Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@PollyCreo sympathies, I had a similar situation after my hysterectomy, they told me originally that they thought it was early stage and that it would be a hysterectomy, and then it be very little chance of recurrence, but when they did the pathology, they found a little bit had spread to my ovaries as well, and were recommending chemotherapy and radiotherapy. It was a massive shock as I kept on telling me “This doesn’t happen often” - yeah, thanks, great help! Long story, in the end, I didn’t have the radiotherapy, but I did have chemo. It was horrible, but I did get through it, it was nearly a year ago now and I wouldn’t say I’m quite back to normal, but I am almost. If you do have to have chemo, there’s lots of tips on here for you .

@PollyCreo I completely get this too...you're not awful at all. I have a lovely relative who keeps calling me and asking me if I'd like her to come and sit with me. ABSOLUTELY FKN NO WAY (thank you for asking though). And another friend who takes my hand and clasps it to her (non-cancerous) breast whenever she sees me and tells me to stay strong. It takes everything I have not to recoil and run away.

In other news, I think my eyes have finally stopped continuously watering. Now it's a couple of random tears every now and then. So much more manageable and thank you for your advice.

DD1 is just back from an amazing month inter-railing, DD2 is delighted to have her back and so today we're all out for breakfast. When they were little they really didn't get on, but since covid and now they're in their early 20s they are best friends and very funny together. Then off to the Victorious festival in Southsea on Sunday. Happy Bank Holiday weekend everyone (or at least to those of us in the U.K.)

@PollyCreo Sorry to hear that but wholly understand. It is exhausting. I too dread certain phone calls checking up on me.

Sorry to hear that @PollyCreo I also can't stand the niceness sometimes! I had a mastectomy and was told if no lymph involvement no chemo would be required but of course when it came down to it, there was no lymph node involvement but I'm still having to have chemo due to the tumour size. It was a shock to me too! We attended a demystifying chemo session run by macmillan last week, if you get the opportunity go along as it was very useful and interesting!

Lovely to hear about all the great exam achievements :)

Those with eye issues, I find Rose Water is fabulous for itchiness and soreness, not sure if it would sort out the watering/leaking - when my DD was little she used to tell me her eyes were leaking rather than watering :)

I totally get it @PollyCreo just when you think you are nearing the finishing line you get told you “just” need a course of chemotherapy or whatever to be on the safe side. After cancer no 1 I had to accept I had a second cancer that meant back to the beginning and start again, then when I thought I had finished that round they suggested Cape as an insurance policy. I was raging! Sometimes the well meaning sympathy of friends is just irritating. Don’t feel guilty just have a turn in our Virtual Rage room smashing up imaginary crockery. Or if you don’t feel like that just wallow for a bit. This too will pass.
DH alive and happy he has finished his big event. We will be reunited on Sunday which I am looking forward to. I may even make a cake

Hello! Had a name change in honour of my post surgery jabbering.
Quick question for any longer timers - health anxiety. Does it stop?
I'm horrendous at the moment. Get a headache and convinced it's a brain tumor. Ridiculous.

Hello @SataumaMeddler - I can't answer for whether it ever stops, though I know others say it does lessen over time. I am a year on from a BC diagnosis and it's awful for me at the moment. I have just this morning convinced myself that I look slightly jaundiced and therefore must have liver mets. I am genuinely struggling to concentrate on work and domestic admin - everything takes me twice as long because I am spending so much mental energy on worrying. So my sympathies.

I had it really badly earlier in the year @SataumaMeddler (about a year after diagnosis) but it’s gone for the moment. I guess it will come back nearer scan time. I’m just focusing on being as healthy as I can (physically and emotionally) as that’s something I can control. When it hits though it’s hideous.

