Cancer support thread #82

[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

Yeah, I’ve had the ‘you’re so brave’ thing too, as though I’ve taken one for the team by having cancer!! 🙄

I always respond in the exact same way too, ‘Well, I just turn up and they do the rest…!’

@MrsPnut they’ve finally given me an NHS oncology appt for next Tuesday. I still feel like I will go out of my mind with worry over the next week so will call private hospital tomorrow maybe they can see me sooner, who knows. Although there is now an appointment it’s still not helping my anxiety - get that fucking treatment in me! There’s bound to be a delay between me seeing an onc and receiving treatment although it’s hormone treatment not chemo. I really do feel like this long wait is signing my death warrant. Have made official complaint and got local MP involved but none of that will help my DD when I’m dead. Im a
Horrible mix of absolutely worn out from fighting to get an appointment; really angry; and really really scared. Er but on a happier note well done @MissSmiley east west home’s best.

Hormone treatment should be pretty quick though @mowly77, if it’s tablets then they can do a prescription there and then.
Private took longer for my extemestane, my GP surgery got the letter days after me and then my GP took a week to look at it and arrange it to be issued.

Great news MissSmiley enjoy being home.

Enjoy Seville MrsPNut and yes a second trip is definitely needed. Infact a whole lifetime of trips is needed

Glad you have an appointment through at least Mowly and hope it will go to treatment fast. Its a rollercoaster throughout but at least when you are being treated you feel you are making progress in fighting the cancer.

Love to everyone else. I am just day after Pac and very tired despite steriods, think was the anti-histamine big dose, quite a few pains and sore mouth, chest pain but think indigestion and goes with paracetomol, they wanted me to go in but don't fancy A&E and pulse normal, temp normal, heart rate normal, no signs of blood clots I can see and eases when breathes in and getting air up and eases when get that so think its just meds pain / indigestion from sickness tablets. Flushed face but its gone. Not really any nausea or upset stomach. Have just been in bed half dead but have been able to make a few calls today and reply to e-mails and post on MN and DD just gave me her daily issues at 12am so 30 mins of that but lovely to help her. She did wake up poor DH who really needs his sleep, he had to take me to chemo on Monday so 4 hours of wfh to catch up on then Silkiecat started bleeding so he took her to vets only 15 mins and got uti injection, she is back to sunbathing but also woke up thanks to DD and decided a 12.30am breakfast from DH was in order, stuffed now and asleep but poor DH is awake. He also tidied the house today incase they call an ambulance. Though as long as I can avoid A&E should be easier rest of week though DD just mentioned she has had one sided headaches for 2 months, doctor is prescribing meds for migraine / anxiety but not sure if she needs checking out more. Could well be anxiety with mocks etc. She also wants me to organise a trip to Paris at Easter for her, so need to do her passport again and covid vaccine though bit tight on time.

@mowly77 Be aware that you will have to read and sign papers agreeing to the treatment and that you are aware of the side effects (someone will go over these with you - either the oncologist or the breast cancer nurse) so they may not release the targeted (CDK 4/6 inhibitors) treatment to you that day. Anything like the hormone blockers (letrozole, etc) can be prescribed without the paperwork, though it varies as to who you get them from (one trust it was through the hospital, privately I have to go through GP).

Also you will need to have bloods done before the start of each cycle and the first cycle you will need to have them done mid-cycle (2 weeks in) - just to factor that into your planning and to be aware rather than frustrated!

Even if the private hospital can't get you in before Tuesday, I would still keep an appointment with them as a second opinion. Depending on how many mets and where they are, the NHS/NICE driven one size fits all approach is rapidly going out of date especially for cases that are outside the 80% "average breast cancer" bell curve. Private care may have more leeway for more aggressive treatment, if warranted. They will also have better scheduling which will especially be important when it comes time to scan every 3 months to make sure the treatment is working -- you definitely do not want to be on the receiving end of 4 week wait for the NHS to read it when private could get it done in 2-5 days.

@MissSmiley Congratulations for making it home!!

@HerbalRefreshment I can’t afford to go private for treatment and I have no insurance because of previous cancer & BRCA2 status. I was considering trying to get an oncology appointment privately but I just don’t see the point now, I’m worn down. I have the appt on Tuesday and they’ve already said they won’t start my treatment there and then. I have to have another appointment with the chemo team who dispense it. God know how long that would take. I am now getting my GP to try to transition me fully to the Marsden because my my local hospital has been nothing but balls up after balls up. I’ll suck up the travel.

Great to hear how marvellous going private is however, guess I’ll just die then.

@MissSmiley home at last, hooray!

@mowly77 I am so, so sorry to hear of your recurrence. I am BRCA2 positive as well. And have had a recurrence 3 and a bit years after the initial diagnosis. Luckily the recurrence was still classed as primary BC even though the lump was in my lymph nodes and hadn’t spread elsewhere. I had double mastectomy with DIEP flap reconstruction (preventative), so have no breast tissue to speak of. It’s a bastard disease, definitely. Ever since finishing my treatment for recurrence I have been living, well, existing, in absolute terror of it coming back for the third time and my “luck” running out. I have been going to Maggie’s for counselling as the recurrence hit me much, much harder than the initial diagnosis. I do hope the transfer to Royal Marsden moves things along. Once the medical team puts a plan of treatment in action I hope this will give you the mental boost (I don’t mean this in a flippant way) to start moving forward for as long as it takes.

