms with. Each hospital visit seems to present me with more bad news, as the scans seem to be so inaccurate. It doesn’t fill me with any confidence or security that I can be treated well. This has played havoc with my mental health, never great in the first place. I do always look on the gloomy side of things and I’d like to change it. Has anyone ever tried the Macmillan BUPA counselling service?

Sorry you have lobular too Daisy What stage is it at? I am not very optimistic either tbh but just trying to either forget about it or live in the present. At least I got to late 40s before I got it, some people aren't that lucky, its rubbish but can't really change things. Not tried counselling, just doing hiding under a fleece duvet, I can recommend that.

What exercise do people do? I saw exercise can help. I don't like walking. Favourite is swimming but not sure how feasible that will be through treatment and what covid risk is, ended up in hospital with covid though think can be OK.

I could get exercise things for at home though our rowing machine is just gathering dust. I did do some at home exercise videos before but then gave up. Love canoeing / rowing but that is a summer thing. Probably at home is easiest and safest for covid free but what to get that will actually use? Thanks. Used to go to David Lloyd and that was great and got super fit there but its so expensive and now am not really earning hard to justify but oth I would get fit there if well enough to go and enjoy it.

Having read through a few earlier posts, it seems there’s a misapprehension that scans not showing anything must indicate how small the tumour is. That is sadly not the case with lobular breast cancer. It’s like a spider’s web that spreads in single-cell filaments or planes and doesn’t create the distortion needed to show on scans. There are several subtypes of it too. Mine - plural - also common with lobular - are big and didn’t show. I was rediagnosed from stage 1 to 2 to 3 within weeks.

D*aisy
*
Sorry you are going through this too. I'm just at the end of my bad week after having chemo #3 and it's all consuming. I wanted to go out for a lovely walk and have lunch out somewhere today but I'm just too tired.

I've read that lobular is like layers of cancer? Not sure how accurate that is. Mine was a definite 3cm lump.

The statistics are very good for survival rates and I've not once thought that I'm not going to get through this. If we do what the drs tell us, accept the treatment and move forward then we will get well and can fight this vile disease.

Regarding exercise, they do say that once treatment is over exercise can help to reduce reaccurance. I'm an avid Walker and pre-Covid a regular gym goer but need to really think about what exercise to do when I can. My running days are over and I'm not very motivated to work out at home. Swimming is out I think until you're out of active treatment.

It's definitely something to think about. Enjoy your Sunday everyone

I don’t think I’m having chemo, as they say it won’t benefit me. No doubt that’ll all change next time I go to the hospital in a week. Happy Sunday, all.

Hi I'm 22 and really scared , the dr found a lump in my right breast and I have been referred to the breast clinic my app is on the 30th . I have a history of bc in my family which is worrying . My grandma and my aunt . I am terrified that I'm going to get the worse news possible , I have two kids age 1 & 3 and I don't want to leave them :( the dr said could be cyst or fibroadenma , my lump is Oval shape and smooth can move it slightly with my fingers . I am so scared 😭

Thanks BG re exercise. I am not sure if I will be capable of any once treatment starts but I do find exercise helps me be physically and mentally stronger and seems to help a bit with chances so want to try something. But need a massive kick to actually do that. Probably best to discuss with hospital.

Its so hard Daisy to get worse news each time. Mine seemed to go for all the bad news at once, I did ask for honesty I guess but even with my prepare for worst hope for best approach its tough to hear. Mine is stage 3 or stage 4 and the stats arent great though stage 3 is curable at least and rates are improving. My doctor said to expect them to find worse on surgery though I am already at 7cms and in lymph mode and nipple so I cannot move to a worse category for breast cancer unless its gone to rest of body which first doctor was very optimistic about, second one was hopefully it has not but ct will tell. I think people cope in different ways, I certainly do consider I may die and what practicalities like will done, but if that thought is a lot of the time rather than a few minutes I think counselling is worth a try. I cry for a few minutes then I am fine then I cry for a few minutes then fine again so its manageable. I am also a type chemo does not respond to I think her2 negative but they did mention may get chemo but seemed less likely than radio and also by this stage nurse was there on her own but treatment wise I think anything is possible but they are the experts and will just go with what they recommend but will be tough to go through. But it is hopefully what will keep us alive for many years to come Daisy

@vb123x Sorry you have joined us on this thread. You are doing the right thing getting the lump checked & it's good you are being seen so soon, although of course the waiting is terrible. It is easier said than done, but try not to worry until you know what's what - throw yourself into some distracting activities, perhaps christmas stuff with your DC? I found a lump & was diagnosed in December last year & it was most surreal getting on with christmas as normally as possible. Keep posting if you need to get your worries out.

