Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

[Chesneyhawkes1]

@Bloodybridget thank you! @BitOfFun I do hope you can get some relief from your pain soon.

I had an MRI during my last week off chemo and radiotherapy and the report was posted in my little hospital ap today.

The tumour had shrank from 33 x 22 x 27 to 22 x 9 x 22. So I'm guessing that's good news.

Since that MRI I had 4 treatments of brachytherapy, so hopefully that will take care of the last little bit 🤞🏼

[InOtterNews]

Thanks for the new thread.

It's all gone a bit Pete Tong since I posted last. I knew levels would drop and I was ropey when I was getting bloods taken yesterday. They asked me to come back again this morning and I collapsed. I'm still neutropenic and have had IV antibiotics and fluids as well as a blood transfusion.

Not gonna lie - I had a little cry. The treatment really is more horrid than the cancer (I appreciate I wouldn't be saying that if I just left the cancer).

I've just been admitted again and likely to be here for a few more days. I know that it's still likely to get worse before I get better (have started reading on the transplant)

[BitOfFun]

Oh Otter, I'm so sorry to hear that. I hope things improve for you; all that sounds rotten

[BitOfFun]

My intro- I did a long one at the start of the last thread, which I won't repeat. The short version: Stage 4 breast cancer, incurable. I'm bumbling along still though, mostly with drug treatment, and I've just had a big dose of radiotherapy for pain relief to my spine, where most of the secondary tumours are. It's not helping yet, but the effects are cumulative, so hopefully it will make a difference where the various opiates I'm on don't!

[Lizdeflores]

Hi everyone, thanks for the new thread.
I'm still at the start of all this I had a biopsy (ovary) on Monday and I have an appt to discuss treatment (probably chemo and surgery) next Wednesday. I feel completely overwhelmed by everything that happened and find it really difficult to explain how I feel, having this thread helps.
So sad to read that so many are having a tough time I send lots of love to all xx

[gillmoregirl]

@Chesneyhawkes1. Shrinking tumours is good news. @InOtterNews I'm so sorry you are going through such a difficult time and I hope things improve soon. @BitOfFun ditto to you. I hope radiotherapy delivers some relief from pain soon for you. @ivampire. Great to hear your new drug is working well. @citybumpkin. Have you managed to catch up on some sleep. @daisypond and @Trumpton. I was thinking of you. Did you ever get speaking to someone about your concerns over treatment/surgery. To my fellow bowelbabes @Squiffy01 @Borntobeamum @Lizdeflores and @Thymeout. I hope you are all well. @Bloodybridget Thank you for new thread and asking about me. Finally got Macmillan nurse today who said that covid has pushed everything back and my surgeon is waiting for theatre spots to open up. She was very reassuring but unable to even give ballpark guess on date. Was very helpful re my concerns about delay causing cancer to spread outside the rectum and confirmed the report stated it's contained. I also spoke to surgeons secretary again and she said my notes were on his desk. I asked her to let him know I called. I don't want to be pushy as I know other people need to be seen too. Not sure what the etiquette is! It's out of my control. Home alone yesterday and when trying (unsuccessfully ) to get nurse the enormoity of everything hit me and I cried and cried. It actually helped as I have been trying so hard to act normal. I'm also conscious that others are dealing with much worse than me.

[gillmoregirl]

@Lizdeflores. Sorry I tagged you in wrong place. I meant to say thanks for suggestion to ring nurse and to ask how you were doing. I know your cancer is not bowel related. I'm so sorry.

[BitOfFun]

So this is all new to you, @Lizdeflores? The dazed terror phase should ease a bit once you have a definite treatment plan in place.

[Lizdeflores]

@gillmoregirl I've been called worse things! Oddly I've got crohns disease so bowelbabe is a good fit. Crohns puts you at higher risk of developing bowel cancer so I always thought that would be the one to get me
@bitoffun I think I will feel a lot better when I have a treatment plan, I need facts.

[gillmoregirl]

@Lizdeflores. Two years ago I was investigated for ovarian cancer. Raised ca125 levels and mass on ovary. Turns out to be benign cyst but at recent smear the nurse took bloods and my ca125 levels remained high. I have constant Discomfort On my Left side particularly when sitting which I attributed to previous ovarian surgery and possible scarring. (When did I get my doctorate???). As I had been diagnosed with endometriosis after surgery I thought that bowel problems were due to that. Recent Gyne review showed nothing more than fibroid

But because of family history and the fact that I had read somewhere that ca125 levels had been raised in some bowel cancers I asked gp to refer me. Thankfully she did and I hope that my cancer has been caught early but this won't be known until the lump/lesion on rectum is excised. Which is why I'm so anxious for surgery to occur.

I think deep down I knew for a while something was wrong but I was too quick to put it down to other factors age, ovarian surgery, perimenopause etc. At one stage everything on the tv was about bowel cancer. Every magazine I lifted had a story and it was as if the universe was trying to tell me something but I buried my head in the sand. I know this sounds airy fairy but it's true. I just wished I had listened to my body earlier and sought advice. May have caught this at polyp stage if gone earlier. But it is what it is.

