Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

@WrenNatsworthy

Your friend sounds like she was trying to signal her own cancer 'credentials' in having some experience in dealing with cancer. People get themselves tied up in knots sometimes and perhaps she was worried that the nurses would think that she had no business being there. Or maybe she was trying to suck up some empathy a bit like a grief vampire. I work in a shop and it's very obvious that I have cancer but customers quite often regale me with their horrific cancer stories and I generally think that it's because they want to empathise or they think "oh look someone with cancer, I'm going to off load on them because they'll understand".

@WrenNatsworthy I totally get your frustration with your BF.
I obviously don't know your friend personally but unfortunately there are some people out there that want the attention to be on them.
I have a few of them in my life. I try to ignore it but sometimes I just want to shout " here have the attention and take my cancer too while you're at it".

@SewingBees I'm currently going through ill health retirement.
I'm taking mine as a lump sum though which I've been told will be tax free.
I have considered all my options and for my children the death in service benefits would have been better but along with my manager and occupational health doctor I don't trust them to not terminate my contract before I die.
Plus I could do with some money now.

@GoldenDog1 I suspect I too will have to take ill health retirement eventually, but if I can stay employed, even if I'm not getting any sick pay, then the death in service would be substantial - double the value of my pension. But like you I may find that isn't possible. Time will tell.

I had forgotten that ill health lump sums aren't taxable up to a certain limit, thank you for that reminder.

@WrenNatsworthy I totally understand your upset over your BF, I would feel the same. I go to an online board game social group which I joined in lockdown. It has nothing to do with cancer and although everyone is aware of my diagnosis, it rarely comes up. One lady and I used to private message generally and she told me she was having a UV light therapy for her psoriasis on her back in the upcoming weeks under a dermatology consultant. She said she'd researched it and seen it was, in some cases, used to treat skin cancers which had alarmed her but her consultant had reassured her that it was effective for her psoriasis. At the next online meeting, when we were all saying hello and asking how each other were, she announced she was 'starting chemotherapy' and of course, everyone was really sympathetic and shocked. She ran with it and said she was most worried about losing her hair! She didn't have any symptoms of cancer and wasn't having any investigations yet revelled in all the attention which upset me terribly, especially as being on the camera, I was and still am very conscious about my hair having lost it all. Afterwards, I felt as though I was over-reacting but reading your experience today reminded me about it.

That's awful @Fantasea and on a whole other level.

I have had a long chat over WhatsApp today with BF and she has apologised. We got a lot out into the open so all is well.

@WrenNatsworthy oh good, glad you were able to talk honestly and got an apology.

@Fantasea holy crap, that's behavior that would leave me not knowing what to say. I have encountered similar, though not cancer-related, and found it exhausting.

Sort of mixed news from my latest scan. It was compared to a scan done in November last year, rather than the most recent one at end of January, because that one was "on another system" and the radiologist wasn't made aware of it. So my latest scan shows disease progression since November, not in any new places just larger tumours in my vertebrae. But when my oncologist checked, the scan in January also showed disease progression so it's possible that the meds I've been on since Feb are working just fine. So waiting for a new radiologists report to get a definitive answer on that.

Latest scan also shows bone growth indicating that the Denosumab and the bone grafts the surgeon did are working.

Oncologist says, depending on the new report, he wants to bring my next scan forward before my trip to Australia. I was hoping to put it back until afterwards but he sensibly pointed out that I don't want any nasty surprises when so far from home. He's right of course.

So 'a mixed bag' as my Oncologist said to me once @SewingBees . Good news about dem bones. I'd be like you about putting the scan off as well!

Had a chat with my Birmingham Oncologist today. He said that anaemia is something that is typically seen at my stage of disease progression and that he wouldn't recommend an mri scan to further investigate bleeds that might not exist.

My hb results came back today and they managed to hold at 86, so still anaemic but no huge drop.

He thinks the way we are managing it with my GP and hospice CNS team plus SDEC is the best way.

So bags of blood until I die. Arrrrrr (back to the pirate ship analogy).

@WrenNatsworthy It makes you so grateful for people who give blood doesn't it. I gave blood for donkeys years, and was gutted when I had to stop when I had IVF. Managed one further donation before the cancer hit.

Any vampiric tendencies showing? Still ok with sunlight, garlic and mirrors?

Yeah, I'm one of those sparkly vampires I reckon.

I'm going to try and get a GP appointment today.
The lump I can feel in my upper abdomen which I've been telling Oncology about for months is worrying me.
I did ask about it the other day and was told they didn't think it was anything sinister as it didn't show on the CT scan.