I phoned the BC surgeon’s secretary on Monday re: CT scan results as I still hadn’t hear anything. And finally she was able to tell me over the phone that everything is clear. That’s 6 bloody weeks of waiting!!!!!!

@balkanscot I’m so sorry to hear that too for you. And as for 6 weeks of waiting!!!!! WTAF And you’ve put it exactly right - the reoccurrence has hit me so much worse. Now it’s sunk in. I was just looking up maggies coincidentally

I think it would be worth trying to transfer to Royal Marsden Mowly as they seem excellent and leading in the UK and seem to also due a few trials and maybe worth seeing if there are any suitable for you. I hope on Tuesday they at least outline a plan so you can see what they would offer. I currently have counselling starting soon via Macmillan, was a bit of a faff to set up but its 6 sessions with BUPA paid for by Macmillan. Sorry to hear you aren't covered privately I am not either, my last job I was though I did find after I complained which you really don't need the stress of but it works the NHS treatment got much closer to private. I was even sent private on NHS for second operation and they funded a £3k test for me that normally you need to go private for plus I got a choice of 4 chemo regimes rather than the usual 1. Sent my mental health off a cliff to start with but now its improving. I am so very sorry its this difficult though it really should not be.

Glad you got all clear Balkan

Love to Herbal and everyone else as well. I am day 3 of chemo and came out of my deep sleep from piriton today and felt a bit better today with the steroids kicking in though my last one today and now back to zombie mode but did manage 30 mins exercise and felt invincible today until steroids wore off now back to reality and regretting messaging former best friend who started ignoring me when I got cancer as she has not replied. Still DH is great and I have a couple of lovely friends and some lovely new friends with cancer.

Morning everyone, I’m off for round 3 of the EC chemo today. Feeling a bit worried as it normally means 7-10 days of feeling poorly. But, this is the second to one round for me, last round on 14th April, not that I’m counting or anything…!

@Silkierabbit I’ll be the same as you tomorrow, bouncing on steroids! Sorry to hear about the problem with your friend, but glad you have made some new ones

Have a good day everyone, sending you all love xx

I thought I’d share with you all the vision of me in my lovely earphones headband in hospital. Waste of £15 really as apparently it’s de rigueur to put one’s phone on loudspeaker and then bellow into it All Day Long….
I’m still in on day 10, though the debulking op was “optimal”, as I’ve managed to develop a small pulmonary embolism. So that’s nice.

My third Zolendronic acid infusion seems to have caused a burst of bone and nerve pain in my hands and feet with a very painful right arm. I’m up early because lying flat in bed seems to aggravate it. It’s infuriating and stopping me doing stuff. It should settle by next week or I shall have to do something about it. On the plus side I’m halfway through the six infusions now.

@thereisonlyoneofme congratulations on your anniversary. Having been here nearly two years I have heard your ups and downs and am delighted for you at how things are going.
@Silkierabbit hope you are feeling at least tolerable and managed to get some sleep. One down and one less to go.
@MissSmiley glad you are home and hope the DC are making a big effort to look after you.
@balkanscot hooray for your results. Six weeks wait is shocking. See you next year?
To all waiting for results or to start treatment we understand. It’s the gnawing anxiety day and night while the world rolls by oblivious that I hate. @mowly77 I think I would be just like you if the bastard BC comes back again.

Assuming my stupid joints settle down I now have three weeks till I set off on my adventure. I have just got some sponsorship to defray costs which is exciting. I will post the links before I go. We will be fundraising for Macmillan Cancer Support and it will take up to three months. DH has decided to paint the front of the house before we set off

Love to all. Keep on keeping on!
Top

Just to flag - the Marsden in Sutton has a brand-new Maggies, the one in Chelsea does not have any Maggies services at all (and its a couple of week wait for psychological support services at the moment, whether you are private or public patient!). I haven't been to the Sutton campus but itll be newer and bigger than the maze that is the Chelsea hospital, although I believe consultants work across both sites.

Are Maggies the same sort of organisation as McMillan? We dont have Maggies locally its all MacMillan

"TopoftheCliff" I think you are tremendous with your adventures and activity levels ! I m only at the level of a short hotel break in various places with a bit of sightseeing but a lot of sitting !

bold fail! Can we have an edit button for Christmas !

@thereisonlyoneofme Maggies is very similar to Macmillan. We have Macmillan here but Nottingham has a Maggies centre.

@thereisonlyoneofme Maggies centres I would say are even better than Macmillan because they usually have a range of programmes on of various topics, have drop-in spaces if you are around before or between treatment, and counselling services in person.