@vb123x so sorry to hear that. I’m no expert and fairly new to all - the waiting is the hardest part. Advice I was given early on as not t9 Google, stick to sites like Macmillan and breast cancer now. If the doc has said that there is a very good chance he’s right- he would not be giving you false hope if he definitely thought it was.
Write down all your questions. The clinic will be very thorough.🌺🌺

Hi, been directed here by@Skap(thank you).
So far my bc diagnosis is stage 2, nst, er8, her2-ve.
Surgery to remove tumour and lymph nodes on Thursday, so will probably know more then.
My DH died in July after a 9 week stay in hospital with pancreatic cancer, never made it to surgery.
My Father in law died last week, probably having lost a lot of his fight after DH died.
Various other rubbish things have happened recently, it’s not been a great time for us.
I hope everyone on the thread is doing as well as they can under the circumstances, sorry if I’ve been a bit self indulgent in this post,

Oh Podge Am so very sorry, please talk about you as much as you need, that is so much to cope with.

I also have breast cancer but just starting on the journey so not sure what all the abbreviations mean atm but I hope the surgery goes well.

Ah it's a all a bit shit this weekend isn't :(

I'm so sorry to read about the new people joining and waiting. I can only echo what the others are saying, stay the feck away from Google, keep busy where you can and yes, hiding under a duvet helps.

I've had my #3 round this week and seem to be suffering worse each round 🙄, work seem to think that I'm back though as I've logged on and looked, then suddenly I get an avalanche of emails asking me too many questions and leaving me overwhelmed 😒.

I get so tempted to throw in the towel at work, as I'm reading on many FB groups that people are still working during their chemo and it is making me feel stupid for not doing it. 🙄

Sending virtual support to everyone. x

Just catching up on messages. I’m sorry for anyone that’s struggling. Silkiechickens that’s a lot for you to take in. I hope you’re doing ok. I can relate to an earlier post about getting bad news all the time. That’s my experience- stage 4 bowel cancer with a mutation that means I don’t respond to chemo. This weekend I have felt so bleurgh & sad. It’s so hard all of this. I just wish I could undo it & not have cancer. I find it so bizarre how earlier in the year I didn’t know I had cancer & now everything has changed. It’s like a nightmare. Sorry to be such a downer, just feeling really low.

Has anyone had counselling through Macmillan? I’ve had a few sessions of private counselling but it’s getting a bit much financially

Ilido Thank you and so sorry you are feeling low, totally understandable and would definitely give the counselling a go. I cry about half an hour a day but in 3 minutes each time and the rest of the time I can forget about it or cope OK so its not too bad and DH is here and supportive though he does set me off when he holds my hand and says we will grow old together. Its well intentioned but growing old together is something I cannot think of if I want to cope. I have to think more day to day then I am OK and life feels more like normal. There's a lot of hiding under my fleece duvet but its very nice here and I have a thatched cottage with a pretty garden with birds. Lots of lovely pets, a lovely husband and lovely kids. Please feel free to PM me if chatting to someone could help, fine for anyone to PM me.

Paddington I have stopped work and if you can afford it would seriously consider it. It is one less thing to cope with and treatment can be a full time occupation. At least I know I can just spend days under my duvet though I do need to add some exercise into my duvet regime but right now its nice and snuggly and I haven't the motivation.

My DS is asd and really struggling but no friends here and talks to no-one but I managed to get in touch with an old friend of his where we used to live and the Mum was so lovely, she spoke to me on phone for an hour, is arranging meetups for the boys and another old friend and also said they communicate via X-box so will get DS one and she said they can be in a group. Her DS was cheering in the background as he missed my DS. She also said to phone her whenever I need to chat, should be OK on that but lovely to have someone. That must be the one upside of cancer for me, its the easiest time to make friends.

@Silkies what a lovely mum, hopefully your DS will find benefit from it it. My DD is ASD as well but sadly never quite gelled with anyone, she seems OK though at the moment and I know support is there for her at the school should she need it.

I'm considering signing myself off sick the next 12 weeks, I can't have work hanging over my head with all of this chemo and health concerns too. I can afford it fortunately.

@paddington I'm about to start chemo #5 of 6 and have told work I won't be back between treatments this time. I'm having stronger side effects on the docetaxel and the cumulative tiredness is getting too much, even though I'm working from home. Harder than that though is the mental impact of the chemo - I'm finding it hard to care about work with everything that's going on and as I manage a team -of whingers- it's important that I'm on form to do my job. It feels like time to stop and look after myself now, you may be at the same point.

@SewingBees that resonates as I suspect the side affects will be compounding after each round now.
I'll make some calls this afternoon.

@PaddingtonStareBare I went sick through chemo and surgery.

I'm getting a lot of "I was fine when I had it, or XYZ said they were OK, and they still worked."
Aside from wanting to drop them off a very high and painful bridge how do you react or manage others expectations of you during it though?

I think I might need to just tell more people to feck off with the unhelpful comments 😁

I would get signed off then Paddington, so you can just rest inbetween. Just got mri through for tomorrow evening, fun starts early this week but great so fast, well as great as cancer testing gets . Second Mum been in touch of DSs old friends.

And ct on Thursday.