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Cancer Support thread 86 - Stay Positive

996 replies

LemonDrizzle10 · 20/03/2023 10:40

New thread as other one nearly full.

OP posts:
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48
Vinorosso74 · 26/04/2023 10:26

Just popping in on the MRI thing. Did you go in feet first? That seems to make it not so scary. I never realised that I'm slightly claustrophobic until I started needing scans, could be partly the scanxiety.
I only had one breast MRI right at the start so they could see everything more clearly to finalise my treatment plan. I know people who had chemo before surgery had further breast MRIs to see the response to chemo. Definitely ask. You can ask your GP for sedatives of you think that might help.
I had two liver MRIs (suspicious areas seen on a CT scan which turned out be be multiple haemangiomas!) and I was very scared of them as I thought I might be right inside. The first one my eyes were outside the machine, the second (not such a nice radiographer) I did have to make demands so he positioned me with pillows so I could see out.

Thymeout · 26/04/2023 11:34

@TopOfTheCliff
Yes! I had Cap, 4 out of 6 cycles and then Covid made it higher risk for me getting to the plague pit of a hospital for blood tests than giving up the last 2. Btw, I tried for weeks to get hospital to accept GP blood tests. GP more than willing, but no. Grand Canyon of a gulf between primary and secondary IT systems. But, hopefully, they've found a way round it by now.

Mine was 'belt and braces' after colon cancer op. Was told that it was much less brutal than other forms of chemo, wouldn't lose my hair. Nothing about diet. But I was still adjusting to only having half a colon, so already cautious about beans, skins, pips etc. Avoiding al dente stalks of brassicas.

My experience was that it was a slow-burner. It held up the recovery from surgery in terms of energy and stamina, but that would have happened any way with being on the shielding list and not being allowed to leave the house.

3 years later, I still have a bit of neuropathy in my fingertips and I think it may have affected the small hairs in my ears. At least, that's one of the possible reasons for 2 major attacks of acute vertigo, 3 years apart. (I wake up, the room goes round and I want to die. Have to crawl to the bathroom. Lasts about 24 hrs. Next day, wiped out but back to vertical again. Stemetil helps a bit if I can take it soon enough. But dehydration may be a more significant factor. No day to day dizziness or unsteadiness on feet.)

Any side effects don't suddenly stop when you stop the pills. May even get worse for a week or so. Cumulative. You don't get get good weeks and bad weeks. Just v gradually get less Tiggerish, I guess, in your case!

Big caveat, of course. I don 't know how much the advantage of your being 20 years younger than me is cancelled out by 2 cancers and associated chemo. Different cancer, possibly different dosage.

But, all in all, my instinct says, please don't sit around waiting to feel ill! There's a v good chance that you won't experience anything dramatic. Just carry on normally, bearing in mind that this means normal for a normal person. It's not the time try to break records or sail uncharted seas. Save that for later!

Scandimandy · 26/04/2023 11:46

@dotty2 @bringonyourwreckingball I think I may have been unlucky is being the last one of the day and the team waiting outisde with their coats and bags ready to leave when I came out the room which is probably why they rushed without all the niceties such as music!

@Vinorosso74 yes feet first, I really didn't like not being able to see anything. Luckily I didn't have to wear a mask... I am definitely going to ask about being sedated next time if I can, would the hospital do this for me before I go in or would I need to get from my GP does anyone know?

Received my results appt this morning for Thurs 4th so only a week to wait now, then I'm off to Marrakesh on the 5th - so looking forward to this x

SummerCycling · 26/04/2023 15:10

TopOfTheCliff · 11/04/2023 15:32

@SummerCycling my first BC was a triple positive IDC grade 3 with lymph node spread. I did the whole Herceptin thing in 2020. I'm nearly at three years on from diagnosis now and it seems to have been stopped in its tracks. I had FEC-T with my Herceptin and Perjeta. Then after I recovered I got an unrelated new grade 3 IDC BC on the other side that is TNBC. I do feel special. I'm almost through the second cancer triathlon, I just have 6 months of oral chemotherapy with Capecitabine left to get through.
I don't think there was much different about being HER2 except that I had to go back every 3 weeks for the full year of Herceptin. It didn't seem too bad after the IV stuff. Hopefully I will feel the same about the tablets. Nothing is as bad as the dose dense full whack of iV chemotherapy.