Sorry for moan. I've been in a funk this past couple days which is really unlike me.

[Bloodybridget]

@Chesneyhawkes1, very pleased to hear your tumour has shrunk.
@InOtterNews, oh you are having a horrible time, I hope at least that the hospital staff are being nice to you, and that fellow patients are not troublesome.
@Lizdeflores can someone go with you next Wednesday? Waiting is hard.
@gillmoregirl not much better re date for surgery, then, but I'm glad that the Macmillan nurse was somewhat reassuring. Please don't ever feel you have to apologise here for getting upset, falling apart, feeling rubbish, or complaining about anything at all! Part of the point of these threads is that we can say whatever we want, it doesn't mean we're not aware of other people's struggles and difficulties.

[Bloodybridget]

My brief introduction: I was diagnosed with ovarian cancer last May, had everything out, then chemo. I was very lucky that it was found early, quite by chance, so only stage 2; but grade 3 because the tumour was carcinosarcoma which is rare and aggressive. I'm just about to have my second 3 month check up, by phone, I'm sure I'm fine. These threads have been incredibly helpful for me.

[sneezeandclench]

Hi everyone, I have read through the previous thread and am awestruck by how you all cope with the ups and downs. I am currently waiting for the results of some biopsies I had taken last Friday whilst having a hysteroscope.
What happened is that I haven't had a period for over a year and then I started bleeding. It got worse and worse until after passing some horrific blood clots I ended up in A&E. After lots of tests I was referred for an urgent scan the next day and had an ultrasound both internal and external. The results of that meant I had a hysteroscope a few days later. The consultant said he would ring me when he got the results and that is what I am waiting for.
There are a few complications to my story. I am 51, married with 3 daughters and a transgender son, my youngest is 17 so no little ones thank goodness. I weigh 30st and so I am far too fat to have a ct scan. I have poor health anyway with diabetes, AF, schizoaffective disorder, sleep apnea, depression and anxiety and also got diagnosed with the start of kidney failure and heart failure recently.
Last year I had cellulitis in my leg and nearly died of sepsis. I had to stay in hospital for 4 weeks but thankfully recovered enough to come back home. My husband is also my carer and has been absolutely brilliant but this new possibility of cancer has nearly pushed me over the edge.
I keep thinking that if I actually have cancer it is going to kill me because I am so limited as to treatments. I am too fat for anaesthetic if I need surgery and my health is so crap that my prognosis is terrible.
Sorry for all my waffling I am just so worried. Oh yes, I am also agoraphobic so even going to the hospital was awful.
What I know so far is that my endometrium was 20mm even after 2 weeks of solid bleeding and my ca-125 result was 52. Thanks if you made it this far, my head is a mess but it has helped to write things down.

[Bloodybridget]

@sneezeandclench, hello and welcome to the thread, very sorry you are having to cope with this. How long ago did you have the hysteroscopy? I hope you don't have to wait much longer for the results, the uncertainty can feel worse than reality. You will find lots of support here, no matter how things turn out.

[citybumpkin]

Hello All! Intro: Diagnosed with triple negative breast cancer (IDC) at the start of March. Stage 1 grade 3. Lumpectomy at the end of March and just had my fourth AC chemo. 12 rounds of taxol and rads to go. Currently I'm feeling really low as keep thinking its spreading everywhere. My mum passed away from BC three years ago. A different type of BC but hers had spread to her bones. Every little ache and twinge sends me into a depressive spiral.

[iVampire]

Hi squeezeandclench and welcome to the best bit of MN even though no one ever wants to arrive here. The early bits, when you know there’s a good chance something bad is wrong, really are up there amongst the most stressful parts. I hope that we will be able to wave you on your way with a spring in your step in a few days, but if not we’re still here.

My intro: I have leukaemia (CML) diagnosed out of the blue in autumn 2017. It’s incurable, but not (in this form/stage) terminal, so I’m the model for the type of cancer treatment that keeps it as an annoying chronic condition.

After a achieving MMR (the name for the required level of suppression for everyone to stop worrying about you) at the very end of the first year on inhibitors, I then bumped along slightly above it for another year, at which point they moved me to a second line drug.

And I found out this week that I’m back in MMR. Very happy!

OK - I need to stay there, but I got there in less than half the time in the first drug, and it has fewer side effects. So it’s going well right now

Going less well is going out for a run, going onto rougher grass to keep away from other people, sticking my foot in a pothole and fracturing it! So I am sporting a fetching exoskeleton boot and unable to do much in the way of newly permitted daily outdoor exercise.

