Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

My first chemo done today - left home at 6,45am and got back at 6.30pm. Absolutely knackered and bp through the roof but at least the first one is out of the way and I know what to expect now.

We sound similar @mowly77 - I've put research papers and updated guidelines in front of consultants but they're not interested. Paying at the Royal Marsden helped, but it feels like they're overstretched too and it's not realistic for me to be treated there distance-wise, but if I was closer I'd go for it. I too am sick of having to trawl through research papers. It's the time but also the emotional impact as you're not sure what you're going to find. I'm 80% sure I'm going to refuse radiation as it's not effective for my stage and grade (endometrial), it only adds 1% over chemo, but the NHS still recommends it because they just go on the stage, but most women in my stage have a much higher grade so it's not representative for me. My consultant pulls faces, and the CNS just try to persuade me that it's better to have it. Going against them is scary though. Also sounds tough for you having to go into chemo still feeling sick

Gosh, that's a massively long day, @bodiddly . Do you have a long journey, or was most of that actual hospital time? Best wishes for chemo next steps to everyone else, and keeping fingers crossed for no more admin balls ups.

Really interesting to hear everyone's reflections on the trust issue. I don't know quite how to say to my consultant that I want more information and want to be more involved in decisions. I tried to ask for more detail about some of my biopsy results and he was a bit dismissive - also his English isn't completely fluent, so there's a bit of a communication barrier there. Still, I expect I am about to be referred on from surgery to oncology, so there's a chance for a new relationship.

Have started the day with a brisk walk in the weak autumn sun - am a bit depressed that my physio guidelines say a gentle walk for 30 mins 5 times a week. I was running (slowly) and swimming regularly before diagnosis, and I know it helps my mood massively, as well as the physical benefits.

@dotty2 Obviously you need to be sensible, but IME physio guidelines are written with the less fit patient in mind, so I just do my own research and what feels right for my body, starting gently. You do need to give yourself time after surgery though, I just walked for three weeks after my hysterectomy, which did feel frustrating but I didn't feel ready for anything else) then started the gym gently (wasn't allowed to swim because of infection risk) and yoga in week 4. Now I'm not swimming with the chemo because I don't want to lose anymore of my hair, but I do miss it, I was swimming in an outdoor pool at a private gym but had to give up membership because of cost, but even swimming in the local leisure centre would be good. When I've lost enough hair to need a wig I might go back to swimming.

@dotty2 I left home at about 6.50am for an 8.25am appointment - journey is a short drive, a train and a tube. Not so bad at the moment but I can imagine it might get harder - going to cost over £30 a week minimum though and I've got to go twice next week - expensive business.

How's everyone else doing today?

I’m sure you can claim travel expenses back, but I can’t remember from who! I’m sure someone else will know more.

Hi,
I’ve been lurking this last week but I’ve got a question for those with OC……I have been sent for testing due to having all the classic symptoms and family history of OC and endometrial cancer. My CA125 came back as normal today. I know it doesn’t rule cancer out but I’m wondering if anyone else with OC had a normal CA125 count? I see my GP again next week and will hopefully be referred for a scan now. I’m trying not to Google anything as that just ties you up in knots.
Thanks.

Some women can experience a false negative result on a CA125 but I’ve not come across any on any forum I’ve been on. I only know because my gyne-oncologist told me. Personally my own reading was only just above normal.

As above, some women don’t seem to have raised CA125, I’ve seen a couple on the low grade forum but the vast majority are raised. My own was 420 on initial bloods.

Well it's my turn to be cross now, as my results appointment for next week has just been cancelled - via an automated message on my NHS app. Turns out the results aren't ready, so it will be a whole extra week before I can be seen. I guess these things happen, but it feels really crap and miserable to have to wait over 3 weeks from surgery for results.

Can I ask how long everyone waited for their operations? I'm still waiting on a date, apparently theatre is full so they are having to squeeze me in. It's been about 5 weeks since my scan, and I gave consent for surgery about 2 weeks ago? If it is cancer I need it out of me asap don't I! Just want to know a date so I can get organised!

I'm on the ovarian cancer pathway, don't know if I have cancer yet though. I have lots of symptoms and a large 7by5 cyst. Ca125 is in the 50s so doctor said usually with ovarian cancer it's in the thousands but I'm still worried

I’m not in the Uk but from the day my gigantic cyst was found till the day I had surgery it was two weeks. I was very impressed as I live in a developing 3rd world country and whilst we don’t pay any tax or the likes the government has built us a fabulous health service that quite often chokes me up when I think about the progress made since I’ve been here.

