Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Hello, I wonder if anyone can offer me advice? I wonder what the general opinion or is there anyone with medical knowledge like our lovely @TopOfTheCliff
Since taking hormone blockers I have been nauseous, fatigued, constipated and generally unwell. I stopped taking tamoxifen a few weeks ago but I’ve been told it takes 3 months to completely leave your system.
Recently I had a positive bowel screening FIT test and I’ve been referred for a colonoscopy . As the tamoxifen caused constipation so I wonder if that has led to rectal bleeding hence positive test.As I had a the procedure 2 years ago with normal results so the bowel screening nurse said it was unlikely to be anything to worry about. The GP subsequently ordered a blood test and bone scan . I have no bony symptoms but wonder if the GP suspected I have hypercalcemia. due to symptoms of nausea and poor appetite

Yesterday I went for my bone scan and an auxiliary nurse made 2 attempts in arm to inject radioactive dye and 4 in my hand. She only got half the dye in. I asked if she’d try again but she said half the dye should be sufficient. I then had to wait around the hospital for 3 hours for dye to take. They said my scan would take less than 20 mins but I was in there for 50 minutes because there wasn’t enough dye for a proper image.Because I took up so much time, I caused a back log of patients wanting for their scans and it was now late afternoon. I’ve worked in NHS for 30 years and the practice I’ve always observed is that if a nurse struggles finding a vein they ask someone else to have a go. However, she made 7 very quick stabbing incisions and my hand is very sore and swollen.

To cut a long story short, I’ve got to go back to be be injected again next week. I’m wondering if I want to go through this lengthy procedure again. I have no bony symptoms and the anxiety of speeding 4 hours in hospital and the worry of results is overwhelming. Also, is it actually harmful to be injected with radioactive dye and scanned twice within a week?

Last summer, after the lumpectomy and finishing radiotherapy I felt really well but I have now gone on a downward trajectory following hormone treatment and now the worry of bone scan and colonoscopy. I feel at a very low ebb and very weak due to weight loss. Should I forgo the bone scan and the colonoscopy? ( I’m thinking I could do another FIT test in a couple of months now the symptom of constipation is settling)
I’m not sure either are necessary and they are provoking great anxiety. I wish the scan had been done yesterday and i wouldn’t be in this anxious state. I just want to get stronger and have some normal quality of life

Nuclear bone scans are the worst, and I've only had one ever! If you were having symptoms of nausea and fatigue with high blood calcium then a chest/pelvis CT (which still involves a radioactive dye) would probably show more, and more specifics, than a bone scan. Most mets start in that pelvis/lower spine area because that is rich in blood supply. If it were me I would delay the bone scan a few months if calcium levels were in the normal range. You don't have bone pain, correct? I had awful bone pain/lower back pain with the nausea and fatigue that could not fully be touched by painkillers. Unsurprisingly I had some sizeable bone lesions leeching calcium.

I do know someone in Canada who had a similar issue with a bone scan recently where she was injected but then the machine went down. She had to go back a week later, however she is Stage IV already and at that point they aren't as worried about the level of radioactivity in the body. Its not great, but if you definitely need it for treatment thats one thing. For you, I would question in the absence of other mets symptoms if this is really the right thing to be doing.

Thing to remember is that with all these different doctors going by the book, sometimes the patient gets lost in the shuffle. You just finished primary treatment, another treatment which didn't work so well, switched to a new treatment, and now have this other thing going on. Why not give everything a break for a minute to restabilise, get that colonoscopy out of the way (maybe give it a few weeks), and then tackle the scan if needed.

@Mycatispretty what a horrible day! I hate it when the nurse struggles. They know I was a doctor and it worries them so they get anxious and bodge things. I agree with @HerbalRefreshment that time will help you cope better with the prospect of more tests. On balance I think I would prefer a doctor who took me seriously and investigated my symptoms rather than somebody who dismissed me, but after all this time I am getting a bit traumatised by having things done to me. It sounds as though you have the double whammy of dread of the procedure and dread of the results. You are quite rational in wanting to avoid this. Have you got a nice nurse to mull it over with? Sending hugs
Top

@Mycatispretty at my last couple of scans(with contrast) they have booked the appt alongside the hospital picc team who have used ultrasound to place the cannula which made the whole experience 100% better. Would you be able to phone the hospital and ask for this x