@SataumaMeddler @dotty2 @SierraSapphire On health anxiety, it has become a way of life, with ups and downs for me. I had lymphoma 25 years ago and really struggled with health anxiety for a long time. Work and keeping busy with life and children kept it at bay mostly but it was always lurking quietly in the background, with periodic spirals, though generally around check up times once a year.
This time with BC (caused by radiation to chest for the lymphoma all that time ago), it probably saved me as I lept to the GP the same day and kicked up a fuss to get seen asap by a consultant. As a result, it was caught earlier than it might have been had I been more relaxed about symptoms. I expect hower my health anxiety to hit the roof once treatment ends. How can I trust that this will be the end of it this time? It is just something we need to learn to live with and try to distract ourselves from. It can be done, but has its moments. And, if in doubt, better get checked.

15/18 for me today. I'm tired & a bit irritable & the girls are very talky today. Main topic is, as usual lately, The Eras Tour.

The poor lady next to me was sat from just after me, and was expecting to wait a good while longer after I left, for her chemo to be consented. It sounded like there's only the one registrar available & he was with a patient so goodness knows how long she'll be 🤷‍♀️

Out of interest; it sounded like she's having several different types of chemo - 3/4 names were mentioned. I wonder how they decide who gets what? Is it a case of, you're curable so you can have everything, but you're not so you can just have the one 🤷‍♀️ Sounds a bit callous but did make me wonder if I'd get more options if I were more treatable/curable 🤔 or, is just the one, followed by Prolia and ribocyclib better long term for me? Maybe I'm just feeling that way out today!

Anyway, dinner out was good! We came straight home & now I'm considering a nap. Although then I suppose I'll probably sleep even worse than the past few weeks.

Definitely that way out 🙄 I've just been grumbling at the few pots from last night/this morning, and about the random stuff scattered about (much of which is mine from crafting endevours🙈)

I went for that nap & now going to get a shower. Feel much better now. Although still ignoring the pots that are there to be done, and the stuff 🤷‍♀️ I have made myself a note of the things I need to take to town tomorrow though - we're picking up dd2's specs and dd1's having her eyes tested. Also booked mine at the same time to save an extra trip but they want id for me & can guarantee I'd forget something!

@dotty2 @isaxx @SierraSapphire thank you! There's actually comfort in knowing it's a normal response! Definitely going to try and eat better and move more though!

lucysmam:
Out of interest; it sounded like she's having several different types of chemo - 3/4 names were mentioned. I wonder how they decide who gets what? Is it a case of, you're curable so you can have everything, but you're not so you can just have the one 🤷‍♀️ Sounds a bit callous but did make me wonder if I'd get more options if I were more treatable/curable 🤔 or, is just the one, followed by Prolia and ribocyclib better long term for me? Maybe I'm just feeling that way out today!

This sounds like the kind of thing I find myself wondering all the time.

But my impression is that they'll start with whatever the standard regimen is for the kind of cancer the patient has and then tweak it according to how well it's tolerated and how effective it's being. I do wonder though whether, if there's a chance of "curing" or getting rid of the cancer they'll really blitz it with chemo to get that done whereas if the treatment is palliative they'll go easier to get better quality of life, since treatments will be ongoing.

However this is really just conjecture on my part based on what I think I'm observing 🤐😀

@Scandimandy Just wondering what size your tumour was.

Atreus:
And another friend who takes my hand and clasps it to her (non-cancerous) breast whenever she sees me and tells me to stay strong. It takes everything I have not to recoil and run away.

Oh my dear Lord. I'd have bitten her.

On blitzing vs lighter treatment, I too wonder. Mine is supposedly intended as curative treatment, yet I will have only had mastectomy and 4 rounds of TC. No immunotherapy, no neadjuvant chemo, no radiation. Others on here with roughly same diagnosis seem to have had almost everything. Does not fill me with confidence that everything possible is being done. The justification I got was that there is a maximum lifetime dose of chemo and radiation you can have. So, given my treatment for lymphoma 25 years ago, they are cautious of long term consequences. Assumes there will be a long term!

