New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Gosh so along with Mrs that's 3 of you in for ops this month?

pandora good to hear from you xxx

Purple I can only echo others comments - keeping all fingers and toes crossed

KeepCalm bit of an emotional day then all in.

I’ve also had capecitabine for my bowel cancer and I feel like my lung mets responded really well to it. I think I’ve had about 8 months now all in and I don’t find it bad side effect wise. I’m expecting I’ll go back on it long term ish. It’s not been a bad drug for me at all.

And yes, it’s going to be surgery central round this thread this month!

I’m 46, married with 18 and 15 year old dd’s. I have Her2+ metastatic bc in lymph nodes, liver, bones and possibly lungs. I was Dx primary November 2015 and secondary Jan 2018. I’m currently on H&P, and like most people with mets live between the 12 weekly progression scans.

That's reassuring @Namechangeforthiscancershit thank you x

Thanks everyone, DH has gone home as visiting hours have finished and they're keeping me in until a doctor has seen me about my high pulse and bp

Good to hear from you Pandora! When you have your assessment answer the questions as if you're having a really bad day

Tahiti good luck for Wednesday

Lots of operations this month. I hope it goes well for everyone and you heal quickly

Yes sounds like it’s me, Pandora and Keep Calm with ops next week.

Apparently DH was less than impressed when I was chatting to the consultant about travel/insurance etc and turned to him and said rather than booking luggage for a short haul Ryanair flight I could just use my ample empty left cup to pop the luggage into.......

KeepCalm I LOVE that!

Hi. I had stage 2 BC diagnosed March 2017. Lumpectomy in May plus lymph node biopsy. Margins were stubborn so three further ops. Radiotherapy and now on Zoldronic acid and letrazole. If I can be any use to anyone, then happy to help. Mostly I lurk and send virtual good luck and thoughts to you all.

Not really the same thing when they’ve taken out bits of your bowel. No one wants you to pop their toothbrush into the space that leaves

Well actually some people probably do...

@Namechangeforthiscancershit

Hi, I’m Simmi, 42 with 2 DDs - one 5 next week and one 3. Actually both DD1 and I have our birthday next week on same day as your ops Pandora and Keepcalm - sending you good luck ⭐️. I have stage 3, grade 3 HER 2 + BC diagnosed in Sept 2018. I finish chemo mid March after which I’ll have radiotherapy then mastectomy with immediate DIEP flap reconstruction. The cancer seems to have responded well to chemo.
I’m in Aus and my doctors here don’t scan a lot - I had a CT and full body bone scan on dx (after mammogram and US on breasts) but no MRI. They’ve agreed to let me have an MRI on both breasts after chemo to check progress of right and nothing lurking in left. I asked my breast surgeon yesterday if I’ll be scanned periodically after surgery and she said no - only if I get symptoms. Do those of you who had BC get scanned periodically? I’m worried about the cancer hiding. They propose seeing me periodically after treatment for mammogram on left breast and clinical examinations etc but no scans unless something happens xx

Simmi I've had no scans at all - and 2 separate dx - thinking I should be asking these questions. My chemo is curative rather than pre op (adjuvant?) so maybe that is why. However I feel the same about it lurking...

Thanks KBG - mine is curative too as it’s not stage IV - I think chemo before surgery is called neo- adjuvant which is what I’m having. They’re seeing me regularly but just looking and feeling my breast and telling me it’s all working well but I worry about what they can’t see/feel. I see on thread lots of talk of MRIs which is why I’ve pushed for one xx

Hi,

I am noodles - 46 years old & 2 X DD's (8&4) Dx with BC in June last year with lymph node involvement. My treatment has been 7 rounds of chemo, followed by an op in Dec to remove the lump an do a clearance of the nodes in my left armpit too. I saw the oncologist today and my op wound is healed enough for the radiotherapy to happen. I will have 3 weeks worth targeting my boob and a boost week where they will also target where the affected lymph node was. Not sure when that will begin, probably in a couple of weeks as need another CT and an appt where they make their tattoo marks to get the lasers in the right places...

Sorry to hear your news purple I hope they will decide there is a suitable trial for you to go on & you are able to get out of hospital soon. Not at all surprised your blood pressure is high at the mo!

keepcalm that was a mixed bag of news... it sounds like they have a plan and only 10 days until the op, so that is positive. I love the thought of you packing for a mini break into your empty bra cup! Ryan air will still find a way to charge you for it I am sure!!

knicker I shaved my head a couple of times to get rid of the stray wispy bits. I felt better when it was more even. I got a wig from the cancer centre attached to the hospital (to keep from their donated stocks) I intended to buy one, but thought I would try that first & buy if I felt I needed one, but my head kept getting hot, so I only really wore it when taking my daughters to school (b4 it was cold enough for bobble hats) as they asked me to or if I wanted to not look like a cancer patient. I found it always felt fake, probably because I didn't wear it enough for it to feel natural. I spent my money on an eyebrow kit instead and a couple of new woolly hats & plan to get some eyelashes put on too as I seem to be losing them & my eyebrows which I feel make me look worse than the lack of hair. My last chemo was 2nd Nov and my hair has grown back loads, it nearly looks like a fashion choice!