@ajandjjmum well done for getting a second opinion. I sounds as though your first surgeon has been letting things slide a bit. Hopefully the second option will gee her up a bit. You could ask outright whether she thinks a "clean out" would speed up healing. Fingers crossed for you

I had a wild old time with DM89 yesterday. I went to take her to visit her DSis92 who is fading away and found DM all set to drive us 80 miles. She was so excited I felt I had to go along with it. It was a nerve racking experience and she would have got very lost without me there being the human Sat Nav. I almost lost it at one point but realised this might be her last big drive and she does love it. I thought I might die in a horrible crash and all this cancer nonsense would have been a total waste of time. Luckily she let me drive home afterwards. It does seem sad that in just a few years time all my elderly relatives will be gone and their houses sold and we will be in a whole new world. Soon they will all be forgotten.

Just heard my ferry to France is cancelled because of weather. Just my luck! Damn damn damn. I was really looking forward to going abroad for the first time in 4 years. Maybe we can still rejig things.

Sending strength to all
Top

Hi Top

Thanks for your response to my post.

You've really been through it, how horrible to get a second one after everything you'd been through the first time.

I completely agree that Herceptin and Perjeta are far easier to cope with than the chemo was. Chemo nearly destroyed me (how it felt anyway).

Best of luck on the tablets they've now prescribed for you xxx

SummerCycling · 26/04/2023 15:24

HI everyone

So sorry for not replying to the people who kindly responded to my post a couple of weeks ago. I have been struggling to find those messages again. Is there any way we can locate our own posts and the replies?

SummerCycling · 26/04/2023 15:31

Scandimandy · 25/04/2023 22:09

I had an mri tonight (boobs) I’ve had one before but it was head and neck last time so I wandered in the room tonight thinking it would be the same and how wrong could I have been. I found it horrific and my whole body was clenched the entire time I was in there, I found it so suffocating, the only thing that stopped me from squeezing the emergency thing was the thought that they’d have to start again. I can put up with the noise but face down into darkness just put me over the edge and I’ve been tearful ever since. Please tell me you don’t have to have many of them going forward…

I have quite bad claustrophobia and got myself in a right state about having an MRI.

Mine was breast, so face down but feet first into the tunnel.

My GP gave me Diazepam. I took 4mg but by the time the MRI was supposed to be I was still panicking so the lady postponed my slot 45 mins and said to take another 2mg. I did, and 6mg worked.

I also had my husband with me in the room actually holding my hand throughout the entire scan. It meant I knew someone was there in case the emergency thing I was holding broke. If he wasn't available I'd have asked a friend or nurse to hold my hand.

I have done 4 in total now. They each got better because I knew I got through the previous one(s) although the second was bad: the sound didn't work and I couldn't hear the woman's voice and there was no music either. The speaker didn't work and I was screaming the place down that I couldn't hear them. I pressed the emergency hand-held thing and was taken out of the tunnel. I did manage to go back in and complete the scan. the 3rd and 4th times were the same in that the sound system was still broken, but I had learned about that the 2nd time so coped fine.

Whattodotomorrow · 26/04/2023 16:06

Hello to all in the thread…new and old. I too lose track of who said what and when. I’m currently laid up after my dose of Dox last Friday. I was doing so well over the weekend but then the aches and diarrhoea hit me! Without being tmi I’ve never experienced anything like it!! For those in the know, when do you think I can safely leave the bathroom? Will it pass in a day?

TopOfTheCliff · 26/04/2023 16:29

@Whattodotomorrow in your chemo goody bag should be a pack of loperamide. Take two now and one every time you have to go. Juggling laxatives and loperamide is a skill you will soon learn. Hope it settles quickly

Whattodotomorrow · 26/04/2023 16:59

@TopOfTheCliff your comment made me laugh. I said to my husband the other day that I think I am actually constipated and suffering diarrhoea at the same time. His reply was ‘only you!’

I wasn’t given loperamide, but I have Imodium which I think is the same thing. My oncologist department like us to suffer the side effect first before subscribing something for the next round. Budgets etc! Thanks for your words of wisdom.

Scandimandy · 26/04/2023 17:21

That’s really good to hear @SummerCycling that your husband could be in there with you, I’ve just tee’d my partner up that if I have to have another that he can come hold my hand, he’s up for anything to help! think it will really help with the panic!

Podgedodge · 26/04/2023 18:13

I’m so with everyone going through all this crap just now. Cancertown is a shit place to live.
However, my biopsy came back…just scar tissue. If a positive outcome is possible for me then yes, let’s stay positive!
(cannot begin to say how relieved I am.)
but obviously I recognise sometimes someone else’s good news is not always what we need to hear.
I hate cancer.