Also awaiting announcement on London Marathon - as I’m one of those perfect twats that people all-too-often mention to the newly diagnosed ‘So-and-so had (usually completely unrelated) cancer and she runs marathons now’

[sneezeandclench]

Thanks for the welcome, Bloodybridget, I had my hysteroscopy last Friday so it will be a week tomorrow. I really hope I hear something today so I can either stop panicking or start planning.

[Lizdeflores]

@Bloodybridget My husband is being a fantastic support the appt on Weds fall on our wedding anniversary! We might find some limp NHS sarnies and awful coffee to have in waiting room!
@gillmoregirl The what ifs are ever present in my mind but I think we have to try to let them go(easier said than done) because we will drive ourselves crazy. I have spent years putting down any pain/discomfort down to Crohns. So when I was experiencing pains which in could of been the first signs of trouble I carried on and ignored my bodies signals. Because I'm already in the under a gastro team I had a colonoscopy and MRI fairly recently but I'm fairly anxious that they maintain close contact with my Gastro team as they know me well

[Skap]

Hello all. It's almost a year to the day since I felt a tiny lump on my breast. It was in a spot where I'd had pain for years.It turned out to be stage 1 grade 3 invasive ductal carcinoma with some DCIS thrown in.
I had surgery last August then chemotherapy followed by radiotherapy which finished in February. I was on supposed to be on Herceptin until September but it was stopped after 9 doses because of coronavirus.
So all done.
Hair growing, nails recovered. Scars lumpy. Nipple still blue.

One of the slightly worrying things about my treatment, quite common in breast cancer I think, is that there is no test or scan at the end to say hey you're all clear. I will have annual mammograms and have one booked for August but this doesn't reassure me much since my cancer didn't show up on a mammogram a few months before I found it. It was a very aggressive cancer and I was told more than once how lucky I was to have found it.
I don't post on the thread very often now but it was a lifesaver for me for many months when I felt I lived in a world of cancer.

The chemo badly affected my Rheumatoid arthritis whcih had been well controlled so I have had six months of pain and fatigue from that since January which has been far worse than the cancer treatment.

@Bloodybridget glad to hear you are well. I have found telephone consultations actually work very well especially if you know the doctor already. Mind you my Rheumatologist caught me by unawares by ringing 4 days before the appointment. I was down the garden covered in mud and not waiting by the phone with my carefully prepared list of questions as I had planned.

@iVampire brilliant news about the MMR. Ooch to the foot fracture.

@BitOfFun I hope the radiotherapy kicks in soon and helps with the pain.

[BitOfFun]

iVampire- are we allow we'd to hate you if you complete a marathon? . You are amazing!

[Bloodybridget]

@Skap I completely get why you'd be anxious about a recurrence not being picked up from a mammogram. Have you tried asking a doctor or nurse about that? Rubbish re arthritis pain
I had the phone check up a little while ago, pretty much on time (so I was all ready!). Apparently because I didn't have raised CA125 when I was diagnosed (and thus it's unlikely to show up in blood tests now), I'll have a CT scan in about 6 weeks, and another appointment a couple of weeks after that when they should have results. I'm pleased about that.

[iVampire]

Hate away!

Right now my limit is about 10 mins hobble in the fracture boot. I move on to phase 2 rehab exercises tomorrow

[barberousbarbara]

Hi all, old and new. Checking in and apologising, yet again, for not checking in regularly after all the lovely support I've received here.

As a recap, I was diagnosed in November 19 with triple negative breast cancer (5cm tumour, spread throughout the rest of the breast plus into lymph nodes). I had chemo and a trial drug. After 4 rounds of chemo a MRI showed I'd had a total response and no cancer could be seen. Due to COVID19, the rest of my chemo was cancelled and I had a mastectomy and full node clearance on 21st April 2020. The total response was confirmed through biopsies and I was sent on for radiotherapy. I've had 4 sessions so far and my final session tomorrow then that's it for treatment. It's a very weird feeling, especially as if I'd had the fully chemo I'd be waiting for surgery now.

@citybumpkin how are you? Have you considered counselling to help you? I had terrible anxiety through the beginning of my treatment. Despite my cancer treatment ending I'm going to continue with my psychotherapy until I'm back at work and happy that I'm coping. It's been a huge help.

[citybumpkin]

@barberousbarbara Glad to hear you're doing well!

I'm struggling at the moment. Physically, tired and achy from the chemo. Mentally, every twinge makes me think its spreading and I'm very anxious about the future. Having a port fitted today which I'm not looking forward to. Feel like my body and my mind aren't my own. I'm having counselling but finding it isn't helping. Talk of cancer and dying just throws me into a deeper gloom. I'm trying to focus on the positives: lumpectomy with clear margins, no LVI and no lymph node involvement plus now chemo. But then there are the what ifs...

[barberousbarbara]

@citybumpkin Sorry to hear that you're struggling but it's ok. We all understand the fear of the unknown. You do have some great positives to focus on. Just take a day at a time. There are some great support groups for TNBC out there. I'm on two Facebook groups and they've been a huge help, as well as this thread. Take care and be kind to yourself