@HerbalRefreshment @TopOfTheCliff @Lisdeflores thank you so much for your replies. This thread is so helpful as I no longer feel so alone with my anxiety. I didn’t sleep last night, mulling it all over in my mind. I’m so tired I’m in no fit state to think properly. I have a meagre supply of zopiclone I haven’t touched yet so tonight I’ll take one of those and hope tomorrow I’ll have a clearer head.
I feel lucky as I have some great friends. I used to be a physio in a hospice so many of my friends are nurses and they’re being very supportive. I’d prefer to take advice from people on this thread though as you don’t really understand the physical and psychological ramifications of cancer until you’re going through it yourself

AHH I am drowning in appointments suddenly! I've broken the chipped tooth again so it needs filling tomorrow, and have appointments for 5 days of radiotherapy, taking my car for its MOT and now chemo bloods and F2F chat as well. How would anybody manage to hold down a job with all this lot to deal with?
I am pleased to report that Zometa infusion no 5 is benign so far. I am nesting by a cosy log fire with a hot water bottle, coffee and fruit cake. All is well.
Keep warm people
Top x

@TopOfTheCliff that sounds hideous! I meant to say, I’ve booked onto the Look good feel better makeup session thanks to seeing your post about it

I am glad @Mycatispretty and I think you will enjoy it. I find the benefit of the free cancer support stuff is very subtle but you go home feeling understood and pampered and just better able to cope. Somebody has nominated me for a three day retreat with Cancer Lifelines which sounds fabulous! I shan't take DH as three days of meditation and vegetarian food would drive him insane but I will love it.

Wow @TopOfTheCliff that sounds amazing and I’m so glad you were nominated. I’m a vegetarian and I’m sure it will be fabulous, nutritious food. Have you tried meditation before. I can’t seem to do it. I go to tai chi with my 86 year old mum ( the group are so lovely) and do yoga at home 5 days a week

@TopOfTheCliff so pleased you were nominated too! I'm also a vegetarian and would love that. So sorry you're bogged down with so many appointments, it gets so wearing.

@TopOfTheCliff i completely agree with you about the cancer support. I was in for a blood transfusion today, a volunteer from our local cancer charity was doing complementary therapies and I had a short reiki session. It was so relaxing particularly as being fairly recently separated from my husband I am really missing being touched/cared for by someone.

@bringonyourwreckingball im vegetarian too. I am also single. It’s hard going through this on your own isn’t it? At least when I’ve shut the front door there’s peace though

There's a thread on here about why women won't be having mammograms and it's made me so angry. Mumsnet should delete these threads when they get overrun with people insisting it's so degrading they're never going to attend. I'm sue for my first soon because of my mums medical history and I sure as hell want to go.

I've got a date for surgery now :)

(I'm the skin cancer lady)

I was just reading that thread and wanted to start yelling at all the misinformation and declarations that if they got cancer they wouldn't have treatment. A mammogram screening program starting at 40 would have saved my life yet these women old enough to know better are not even attending.

A few claim to have had grade 4 cancers too so, guessing one or two are not exactly being truthful. Anyone in this club knows the particulars and can speak the language.

Oh @Mycatispretty its so horrible all the procedures isn’t it; I have CT with dye every 3 months & I dread it since no picc (but life without a picc is perfectly good though!!!) It makes me SO CROSS going through all this trauma needlessly as we are just another lump of flesh to be processed. No way would I let a medic have a go and fail 7 times to get a vein. Mine are crap and I have ptsd I’m fairly sure from all that poking. I also get the team : ask for the vascular access team. Insist on it. They’ll come to the appointment (but no hurry; I agree with other posters, wait until you feel ready as you have no other symptoms) with an ultrasound machine and help find a vein.

when you’re in line and upset and want a break you can say no. That’s ok. I hope you have a sympathetic BC nurse or someone to talk to.

• in pain

although also in line I guess

Just had the call (they called as snowy here so 'might save trip in' - kind of them)

told 'fibro cystic tumour' & also 'benign dermto fibroma'

So - BENIGN - good news !!

I have an ASD teen off today so didn't speak for long.
They said happy to discharge me & I can google if I wish.

Quickly did & it seems that if you are prone to this then it's harder to self examine. Would it be reasonable to ask for an annual check on that basis?

@medianewbie - that sounds like very good news. You must be so relieved. Not sure about the annual checks - perhaps someone knowledgeable will be along soon.