Hi. Mucinous Ovarian Cancer is one of the cancers that doesn’t actually show up very well with the CA125 and I really do want to urge you to not listen to your DR. Many a woman has been sent away from a surgery because a GP didn’t know enough about OC to understand very much about it. I had a diagnosis of stage 1a Mucinous with a just over normal Ca125 result but I also had a gigantic cyst weighing about 6 kilos.

Im sorry you’ve found yourself in this situation. We all know the waiting is absolute agony.

Thanks, when I have my surgery they will remove the cyst (and ovary and fallopian tubes) and they said they will send it to pathology (?) and 2-3 weeks after that we should know if it's cancer or not

@BonnieBairn my CA125 was normal (at 15 from memory), and my OC was stage 1a so hopefully all removed.

@Decafflatteplease my hysterectomy was 8 weeks and I was originally told 4-6. Too many bank holidays (I was diagnosed beginning of April) was the excuse I was given. Trying to get them to give me a date was really stressful. I'm self employed and actually could have earned another month's wages but because I kept thinking it was about to happen I didn't feel I could take on work.

@Decafflatteplease i had my scan 5th may and debulking 14th june so about 6 weeks.

Thanks ladies for your replies. It’s such a rollercoaster all this waiting. I’m still
waiting on a scan but hopefully my GP will
have an update when I see her next week. I read a couple of research papers which suggest around 50% of women with early stage OC have a normal CA125 reading. And that it is a very basic marker for gynae cancers.

@Decafflatteplease - mine was a day short of 3 weeks from diagnosis to surgery. Looking at the experience of others here, I see I was very lucky and should probably be less cross about the results delay overall. Mine was a lumpectomy and node clearance, which I guess is a smaller operation, and was done on a Sunday as they had put some extra surgeries in to clear backlogs, but they were limited as to what they could do in those slots, as don't have all the facilities available. It's so hard waiting - I hope you see some progress soon.

My hysterectomy was between chemo 4 &5 it was ment to be between 3&4 but it was delayed because they were waiting for a bed

It’s good to hear we have lots of energetic people trying to stay active during treatment. Last time round I kept getting told off for doing too much and went cycling much too early after surgery, shouldn’t have done weights with a PICC line etc etc. after it was all I spent a whole year working hard in the gym and on my bike to get fit again just in time for the new diagnosis. I am sure my fitness is why they are giving me dose dense treatment at 62 . It’s just a shame I’ve got to start all over again from the beginning. I will try not to break my leg this time though. Mother in law’s hip fracture is enough to be dealing with.
Today I purged her kitchen while DH vacuumed the house. He is sleeping there and his asthma is getting bad with all the dust. I miss him too! we might get a respite place for FIL next week. Fingers crossed!

Regards to all having treatment and waiting for things. At least I have forgotten to worry about my MRI scan result. I shall chase it on Monday.

Top x

@bodiddly you can surely definitely claim that large travel expense back; that will be lots as it goes on. There is also (free) hospital transport itself if you start not to feel well enough for the travelling, & driving yourself (?), but as you can imagine ... PITA. You may have to wait even longer to be taken home, for example, which in your case does not sound ideal. Try asking your cancer nurse, the receptionist (wealth of knowledge), or Macmillan? Saw an occupational therapist from my local hospice this week & she told me there is also a cancer charity that runs a lift service for volunteers & you pay a nominal fee to join. She's going to find out details for me. I'm sure there will be similar in your area.

Excellent to everyone exercising! I've become so unfit with 15 rounds of Pax that now I'm in a catch 22 situation... I know I would feel better physically and mentally if I exercised but I'm too sick & tired to make that first step back now. I used to swim a lot so can't wait to get PICC out; and yoga, but it's all fallen by the wayside. Will try to walk more & build it up but honestly I'm just waiting for chemo to be FUCKING OVER NOW PLEASE. 16 done yesterday. 2 more to go if I manage it. But depending on this week (awake at 4am today feeling like death; stomach & bowels aflame) it's not looking good, frankly.

Love, luck & light to everyone else, from the new & worried to the older hands & worried.

& as we're nearly at capacity thread continues here:

www.mumsnet.com/talk/general_health/4640409-cancer-support-thread-84-gently-crunching-our-way-into-autumn

Was in hospital last week for a Crohns flare. Surgeon drops by and starts rattling about ‘that nodule we saw in June 2021 in the lower left lung has expanded significantly’
Me’What fucking nodule?’
Seeems I have lung cancer and not only has anyone forgotten to tell me but they’ve forgotten to keep an eye too.
First appointment tomorrow but it’s unlikely to be anything other than a primary bronchgenic.

@Gilead Very sorry to hear that. Just a heads up that we are all over on thread 84 here, so come and join us and you'll get more support there. I am at the end of the beginning with my cancer journey (post-surgery, pre results) and have found it helpful to share and vent.