SummerCycling · 26/04/2023 18:33

Scandimandy · 26/04/2023 17:21

That’s really good to hear @SummerCycling that your husband could be in there with you, I’ve just tee’d my partner up that if I have to have another that he can come hold my hand, he’s up for anything to help! think it will really help with the panic!

@Scandimandy

It helped a lot to have him holding my hand because I knew I could communicate if the machine broke.

I was seriously scared of ridiculous things like the bed getting jammed with me inside the MRI etc etc I told the first nurse about that fear and she assured me it had never happened, but if it did, it would still come back out of the machine. I still double checked I'd be able to squeeze out with the bed in place!

thesandwich · 26/04/2023 18:34

Brilliant news @Podgedodge . You so deserve it.

SummerCycling · 26/04/2023 18:40

What are the chances of a surgeon leaving in level I nodes that were biopsied as Grade 3 HER2+++ cancerous? I mean leaving them in my body after surgery by mistake? They were removing lymph nodes levels I, II and III.

The radiologist or whoever that was at the beginning had added markers to the nodes when biopsied, but the pathology report after surgery doesn't mention any lymph node markers at all.

What is the chance of the histopathology missing invasive cancer in the breast or lymph nodes? Can it / does it ever happen?

I got Pathological Complete Response despite stopping chemo early due to side effects. My initial stage was 3, and I suspect 3c with the lymph nodes affected up to and including level III. Breast mass 106 mm originally. All HER+++ (hormone negative, completely zero ER / PR). I am so anxious the pathologist missed stuff by mistake and that there was residual cancer.

I will be on Phesgo till I've had 18 injections. If I'd had residual cancer it'd have been Kadcyla for a year.

WorryMcGee · 26/04/2023 18:40

@Podgedodge amazing news, so pleased for you ⭐️

SummerCycling · 26/04/2023 18:41

Podgedodge · 26/04/2023 18:13

I’m so with everyone going through all this crap just now. Cancertown is a shit place to live.
However, my biopsy came back…just scar tissue. If a positive outcome is possible for me then yes, let’s stay positive!
(cannot begin to say how relieved I am.)
but obviously I recognise sometimes someone else’s good news is not always what we need to hear.
I hate cancer.

That's great it's scar tissue, thank goodness x

LemonDrizzle10 · 26/04/2023 18:45

@Podgedodge brilliant news!

OP posts:
Whattodotomorrow · 26/04/2023 18:45

@Podgedodge brilliant news! What a relief

@SummerCycling if in doubt, ask! It’s your health and your right to question. So many of us become passive on this unknown shit trip but doctors and nurses are human too and could/do make errors.

SummerCycling · 26/04/2023 18:50

Whattodotomorrow · 26/04/2023 18:45

@Podgedodge brilliant news! What a relief

@SummerCycling if in doubt, ask! It’s your health and your right to question. So many of us become passive on this unknown shit trip but doctors and nurses are human too and could/do make errors.

I did ask the oncologist, who said the MDT check if a marker isn't mentioned, but that markers can fall out during surgery. The second comment she made sort of cancels out the first though!

I don't think I will ever know:

  1. whether all the originally and still potentially cancerous nodes were in fact removed in surgery

  2. whether residual cancer was missed during the histopathology analysis

I just have to try to believe that all my huge breast mass and all the multiple cancerous nodes were free of invasive cancer by the time I had surgery.

I had:

4 x EC chemo
2 x weekly Paclitaxels
2 x 3-weekly Abraxanes
2 x Phesgo

Before surgery.

Should have been the above plus another 1-weekly Paclitaxel and a 3-weekly Abraxane. In other words, I did two thirds of those.

Fantasea · 26/04/2023 18:57

@Podgedodge fabulous news, so pleased for you!

ClashCityRocker · 26/04/2023 19:04

@podgedoge fantastic to hear your wonderful news!

Podgedodge · 26/04/2023 19:25

So any peopleI will never meet being so kind. Thank you all so much, this is the best corner of MN definitely! Hope everyone has some news to celebrate or at least enjoy soon.x

bringonyourwreckingball · 26/04/2023 19:50

@Podgedodge that is fantastic news you must be so relieved.

Scandimandy · 26/04/2023 19:55

Congrats @Podgedodge 😁

AGreatUsername · 26/04/2023 20:28

Ahhh @Podgedodge I am thrilled for you. Congratulations.

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