However after googling it I think it may be a hernia caused by my last surgery (I think someone on here mentioned that the other day).
As it's not really painful but more uncomfortable I would prefer to leave it alone but I've been suffering with severe constipation for weeks now so feel it should be checked out in case it has something to do with my bowel pushing through it.

From what I'm reading it's normally an ultrasound scan they use to diagnose although CT scans can also be used.
I suppose they weren't checking for a hernia when I had my CT scans but still with the symptoms I have you would think my Oncologist or specialist nurse would have picked up on the possibility of it being a hernia but nope it's come down to good old Google 🙄

I'm feeling very anxious about it as I know if it turns out to be what I think it is there is a possibility of requiring further surgery. I suffer PTSD from my last surgery and now I'm scared.
Plus it means my chemo would stop which also scares me.
Fed up!

@GoldenDog1 My hernia showed on ultrasound rather than CT.
Drs tend to be interested only in the things that relate to the diagnosis they are treating. Especially these days - everything is so circumscribed in the NHS.

They may well not operate on your hernia - the risk comes if a hernia gets trapped - strangulation - if they don’t think there’s a risk of that they may well leave well alone. In the bigger picture it’s an annoyance rather than something to be treated.

The femoral hernia I have is one of the types that can strangulate, but I don’t think they will do anything about it given I have ovarian cancer - unless something actually happens to it.

Definitely see your GP, and ask them their advice

@RedRosesPinkLilies Thanks for your reassurances.
This is why I don't like Googling as I get ahead of myself and start to worry.

I'm pretty convinced I have an incisional hernia. Hopefully if I can at least get a diagnosis they can keep an eye on it.

I've got a GP appointment for 11am. My GP surgery have been very good lately and usually try to see me on the same day if I call them.

@WrenNatsworthy I'm glad you managed to talk to your friend . I agree with others that people sometimes say the wrong thing because they are desperate to say something.
I will share(with some shame) my open mouth put foot in moment. A very close friend of mine husband died following a head injury. I went to see her afterwards and started talking to her about my sons play ground head bump. I don't know what possessed me I heard myself mid sentence but could no find a way out of the utter bollocks I was spouting.
My friend and I have be able to move on and in the midst of her all consuming grief I don't think it registered with her, but I still cringe at the memory.
Do you think that they might be able to dispense blood in old rum bottles for you?
@GoldenDog1 Try not to get ahead of yourself with worries you are doing the right thing by getting the lump seen and then you can take it from there.
Having said all that I understand ,I have become more convinced that it's not a Crohns flare I'm experiencing and it is return of cancer so I'm in full doom mode. Not very good at taking my own advice!
@SewingBees Good news about the bone growth next stop Australia.
I'm finding this constant gloomy weather is really affecting my mood and today I have to wait in for my tablets to arrive. I've got no idea when they will come but you bet if I was to pop out it would be during that time!😢

@Florsilvestredelcampo I'm feeling a bit gloomy too. It's a lovely sunny day here and I'd hoped to sit out in the garden but I'm developing a cold and have a blinding headache. So it's a dark bedroom for me instead. Humph.

@Florsilvestredelcampo it's so hard not to worry about these things isn't it?

Anyway I'm back from GP appointment.
He said he doesn't think it is a hernia as it wasn't protruding although he could feel what I was talking about.
He said the CT scan would have picked it up.
I did tell him that it does protrude sometimes and that some days it is more uncomfortable than others.
He thinks it is muscle damage and weakness from the surgery.

Why then am I not convinced?
Why has everything I read pointed to it being a hernia?
Maybe it's because I don't entirely trust CT scans after my October scan told me my cancer was contained in my stomach and the curative surgery could go ahead, only to be woken up in recovery to be informed the cancer had spread and the planned surgery didn't happen and I was now Stage 4 and would receive palliative treatment only.

Is it too much to ask for an ultrasound scan?
You would think after the fight I had to get people to take my symptoms seriously they would be a bit more cautious.

I don't know what to do now.
Should I bring it back up with Oncology?

Sorry for rambling on but I'm feeling anxious.

Id just like to point out how it seems there are a lot of statements and worry and anxiety in a lot of our posts about 'I told Oncology...' and yet nothing has been done or even some sort of rudimentary investigation to make sure it isn't cancer related. We get told all the time to call in anything suspicious etc but they don't hold up their end of the bargain. Frankly I'm quite sick of it having been dismissed for some very serious stuff!

@GoldenDog1 Does it protrude randomly or when you are doing certain things? Eg standing.
Is it possible to get a photo?

