Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@HauntedDishcloth I'm having lumpectomy next week. I have to isolate before but only for 3 days. I will be tested 3 days before and the day of surgery. No one has mentioned any more social distancing to me other than that.

Coming on to the thread. Had BC 12 years ago. Since last spring I've had an on and off discomfort in my lower left abdomen around the end of my c section scar. It came on as an agonising pain during a run. It then went completely. I thought it was wind as it went after a few farts! I've not run since but I keep getting the discomfort after yoga- not pain.

Have had an ultrasound, nothing wrong with my ovary or c section scar.

Did yoga fri - hip exercises. Now I have an ache in the front of my thigh- and the stomach discomfort is back. Hip is a bit stiff. Came on yesterday but was fine overnight.

I finally gave in last night into the thought this could be secondary in my hip. My oncologist signed me off ten years on and said it wouldn't comeback as secondary due to how aggressive it had been - it would have shown itself earlier. But she's not infallible.

I'm a single parent and just so so sad. I'll call the open access tomorrow and get an apt.

My only hope is that it's something bowel related because of the position and family history of diverticulitis. But although a bit farty, I don't have anything else and it doesn't explain the leg pain and hip stiffness .

@JeanLannes Glad you enjoyed it, it’s rare for a book to stay with me so deeply after reading it but that one did.

Surgery wise - I had to isolate from my Covid test onwards so for me, Sunday lunchtime to Wednesday am. I had my drains in for a week but partly because that was my first wound clinic appointment after surgery.

@HauntedDishcloth I had to isolate for 2 weeks before surgery(hysterectomy) but I wasn't told to isolate afterwards.However I didn't feel like going anywhere so that took care of that.

Oh and I'm also waiting for a womb biopsy but apparently the lower stomach pain is unrelated . Much less worried about that.

I asked my oncologist years ago what I did wrong to get cancer - I was early 30s and she said it was too young for lifestyle choices to have any impact.
I firmly believe it's (bad) luck of the draw.

Got myself into a google frenzy last night hence am tearful and panicky today. I had to force myself to leave my phone downstairs when I went to bed and the only thing I've read today is the open access leaflet which is a little reassuring I that it talks about night bone pain and I definitely never have the discomfort overnight .

I had chemo and herceptin when I was treated, plus mastectomy and implant which has always hurt but I'm too wimpy to have it out .

@JeanLannes I had counselling for PTSD and anxiety a few years ago and it was life-changing. It is important to find a counsellor that you click with and can trust. You sound similar to me in that I had anxiety for years but was good at coping and hiding it. None of my friends would have guessed I was anxious. I had the counselling for a traumatic experience and it very quickly became clear that anxiety was having a massive effect on my life. It did take me a while to be able to be fully vulnerable with the counsellor but once I was able to it made such a difference. It changed me a lot, and in a good way, and made a massive difference to lots of different aspects of my life.

I'm hoping that I will be offered some counselling once I've recovered from surgery just to process everything and figure out how to manage my anxiety in the future.

The CBT on the other hand I didn't get anything out of. It was online though because of covid so perhaps that made a difference.

@APeakyBlinder hello. Sorry to hear about your mum.. We are not experts here so I suggest you or your mum ring the Macmillan or the Breast Care Now helpline and ask them your questions. if they aren't answered on their extensive websites. Keep off Google it just frightens you and is inaccurate.

The weather here is appalling. It has been raining for about three days on and off and all the things I want to do are outside. My DB is about to go away for 2 weeks so I think I will be on DM minding full time. I can feel my cheerful mood slipping and I have a BC clinic appointment next week to check out a post op lump in my armpit which I am trying not to give headspace to. I am frantically doing my French language homework as it keeps me occupied but why does everything have to be so depressing? I need sunshine and a day out of the water!
@feelinggeriatric welcome to the thread nobody wants to be on. You know you shouldn't Google it only leads to trouble! You are right to get checked out but it is much more likely to be arthritis or something tediously common. This is a time for The Power of Now when you stay in the present and don't run ahead planning your funeral. Keep busy and we will distract you while you wait. How old is/are your DC? Did you have them before BC?

Right back to the subjunctive tense! Il pleut encore...

@feelinggeriatric could it be adhesions from your caesarian? I had pain come on really suddenly and it went on for months. I eventually got referred to a gastro consultant and they did a CT scan and couldn't find anything. Diagnosed as adhesions from the surgery scar, which can come on years after the surgery.

I often get achey hips after yoga and if you are having pain in that area it's really likely that your muscles around there are tensing up, which could also be causing the hip and leg pain.

Googling nearly always causes me massive anxiety.

Can I ask how bad is the pain from the implant? I'm having mastectomy and implant done this week and having had adhesion pain in the past and also chronic nerve pain in the past I hope that doesn't mean I'm likely to end up in more chronic pain from this surgery. Not that I can do anything about it as there's no other option!

Will I need to wear a face mask the whole time I'm in hospital? I will have my own en-suite room (lucky I know). I hope I can take it off when I'm by myself, and especially for sleeping?!

Hi everyone - how are you all?

Finally out of isolation and my appointment is tomorrow 🤞🏻

@TopOfTheCliff thank you yes I learnt to avoid dr google the first time around but last night I fell off the wagon!!

Dd is 12. Amazingly, it's down to her I'm here, she stopped feeding when tiny newborn & I found the lump...

@JingleJum yes last time I chatted to the GP she suggested c section adhesions . Thanks for reminding me, I'd forgotten that. I'm also thinking about the bowel possibility as at my first scan the sonographer said it was right by my bowel, so have cut out dairy and am cutting down on caffeine and upping peppermint tea to see if it helps at all, and have some probiotics on order . I've also reminded myself when it happened the first time I was convinced it was trapped wind because it relieved after several farts !

