Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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@TopOfTheCliff oh! Online weights session with Macmillon sounds perfect!

@craggyrat it sounds similar to mine.

At the moment classed as stage one but I need an mri scan on Monday to fully check. I've a date for surgery though, in a month. Fully expect it to go higher as they saw some other spots.

I'm on hrt too. And need to come off. And then onto tamoxifen. Very much happy to hold hands!

I've wasted a morning chasing my daily contact lenses. I have only the pair I'm wearing. Stupidly no glasses. It's their mess up but I didn't realise how few left I had.

They were ordered two weeks ago apparently but not actually physically sent out.

Argh. So going to wash (with fluid) and reuse the same pair for a few days...

@TopOfTheCliff

Tidying house....

Yes I'm in total scurryfunge mode. It's a hoot as we've been in perpetual disorganisation for several years after second small child and pandemic chaos.

@Ikeameatballlunch sorry we are in the sane boat! I had really early menopause at 37 and no HRT. Am not having MEI I don't think. Hoping to get surgery date asap

I'm also really sorry we are in the same boat. It's helpful to know others. I know another mum locally, her son is good mates with

Oops. My oldest. But I'm learning that actually, often you'd far rather talk about nice or nonsensical stuff.

I'm overly bouncy today. Trying to get shit done. Apologies.

I'm also going to name change as this name is making me feel physically quite sick! I'll say who I am though.

Yes I prefer to talk about other stuff in normal life although have a couple of friends who have been through the same

Thanks for the agreement with my choice to wait 5 days for my MRI to save my WEEKEND of fun! Having a better day today, DD was poorly yesterday so spent a lot of time doing not a lot but she's back at school today so been able to get out and about with DS.

I also don't like talking about what's happening really. I do a weekly weights class and none of them know yet so that's like my hour of being completely normal again.

Also craggyrat sorry for your confirmed BC.

And @Ikeameatballlunch I order my lenses from visiondirect online and they're very quick to deliver, usually the next day.

Omg! We're off to see Taylor Swift 🎶 We've been trying all day & this time it showed us the best tickets & price it has all day 🥳 I'm well chuffed & dd2 screamed down the phone when I told her.

I have had a few moments of "what if..." while trying but for now, it's all good!

I've been quite "meh" and tired all day, not done much other than stare at the screen & hit refresh...seems the adrenaline from "gogogo book them before someone else does" has woken me up so I'm going to try a new recipe for tea.

@craggyrat sorry to see your diagnosis 💐

@Ikeameatballlunch scurryfunge is a fun word! I had to look it up though .

I’m the same as you @craggyrat except grade 3. I had a mastectomy with a reconstruction just under two weeks ago. I get my full results on Thursday which should confirm the grade, tell me the stage and whether my lymph nodes are involved. At this time I have no idea of next step but I’m all things crossed for tamoxifen only and no further treatment as such, I’ve already had enough of being prodded, poked and pricked, hope you get your date soon, I believe the NHS guideline is treatment within 61 days of diagnosis. Best of luck!

Thanks @Scandimandy hope you're doing okay.

Am working today but not really feeling it!

Do you still have a drain in? Either way it’s worth giving your BCN a call. If the drain is still in then (in theory) that should be taking the fluid away. If it’s not then they may need to manually drain.

FWIW, I had my lymph node removal then a drain for a week, they took it out on the Tuesday and I then got a seroma which needed draining on the following Friday and then every few days since, gradually lengthening the time in between drainage. It makes my shoulder feel a lot more stiff and sore and then when it gets drained feels tender for a day then much better! If that helps at all.

@AllotmentTime i didn’t have a drain. I might give the nurse a ring tomorrow and see what they say. I think it is a seroma as it’s yellowish

@bringonyourwreckingball I assume its normal (though am wondering the same). I developed a seroma at the lymphnode biopsy site and still have it over 3 weeks post surgery. I also have one above my reconstructed breast. Draining is apparently not recommended unless it gets really bad as it would just fill up again. It is very annoying and uncomfortable.
@craggyrat It sounds like it has been caught early and is the most treatable kind. Still BC and so still shit, but, in this context, let those elements be of some consolation.

