Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

@DivisionBelles wishing you all the best for pre-op and surgery. Not surprising you are feeling scared, it's a hard time for you.
@gillmoregirl hard times for you too, waiting for more tests and consultations. Nothing I can say to make it any better, but there are so many of us here rooting for you and wanting to offer support.
@Lizdeflores sorry to see you here, but welcome. Have you had the blood tests, and do you know when the results will come through? Of course I hope there will be nothing to worry about, but if you need a hand-hold for ovarian cancer, I'm right here! Diagnosed just over a year ago, finished chemo at the end of October.
@Thymeout you made my mouth water mentioning doughnuts! Enjoy all the Waitrose goodies!
@happyjack12, how are you doing?
Waving at @Skap, nice to see you again. Are you worrying a lot about the cancer coming back? The pandemic seems to have distracted me very nicely!
Sending warm thoughts and good wishes to everyone here.

Thank you @Bloodybridget

I'm nervous for sure, but just want to get it over and done with now. This time in 48 hours hopefully I'll be back in my hospital bed recovering.

Evening everyone.
I’ve not been on for a while - I was waiting for ct scan results and CA125 bloods. It’s been delayed as the bloods were taken In Feb. My ct was delayed and then suddenly took place but the results took 5 weeks. My DH rang and left a message in the end saying could someone please find out and let me know!
Anyhooooo. The results arrived and I’m still in remission. (Colon cancer diagnosed feb 2019. R hemicholectomy in March. 37 lymph nodes taken and ALL were clear)
However my 5 year surveillance turned into forever surveillance when I was then diagnosed with Lynch Syndrome.
The gift that keeps on giving 🤦‍♀️
So welcome from me to all the newbies. Happy to chat about my journey if I can help anyone x x x

@Bloodybridget my G.P phoned yesterday to catch up. My ca125 are back and althoughI don't have an exact figure they are higher than expected. The G.P said that I should hear from the hospital within the week ,if I don't to contact her and she will chase it up. Still holding on tight to the fact that this could be something else other than cancer. My worried are increased because I have been on treatment for crohns disease which can increase tumour growth + suppress my immune system increasing my risk of infection. I also had a benign tumour removed from my lung 7 years ago, so I worry that I have used up my good luck, irrational I know!
Thanks for your support x
I need to at the day started with all the joy that home school brings!

Hi @Borntobeamum
37 lymph nodes clear is fantastic. Same op as me. Where was your tumour? Wd you say you are feeling fully back to normal now - apart from the worry of Lynch?

Did you have chemo? I was half-way through oral chemo when covid intervened. Can't say I'm sorry. 6 weeks later, I'm only just getting my energy back, not helped by shielding. Can't walk v far without bumping into a wall or a fence. But colon-wise, I don't miss the third that was removed and can eat whatever I like.

Missing Lesley. She'd have been a brilliant resource for Gillmoregirl and cheer us all up.

@Bloodybridget - how are you doing? Are you able to do any socially-distanced rowing?

@gillmoregirl When you are feeling more settled, google 'I wish I had the voice of Homer/To sing of rectal carcinoma - by JBS Haldane. (Sorry must learn how to do links.) It's v cheering but you might not feel in the mood for a laugh at the moment.

At consultant appointment today. I do have cancer but the lump is fairly small and hormone related. I will have a lumpectomy and 5 straight days of radiotherapy. I'm actually quite pleased now I know what's happening. DH will be doing a Dominic Cummings and driving up to take me to hospital.

Hi ladies I havent been here for weeks. I had my second EC chemo last Friday I'm finding the effects arent as crappy as first time round. I'm still tired but that's normal isn't it.
I'm wondering how do they decide if it will be 4 EC or 3 EC 3 abraxane? My foggy brain cant remember what the oncologist said. The chemo nurses wherent sure the other day because I've already had surgery it was in 2 lymph nodes out of 5 removed but they decided further surgery wasnt a good idea because of the whole covid situation. They said usually that you have 3 ec then surgery then 3 more after your lab results are back. I dont know why I'm letting it bother me so much this week but it is the weeks are flying by though I cant believe its june already it feels like February was only last week when this nightmare started