Hi everyone, thank you for all your supportive words so far. Had a talk with my consultant today and they now need me to go for a biopsy because it has cancerous tendancies. Need to speak to my DR because i'm really not coping well at all. I just don't understand any of it as i don't even feel unwell in myself, whether i would or not i don't know

@AFB2022 I have never really felt unwell except for brief periods during Docetaxol chemo. In fact I am usually to be found telling the young registrar in oncology assessment that I can’t possibly be admitted because there is nothing wrong with me.

Do speak to your GP though, there are things they can prescribe to take the edge of it, and hopefully they can do the biopsy quickly.

Oh wow really? Yes i'm going to give them a ring tomorrow to see what they can give me to help.

Thanks TwoNoisy Hope the third round won't be too bad for you. I am doing the weekly Pax and its less extreme compared to the 3 weekly, the oncologist said on average its the same but less of the very bad days and less of the good days. So far had 2 half dead days with piriton, indigestion chest pains and pains and bits of nerve issues then on day 2 of bouncing off the walls with steriods and bit of indigestion, chest pain now much better but teeth feel like about to fall out as gums gone numb but much nicer to have energy again.

My youngest keeps eating all my chemo lollies, he is ASD, thin as anything but an ice obsession. On Monday I had 1 lolly out of 4, parma violet as I thought that would escape it and he must have eaten 3 in a row Monday night. Tuesday DH buys 3 packs more of lollies and I ask him for 1 today and DS has eaten all of them So now I have to be very fast ice lolly eaters.

Cat is much better and now a daily sunbather in this tropical 15C we have here now. but good to see her well again after her uti. The rabbit is bouncing over to the silkie all the time but the silkie is still cross with rabbit for gatecrashing her pen to eat all her hay and now when rabbit approaches she tells him off very loudly if she is eating food. No boys are stealing her food again. Spent all last night sorting EHCP changes for DS, council posted it 14 days late giving me one night to respond, deliberate ploy to try and give parents no say so they can't challenge it and get something useful put in but caught them. Luckily it was steriods night so was up all night anyway.

AFB2022 So sorry to hear need a biopsy and cancerous tendencies. I actually had felt fine until a few years pre diagnosis then became quite ill mid 40s and got diagnosed at 48 but the oncologist said unrelated and cancer does not normally make you feel ill. They have picked up an adrenal issue like adrenal insufficiency / Addisons though so may well but that but yes its very strange that you can apparently never feel ill apart from treatment effects. I actually had finally started to a lot feel better when got diagnosed, bizarre and even more odd is I feel much healthier than normal on steriods. It is such a scary time waiting. I found trying to pretend not happening and distraction best like listening to music, watching easy TV but so hard. If it is cancer at least once they start treatment it feels like the fight back has begun, still awful emotionally but at least treatment you feel you are fighting.

Top Hope can get pain sorted and get on your adventures before too long.

MrsWooster Hope the PE gets sorted soon.

Love to everyone.

@AFB2022

My ovarian tumour would be described as 'having cancerous tendencies'. It was a Borderline Ovarian Tumour. They used to be called Tumours of Low Malignant Potential. It meant that the cells weren't quite normal but not fully developed cancer cells. Most never change into cancer, but a small percentage do, so they treat them differently until they're sure. Usually, they just remove tumour and monitor for a bit. I had a needle biopsy - 'inconclusive' - and surgery. That was 7 years ago. No further problems. No connection with the colon cancer I developed later.

Different cancers develop differently. Did your consultant say what sort of cancer they thought it was? I know it's attached to the bowel but have they ruled out something Gynae?

The upshot of all this preamble is try not to get ahead of yourself. You've had an MRI and a CT and they're still not sure, either way. Have they done blood tests, too? The biopsy will help, but might not be 100% certain either, as with me. In my case, it was only after surgery that the pathologist was able to make a firm diagnosis.

I don't want to raise false hopes. As soon as someone says 'cancer', it's natural to think the worst and it's a horrible situation to be in. Some medication will help with that. But it would have helped me if I'd known what I do now at the time.

Oh wow i've never heard of that before, my brain just instantly thought thats it i've got cancer and they just want the biopsy to confirm. They have no clue, all they know is it looks like its attached to my bowel. Gynae was my first port of call because the ultra sound guy said it was a fibroid. Gynae sent me for the MRI and after looking at it said no everything is fine there and said its a gastro problem. I have been having bloods since last September when i spoke to the DR after feeling tired a lot but i have a 3yr old and work 12hr shifts so was expecting everything to be fine or low iron. My CRP came back high but not overly high and they said to repeat in 3 months so they can't be overly concerned. I had repeat bloods in Dec and still the same so i was booked in for examination. At the examination appointment the first thing the DR said to me was no point in taking more bloods and they are putting my high CRP down to infection and having covid just after i had Dec bloods. It was only during examination that the DR felt the growth and said it was probably a fibroid or cyst but still said no more bloods except the one for ovarian cancer which came back in normal range

Just a thank you for being there when I was really anxious pre mammogram/ultrasound. I can scarcely believe it as there is still pain, but apparently all looked normal.

Wishing everyone here all the best x