Sorry you find yourselves here rosie and vixen the waiting for results is awful, just keep as busy as possible, don't look on doctor Google and chat on here. It (sort of) works...

Leslie glad the gravity blanket is making you feel cosy. My brother & sis in law bought me a woolly wrap in the summer (it looks a bit like a travel rug but half the size!) and I have used it loads. It is lovely and soft and feels like a hug in blanket form!

Waves and hello to everyone. My iPad is losing posts part way through as it refreshes randomly, so don't want to lose what I have typed...

Knicker and simmi I had a mammogram and Ultrasound when diagnosed, followed by a CT, bone scan and MRI of my head to check it hadn't spread. Since then they have only checked the size by feel and US. I will have another CT before radiotherapy, but I think that is it. I think once that is done, I will be on tamoxifen and have regular mammograms - not sure how frequently yet, but the surgeon indicated he would see me in 6 months last week.

The BC nurse I have talked to says that the worry about recurrence & spotting the early signs is what worries most people afterwards...

flippy I totally get where you are coming from with the worries (& why you didn't opt to find out over Christmas too) Hopefully it is just a seasonal cough, I remember when my daughter had a particularly bad one once, it seemed to last forever and a GP friend said coughs can stay for up to 6 weeks and at this time of year, she could have just picked up another cough after getting rid of the first. Hopefully it is just that, but unfortunately it isn't what you think of when it is you and you have had cancer. I hope you find out soon

Simm I feel a bit worried now as I haven’t had a bone scan! I had a CT when diagnosed and then an MRI at the beginning, middle and end of 7 rounds of chemo. I also had an lung scan as a small nodule showed up on the CT. it that turned out to be nothing.

I also have 3 monthly ECG’s.

Also, if you are awake in the night & in need of something good to watch, on the ITV hub is a drama called Innocent. I had a bad night on Saturday and managed to get through 3 of the 4 episodes. It is really good and is not on there for much longer (about a week now I think)

New here, but referred tonight to emergency breast cancer screening. I am awaiting appointment. I have an enlarged painful lymph node. Feel fine otherwise.

MrsT my oncologist didn't think the bone scan would show anything from seeing the CT results, so maybe it just depends on what the hospitals policy is regarding the scans. After she said that, I wasn't sure why I was having it, but they seem to have a very belt & braces attitude at the hospital where I am treated.
I have had an ECG before & after chemo too. Not sure if I will have more. I was told today about the importance of breathing when I am told as the side getting treatment is the left side & close to the heart, so I need to hold my breath when the laser is on so my heart doesn't get zapped! (He didn't say it in those words, but that was the gist of what I took away!)

Hello lovely people.

I am 46, married with a stepson. Diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) on 22 November 2018. Mets in lymph, liver and ribs. Have had 2 rounds of chemo so far. I am not curable but they are aiming to ‘manage’ the cancer. Just taking each step as it comes at the moment.

Has anyone here tried the cold cap to limit hair loss? I have done it with both sessions but still seem to be losing an alarming amount of hair. I had very thick hair to start but I reckon I have lost 40% already.

purple I am so sorry to hear you are having a shitty time in hospital still.

To those of you about to embark on surgery - sending all the healing vibes and hoping that your lines are clean and happy.

To those awaiting results - yes it is the suckiest of sucky times. Some great advice up there on how to try to get through it. The best advice is Avoid Dr Google. I wish I had.

I sat and read back through quite a few of these threads at the weekend. They are so, so helpful in terms of support, information, humour, tips and so much more. Thanks so much for keeping them going. I am finding this a major lifeline at the moment. Thank you xxxx

Sorry you are here littlebillie and hopefully you will get an appointment through quickly & it won't be anything to worry about. Try to keep in mind that most lumps and bumps are not cancer... The waiting is not easy though as your imagination goes into overdrive...

London I cold capped twice and then my hair started falling out at the front mainly. It looked horrible and I hated waking up with my hair on the pillow, so I shaved it off as I had already had it cut quite short pre cold cap (as had heard that helps to not have too much weight on each follicle, not sure it does though) I felt much better once it had come off and was quite liberating.