Yes I have a tight left hip which I suppose could just be that , tight , and so yoga makes it ache. I also have a very specific pain in my left knee which I think is arthritis , having been down the 'do I have cancer in my left knee' some years ago route and had it scanned and the consultant just said it was a knee for one my age !! So maybe that whole side is just a little arthritic . Something to hold onto anyway (can't believe I'm wishing for arthritis !!)

I'm giving up my yoga home practice and joining a beginners Pilates class with an instructor who knows my issues so fingers crossed this stops the constant reoccurring ache.

My implant just aches. I have to wear a bra as soon as I get up and prop a pillow under it when I sit in bed reading . I was terrified of having an GA to remove it but now have one forced on me due to the womb biopsy (this also scares me re bone fear as I cannot tolerate my cervix being touched, the pain is too much, so I worry about that). But after this GA maybe I'll be able to get myself on the waiting list to have the implant removed, long wait I'm sure as it's not urgent. It's actually a very simple op to remove it.

I think it's upside down or back to front or something. I very much suspect a registrar not the surgeon put it in and it's over a muscle. I had a few procedures done by the registrar and they were not good. But I am just one person and I'm sure it's fine for most people. It's also been in 12 years , I can't remember it not aching but it probably didnt to start with.

Feel a lot better for writing down my fears thank you all. Will stay on the thread to update and also as I should get a date for my womb biopsy soon as it was going through as urgent .

@JingleJum sorry just re read your post. I it's definitely not even slight pain. Just an ache bit like when your boobs ache a lot during pmt - but it feels like it needs support . It's fine with bra on most of the time. I just can't spend any time bra-less. Now I'd just go flat but I don't think I would have been in the right head space to do that straight after mastectomy .

Also i had counselling at my hospital cancer unit after I finished treatment abd it was absolutely brilliant and really helped me though that really hard but when you finish all the treatment. Would highly recommend a specialist cancer counsellor .

HC I was told to isolate for 2 weeks before OC surgery and no-one said anything about afterwards.

Hi @JingleJum I think I only wore a mask when I was in for chemo and radiotherapy not for surgery. The staff wore them though. Hope that helps!

JingleJum when I'm in as a day patient in a private room I don't wear my mask except for consent for my procedure and pre assessment by the nurses. I don't wear it in theatre or recovery.

Last internal radiotherapy tomorrow. Then that's the end of treatment and start of monitoring. Does anyone know do I just get cut loose at that point? Or what might happen? I've been at the hospital pretty much everyday since 29th March. What do I do now?

@BadEyeBri I had follow ups for ten years. But ending treatment is a difficult stage and the point at which counselling can be helpful x

Thanks @feelinggeriatric that's all reassuring. I have had breast pain for 6 months+ so hoping that once I'm healed there will be less pain than I had before.

When I had my caesarian I had a registrar stitch me up (I could actually hear the consultant guiding her how to do it) and she left a big gap between two stitches that ended up getting infected and now that area is totally numb. I know doctors have to learn somehow but I don't want to be the guinea pig!

The consultant at the breast clinic is the one doing the surgery and I really like her and trust her so feel sure she will do a really good job. I'm really lucky to have health insurance through work. Not sure I would even be diagnosed if I had gone through the NHS system.

Keep telling yourself that there are lots of non-scary reasons for your pain. It's worth getting it checked out but in the meantime remember that there are lots of non-serious things that it could be. Once I knew my pain was adhesions I could stop worrying about it and even though its still there it doesn't bother me that much because I'm not panicking every time it hurts.

@Topofthecliff thanks re. masks. I didn't think they would make me wear one constantly for 48 hrs but you never know!

@BadEyeBri I've got an MRI scan a week on Monday which is slightly delayed due to surgery and then 3 monthly follow up appointments alternating between gynae oncologist and gynae surgeon.

@MrsPnut cheers m'dear. I'm feeling a bit wobbly that treatment is stopping but I've no idea of what's going on inside. 🤷‍♀️

How is your chemo going? How you're handling this is fairly kick ass. I know we all don't have much choice and just need to allow the medics and surgeons to do their things but your indomitable spirit really comes through all your posts. If I've not said it already thank you for all your help. It's meant a lot to me 💐 and a big unMumsnetty Irish hug x

Hi everyone, I hope you're all enjoying this soggy weather?

Does anyone have experience on FEC-T chemo?

I've found out that's what I'm having, I think due to almost being triple negative?

Last week I had various appointments each day, and this week the only appointment I have is an MRI on Wednesday, so I've being trying to plan things to keep myself busy

I should start chemo the following Weds, I have no idea what to expect. It's a terrifying thought though. I partly just want to get it started just so I know how I react to it all, which seems ridiculous.

I'm mostly scared about how my kids will react to it all, I want to at least be able to pretend it's OK for their benefit.

@BadEyeBri I know it feels odd when you get to the end of such a fast paced brutal treatment, and then it just stops.

I was really lucky when I was having treatment that a fabulous mumsnetter who had been on one of these threads a while ago saw my post and private messaged me. She gave me so much help and support through my treatment that I feel honour bound to pass it on. If you haven't been through it then it's hard to imagine the intensity of all the prodding and poking.
So thank you for the hugs and flowers, I do tend to approach everything head on and my force of will usually sees me through, even though there are wobbles along the way.

My chemo seems to be going well this round, no nausea and have been out and about most days. I'm on my own tomorrow because DH is going into the office but apart from a trip to the post office, I am planning to lounge around in bed.

@NogbagTheBag I started FEC-T last Tuesday. I'm having 4 rounds of each on a three week cycle.

@MrsPnut It sounds like your are coping well with the chemo so far, that's great news, long may it continue!

the coping that is, not the actual chemo, obviously the chemo can do one along with the cancer.