I also have minor good news this morning as I had a check-in call with the chemo team. I've been mithering about not having my RT planning appointment, but I did have a mystery appointment letter come through for 'medical oncology' (which I wasn't expecting). It turns out that is the RT planning appointment, but wrongly headed. So there's more progress than I thought.

Hi everyone, I thought I’d come in to say I have slightly mixed news. It looks like my lump is most likely a benign rare intramuscular myxoma, currently waiting for the surgery to be arranged. Will only know for sure when it’s out but consultant is quite confident. my anxiety gone down but my systemic symptoms got much worse.

I am still having trouble with balance/dizziness and extreme muscle weakness and fatigue and it’s getting worse. So much so that drinking a glass of water makes me breathless. Standing and walking became very difficult. And there is no respite from it no matter how much I rest. Back to gp today but so concerned about these as I know that my bloods /thyroid/ vitamins are all normal. I am not diabetic either. I know the first rule is not to google but here again succumbed to it whilst waiting for the appointment and it leaves some nasty (some terminal) neurological causes. I know it’s not anxiety as I have been suffering with it for over 6 years and never felt like this. Sorry I am posting here, just feeling lonely.

@dotty2 Thanks for replying x I went to the appt after all but they said No extra checks, just go to GP if a lump / painful (only my breasts are ALL lumps? & it's still quite sore?). but still 'benign tumour' is much better than alternative. They have discharged me. Now just waiting on results of genetic screening.

@medianewbie hooray for the benign diagnosis! It’s wonderful but I quite understand you wanting regular checks to avoid a nasty one creeping up on you. Unfortunately the best guardian is your own vigilance. I used to get fibrocystic lumps and got a bit casual about them. It was only during the first lockdown when I had one that didn’t go away that DH bullied me into getting it checked and the rest is history. If you do a monthly round up of your normal lumps after your period is over you will pick up on any changes and the GP and the clinic will see you for scanning quickly. It’s much better than waiting six months for a routine scan. The anxiety will take a while to fade away though.

@Anxiouslikenoneother another benign lump to celebrate! It isn’t uncommon to have a big immune response to a tumour, even a benign one, so you may be having autoimmune symptoms. I certainly had a lot of joint pain and fatigue before my first cancer. There again everything gives me joint pain and fatigue! I am sitting around groaning after Zometa infusion no 5 trying to find some motivation to do some jobs.
Have you had Covid? Some of your symptoms could be Long Covid too. I hope you have a kind GP who works through the possibilities to find an explanation.
Hopefully after surgery you will feel better. Will it be a long wait?

I am having a slow time picking up after the Zometa. DH is going away for a few days so I may try to do some tidying. I am enjoying reading about Swedish Death Cleaning at the moment. I might try to interest my DM89 in this at the weekend. She could do with a new hobby. It will horrify my DB too 😂
Roll on spring! We don’t have snow here just grey skies and cold.

Very happy for everyone who has had good news. My good news today was actually making it to the hospital despite 6 inches of snow overnight. I had my last chemo/immunotherapy long session, 2 more weeks of paclitaxel then switching to 3 weekly EC.

It’s great to hear some of you ladies receiving positive news! I too read the mammogram thread and was a bit 🙄 by it. My mum (bless her) still can’t understand why my cancer wasn’t picked up earlier by a routine mammogram - because I’m too young! But it did make me think that if attendance is only at 65% then they should lower the age range just to fill the void.

Ive just had to Google Swedish Death Cleaning as I was intrigued! I too will be introducing it to my mum this weekend! I’m just on bed/house rest today as I had my delayed third EC on Thursday. Hope everyone has a good weekend.

Od my mother would throw the book back at me! She has no interest in anyone dying she thinks that if I eat more nuts and run through the park three times a day all of this will go away.

im feeling abit tired and down. It seems to happen every time I have a week off chemo. Im trying not to google but im so fed up about the unknown primary. Ive read loads of positive papers saying that scc p16 responds beautifully to chemo and I know thats my cancer in the groin. Interestingly, most of the women in these papers have had hysterectomys not for cancer. Surely theres a link? Its just a pain because Im wondering if I should be under gynae then I have to remind myself that I saw every single specialist and there was no sign of any cancer 🙁 except the secondary.

anyway its Oscar weekend so I should pick a film out for tonight, hope you all have a good weekend.