I might be wrong but I thought that they looked at the cells during biopsy and then along with staging that confirms what treatment to offer? So they look at whether the tumour is resistant to certain types of treatment and then staging affects the treatment as they consider effects on whole body and quality of life?
This is from what my oncologist said when MDT were meeting about treatment and what a friend was told about her breast cancer being resistant to chemo.

Hi all, is there anyone here who's had abnormal MRI results after cancer?

I had a brain MRI to check why I'm having headaches (after Stage 3 ER/PR+ HER2- breast cancer in 2020).
The brain is fine (and now I have written proof that I have a brain! Bonus!). But there is an abnormality in the bone at the base of my skull. It's confined to the bone marrow and doesn't have the "shape" of a typical tumor. The colour is apparently wrong for an active metastasis (it is white rather than black, I think they said?). It might be a type of sarcoma instead. BUT then they reviewed old scans and saw that there was a slight "something" in the same area in a 2020 scan. My oncologist says that if this was sarcoma and it was already present in 2020, it would be a heck of a lot bigger and not just confined to the bone marrow three years later because sarcoma is aggressive.
Plus, I had a PET CT in April 2022 where nothing lit up at all.
Meningioma was also mentioned, but declared unlikely as this seems to be in the marrow, not the meninges.

So, what the fuck heck? Does anyone have any experience of a similar situation that turned out well?

I'm waiting for results from a repeat PET CT now, but I'm not coping. I keep looking at DS8 and imagining how he'll grow up without me, and it's horrendous.

I get the whole health anxiety thing. Some days I wake up and it’s a thumping noise in my mind. Other days it’s a background hum.

I’m considering some counselling but not sure if it does anything really. Other than making you realise you are normal to have these fears.

I’m going a lot better at the moment. 4/15 of radiotherapy done and I’ve been able to do a couple of days work the last two weeks.

Not very exciting but I’ve weeded the flower beds on both sides of our little driveway and I’m feeling much happier now all the grass has been pulled up.

Wishing everyone a good Saturday! :)

Does anyone know what to do when the Breast Clinic is closed for the weekend and Bank holiday Monday and you won't be able to talk to your nurse until Tuesday when they open again? My swelling under my arm getting bigger and more painful day by day and now my arm doesn't hang down properly because of the size of the swelling. It's about the diameter of a grapefruit. I saw the nurse 2 days ago and she said it's healing ok but I'm so overweight how can she tell? I can't put my arm down to sleep or do my exercises.

I’d probably got to A&E @1Strawberrycat - I can’t imagine 111 would tell you anything else.

@1Strawberrycat I too would head to A&E, sounds like it needs checking over 💐

@1Strawberrycat i also think a&e unfortunately, having left an infecting on my surgical wound (my husband and I stupidly hadn’t realised it was infected) and been sent to a&e by the district nurses I would just get down there and get yourself seen to. I don’t think it’s worth the risk of waiting until after the long weekend.

Whew, just catching up on the thread!

@Top, glad your husband finished his event safely and that you've had a lovely time in France.

@lucysmam back to work this week went well, felt so good to be back in the office but I feel like I have taken a step back in terms of tiredness! I haven't, really, it's just because I'm using my brain and having to interact with so many more people so bound to be knackering. Your Hansel and Gretel are looking great!

Yep, health anxiety is something I'm expecting I will carry with me for a long time. To be honest I'm worse with the blood clot issue then the cancer - every twinge, bit of pins and needles etc....

Having said that, I've stepped away from the cervical cancer FB page I was on as I don't think that was helping with the health anxiety. Whilst I'm stuck in limbo waiting to see if treatment has worked fully, there are a lot of posts about reoccurance/treatment failure...which isn't surprising as they are probably the people who need the most advice and support. It was just giving me a constant feeling of impending doom so I decided to take a more what will be will be approach. Well, I try to - some days are more successful than others!