@isaxx that’s good to know thanks. I have promised the kids I will ring the BCN tomorrow (I had a bad complication during chemo and they’ve been v protective ever since) but helps to know it’s probably routine

@Crimsonbow may have to swap ti them as optical express keep doing this to me. But I cba!

My favourite colleague popped round earlier on with a gift for me, and made me cry in a nice way 😊 She's included some pampering bits, some teas and coffees, a wax burner & tea lights, photo frame and dinky bottle of wine...just up my street.

I was meant to be heading into school tomorrow for early years sports day but no-one's got back to me about whether they'd prefer me to head in earlier so it doesn't disrupt the children on the field, or whether to meet them out there. & I don't want to inadvertently have 40+ children not follow instructions because I popped up on the field 🤷‍♀️ Maybe I'll just leave it - everyone's likely to be rushed off their feet with end of year stuff & probably forgot.

@craggyrat sorry to hear about your diagnosis but I found it much easier to know than not know when I had an identical diagnosis to you back in Jan. I found the lumpectomy and sentinel node biopsy quite easy to recover from and didn't have any side effects from radiotherapy. I would recommend asking your oncologist about whether genomic testing (Onco DX or Prosigna) is an option for you though. This is a test for early hormone positive breast cancers without node involvement and can give an idea of the risk of future recurrence. I had to really push for it as they thought I was too low risk for it to be of value. Glad I did though as the results came back as far higher than anyone expected and so I'm now having a course of chemo. Not great, but far better to throw the kitchen sink at it now to prevent rather than, fingers crossed, having to treat something more worrying in the future.

Good evening - may I join? I received a diagnosis yesterday of breast cancer that has spread to lymph nodes. CT scan threw up what they are confident is a cyst on the liver but I’ve got an ultrasound tomorrow to be sure.

Welcome Flora That is the same as me though I am through treatment now apart from Tamoxifen and DIEP. Its common for cysts and things to show on CT and good they have said its a cyst. I had about 8 things show on mine and a few very scary tests before all OK'd.

Fairywren That must have been wonderful to be in Borneo and yes Land Below the Wind was the book.

Polly Swimming with sharks sounds exciting.

I also love kayaking / rowing / canoeing and DD has inherited it and has a job doing it which is great as it pays very well and she gets fit.

I have had something wrong with my back for a couple of days now and struggle to move at times, get like a paralysis for 10 mins or so and have pain. I called the breast care nurses and they got oncology to call, also have pins and needles and numbness. DH reckons its being 50. They said they probably will want a spine MRI to check for spread to spine but am awaiting to hear. Hopefully just nerves for pins and needles and numbness and bad back hopefully is my new pillows that are memory foam though the nurse was like hmm how would that work. Never had a bad back in my life. It is mainly lower back and looks like its rare that's cancer but eek looked up survival if it is and said under 2 years average. Oh well nothing I can do about that but I would want to go to Borneo first. 😂I was 99.9% certain it would be nothing until I googled the symptoms and have them all. But then I have had every symptom of a few cancers before and negative then breast cancer no family history no symptoms until a massive lump appears and bang cancer.

Thank you silkie. What treatment did you have and when? Fingers crossed your back pain is just the memory foam acting up.

I had a mastectomy and sentinel node biopsy as my scans were clear for node involvement but surgery found there were so had a second operation to remove nodes, you could have that all in one operation and its not as bad as it sounds, its done as day surgery and worst of symptoms are over in a week, well with no reconstruction, a bit longer with reconstruction.

Then I had chemo 12 weekly paxs which was the worst bit by far for me, then had radio for a week which was really easy and then Tamoxifen which is just one tablet a day for 10 years and pretty easy. So from first diagnosis in Nov to August of lots of treatment but then it stops and you get your life back mostly. Its a tough year but take it day by day and take all the support you can get and you will come out the other side cancer free this time next year. I was cancer free after surgery. The exact treatment depends on your results - I was grade 2, 2 cancers both lobular 46mm and 17mm, her neg, hormone positive. If you are already past menopause you might get away with no chemo. Pre menopause some with node involvement escape chemo.

I do think the bad back is the memory foam pillow but when the nurse went hmm I think we better give you a spine MRI I thought yes that does remind me of when I had convinced myself the 5cm cubed lump in my breast was covid jab reaction.