@derxa sorry you have to have more treatment, but you sound very calm about it - I hope wherever you live, hospitals aren't too busy now so you won't have any delays.
@Borntobeamum nice to see you again, pleased to hear you are still in remission. Of course having Lynch syndrome will mean extra anxiety. Do you know stats re likelihood of further cancers, or would you rather not know? Apologies if that's an insensitive question. I've done a lot of googling re my situation!
Thinking of @DivisionBelles having surgery today.
@Lizdeflores hope you do hear from the hospital and don't have to chase- did the GP say they would chase for you if necessary? My surgery followed up very fast when I was waiting for diagnosis and needed a scan.
@Lurkeycakewoman I don't know anything about your treatment, but hope you can get the information you want soon. Can one of the cancer nurses find out for you?
@Thymeout I want to read the Haldane thing now, I love an incongruous rhyme! My rowing club only recently opened for single scullers, who have to book in as they'll only allow one or two people there at a time. I always go out in a four or quad, no idea when we'll be back. I'm ok, thanks for asking, baking frequently, eating too much, rather irritable.

Thymeout My tumour was In The ascending colon. I felt really well physically all the way through including prior to the diagnosis. I had no idea I was ill and it was discovered when we moved house and I registered with a new doctor. They did a mini health screen and this showed I was anaemic. They suggested a faecle sample and that was positive. I was then fast tracked and all hell let loose!
I’d had no pain, discomfort, visible blood or lost weight.
I felt well in myself after about 2 weeks and the only time I struggle is when it’s scan or colonoscopy results time. I get very anxious waiting unfortunately.
Bridget I know I am at greater risk for endometrial cancer and my geneticist has suggested I speak to my GP about a hysterectomy, however Covid-19 has scuppered this plans for the time being.
However my daughter was called by the genetic department yesterday asking to see her next week to begin testing to see whether she has LS.
I’m also waiting for an endoscopy which was cancelled in March. X x

@Bloodybridget The hospital phoned yesterday and my first appt is this afternoon.
Much love to everyone going through tests,,surgery and so the anxiety that goes with it. Xx

@derxa sorry you have to have more treatment, but you sound very calm about it - I hope wherever you live, hospitals aren't too busy now so you won't have any delays. Thanks so much. I'm lucky in that Lanarkshire HB quickly transferred their breast cancer team to a private hospital in Glasgow. It's been so easy. What has surprised me is the sense of cheerfulness in the hospital. I've got a lovely surgeon with a great sense of humour.
Sorry I haven't been very supportive to others on here yet. I will once I get my head round it. to all. We just have to keep soldiering on.

@Thymeout Thanks for that. It made me laugh and actually very true. We have to trust doctors know what they are doing after all what's the alternative. I'm still in numb mode I think because I'm not really thinking about what's ahead apart from wondering when my next appt will be. Just want to get on with it now and get this fking intruder out of me.

@Borntobeamum. Great to hear you are in remission. At this point I don't know what stage I'm at until after surgery but I'm sure I'll have loads of questions when I get my head around things

I have been having weird dreams and wakening with dire thoughts. Not only is thing fucking with my ass it's mind fucking me as well. (Sorry for language but it's how I feel). Trying to get through work days as though nothings wrong is also a task but I'm keeping all to myself till after surgery.

I wish Leslie was here too. She was remarkable.

Apologies for not name checking others. I struggle to review posts in this phone but thinking of you all. ❤️

Op was first thing this morning and have been back in the ward since lunchtime. I am very relieved. Just got an X-ray tomorrow as my chest showed a tiny shadow at the top of my arm - hopefully nothing, but they want to be sure, then with any luck I can go home. I feel surprisingly ok, only minor pain like period pain but I have morphine to cope with it. Haven't looked at my wound yet, but was laparoscopic so shouldn't be too bad.

@DivisionBelles Good that you have this over you and hopefully you will need no further treatment. Wishing you speedy recovery from this surgery. 💐

Yay I'm going home today. Had my X-ray - a bit worried about what that might show as not sure I can deal with anymore bad news. The consultant did say on the phone last week that it was a 'tiny, tiny shadow' but they need to have another look. The doctor who saw me this morning was less reassuring as she said they don't know what it is and of course that's got my mind going again. I must stop Googling. I have no pain and no symptoms at all, so hopefully it's nothing.

Hello all! Sorry too tired to post individually but hope you're all doing as well as you can.