I also find dealing with oncology hard. I was worried about a particular symptom because I thought it might be connected to my cancer. But the oncology bitch, sorry, nurse was rudely dismissive.

(I’ve never actually called her that before, but from now on…)

They don’t seem to understand this is the first time we are doing this and it’s full of massive unknowns and uncertainty, and a little humanity wouldn’t go amiss.

@HerbalRefreshmentt I agree.
There seems to be so much anxiety and worry about Oncology not listening to the patients enough or taking the patients concerns more seriously.

@RedRosesPinkLilies it does protrude randomly.
I can also feel it when it's not protruding and it feels quite large to me.
Other times I can only feel it a little bit.
It's not painful but can get very uncomfortable at times. I can feel it standing up, lying down and just sitting here in my chair.
It's hard to describe it but it feels heavy, or like something is pulling.

It could very well be what the doctor said it could be as it is definitely on one side of where I have the biggest surgical scar.
It could also be an incisional hernia as that would also make sense.

I'm just not happy with the "I don't think it's this or that" comments with no investigation. It's those type of comments and lack of investigation that have left me in the position I'm in now.

Absolutely. I understand your pain. That’s how it seems to work these days. They say it’s not this/ that, but are unable to say what something actually is.
FWIW, it sounds like some kind of hernia to me.

Hi all,

I hope you don't mind my having a little moan here. I mainly post on the main cancer thread, but this topic seems to fit better on this side because it's complicated and it'll scare off the newbies on the other thread.

Background: Stage 3 grade 2 breast cancer with lots of affected lymph nodes in 2020. Totally unrelated second primary of skull base chondrosarcoma (grade 2 conventional) in 2023, but it was already visible in staging scans done for the BC in 2020 and they missed it. Several rounds of mega complicated brain surgery to remove this in December.

I just had MRI results, the first proper ones since the surgeries (January MRI was not clear enough for a good read). And it's apparently good news. They got a lot of the chondrosarcoma, or at least most of the properly dangerous bits between the carotid artery and brain stem. There is now "stable residual tumor" that we can just watch. Growth rate is 1-2 mm/ year max, and according to the surgeon it would take "at least a decade" until this could become troublesome, but he's seen lots of patients where no further action was necessary at all, ever.

So apparently this is great news. Everyone around me is celebrating. And I kind of was, initially, but now I'm... not. I don't know how to feel. There is still cancer in my head. How can there still be cancer in my head, but it's good news?! And this now means that I'll never be cancer free again, in my life. But it isn't Stage 4 because it's not spread, it's localized, and this type of cancer hardly ever metastasizes, so again, I'm supposed to be happy. I'm trying, and then I remember that my breast cancer might still come back (classed as v.v. high recurrence risk), and it might do all of the metastasizing that the chondrosarcoma isn't doing, so I don't think a celebration really is in order...

Sorry, this is an essay, but I guess my question is, how do I even try to process this mess? I don't want to hurt my family who are in party mood, but I'm really not feeling it. Any advice?

@KentishMama Have you told your family how you feel?

I can completely understand you feeling wary of celebrating, but this is a victory, even if you'll have more shit to deal with in the future. And in cancerland we need to celebrate the good stuff because the shit stuff is so utterly shit.

But I'm not going to tell you how you ought to feel. This is complicated stuff. Have you got a counsellor? If not could you get some counselling through MacMillan or Maggie's? I have a Maggie's counsellor and she's excellent.

Tell us more here if it will help. We're listening and we understand.

Sending love xx

It's definitely ok to feel that way, you don't just snap your fingers and feel normal again. Ever.

I'm feeling totally rubbish, sleeping a lot, in pain because I'm in the same position all the time, I just want to go in the sea and never come out.

I'm crying all the time and I'm off my food.

I've been at the hospital this morning for my pre chemo bloods and was lucky enough to have my favourite nurse.
She's so easy to talk to and she agrees that it should be investigated.
She's fired off an email to the specialist nurse to come and see me tomorrow during my treatment.
Hopefully she'll be able to arrange an ultrasound scan for me 🤞🤞🤞

@KentishMama
I would talk to your family.
Maybe put a positive spin on it by acknowledging that yes it is good news but you still feel anxious.

Another way to look at it is that there isn't any good going to come from worrying about what might happen in the future, although speaking from experience this is easier said than done.
After a cancer diagnosis and going through what we do, every bit of positive news is a win.

As someone above asked, do you have a councillor?
If not I would look into getting one.
A councillor will be be able to validate your feelings and let you offload at the same time.