I had my third EC last Thursday. For the past few days I've had various aches in my back. My mind is whirring and I'm thinking this thing has spread. Phoned my nurse and she tried to reassure me that its a normal and a side effect of the chemo and/or immune booster. Has anyone else had this?

Hi City Bumpkin

Not on here often but I had breast cancer with chemo and the injections. Joint pain is definitely a side effect of the injections and I remember my lower back being bad. I ached all over for the first 4 or 5 days of each cycle that I had the injections. After about cycle 3 I think, GP prescribed co-codamol. I only needed them for a few days and then the worst of the pain seemed to wear off.

I am sure the nurse is right. Don’t hesitate to ask for pain relief if you need it.

@Mrstraveller Thanks for the reply. Hope you're doing okay now

The aching is more middle/upper back and on the right side (side of the bad boob). I didn't have it on the other two chemo cycles. It doesn't feel like joint pain, more muscular. My skin in places is sore to touch. Its now 6 days after the filgastrim injection (I just have one injection the day after chemo) and the aching just isn't disappearing.

@Borntobeamum
That was a really lucky move and a conscientious GP. I think a lot of cases of tumour in the ascending colon get missed because it's a long way from the exit for the usual symptoms like obvious bleeding to be picked up. I didn't have any symptoms either, and, if it hadn't been for the unconnected scan, would have ended up in A&E with an obstruction and emergency surgery.

Yes - re scans. I never worried about them before because it was only a minute percentage of a minute percentage that I'd have any further probs with the ovarian issue. But que sera, sera and getting my stamina back and making the most of the summer is a good diversion.

@gillmoregirl

I don't think I'm really strong - I think it's the paroxetine talking. I originally started taking it because I took to waking up every day with a dreadful swooping feeling as if I'd just run over a cat. I have a theory that as you get older, your body isn't as efficient at making serotonin. I wasn't anxious in my head, when I was awake and rational. It was a physical deficit that could be fixed with a pill.

You've just had a very nasty shock and it takes time for your body to adjust. Some people swear by mindfulness etc, but it's worth having a word with your GP if it becomes too much of a problem with work and family life.

Glad you like the Haldane.

city bumpkin

Yes I had the symptoms you describe. At certain point I couldn’t bear to be touched as my skin felt sore and sensitive.

I think I had injections in my tummy for about 8 days after each chemo.

I think if your nurse is confident it’s an expected side effect, maybe just mention it again when you have your next treatment if you are still concerned.

I’m doing well now thank you x

I had a rubbish night's sleep. I'm so worried about the 'suspicious lesion' mentioned on my discharge letter. When I spoke to the consultant before my op he led me to believe it was nothing but now to have it labelled as suspicious is very concerning. How I'm going to get through the next few weeks until my post op results review I don't know.

@DivisionBelles
Those long nights of worry are the worst .
I got through them by telling myself that my worry changed nothing , that all worrying was doing was spoiling my present .
Be kind to yourself and let those anxious thoughts sit in a tiny place in the back of your skull !
I am off to oncology today for Herceptin Injection ( HER2+ ) and then onto breast clinic to have skin saver injected into to inflate further .

I had a phone call from Manchester the other day to say the surgeon wanted a f2f video consultation with me soon . We are so lucky to be able to do that or it would mean a full day off island and 14 days quarantine on return.
I don’t think she will have any news for me about reconstruction and am happy to wait. The skin saver has given me an ok shape under my clothes .

Ah . Orff I jolly well go . It will be nice to see the lovely oncology nurses .

Has anyone had to go about getting a second opinion over their treatment? If so, how do you go about it? I’ve had a lumpectomy and been discharged. But lumpectomy doesn’t show clear margins. No suggestion of having further surgery. I asked nurse to ask doctor, who said they removed the tumour but they “don’t tend to do that” - remove the further tissue. I asked nurse if that was common. She said she’d seen it once before for aDCIS. I have lobular. I spoke to both Macmillan and Breast Cancer Care, who think I haven’t been treated properly, especially with the type I have. I’m not sure what to do.

@daisypond
I think a second referral has to go through your GP. Under the NHS you're entitled to a second opinion and in your case, with the backing of Macmillan and BCC, it sounds as if it would be a v reasonable concern.

If you ring your GP and ask for a telephone consultation, they will be able to advise you and put it in motion.