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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Terrified i'm dying!!!!

697 replies

Lostmymind11 · 16/02/2024 16:37

Sorry if this is on the wrong thread but i'm not sure where to put it

Nearly 2yrs ago i had surgery to remove a sarcoma (no treatment afterwards as not needed). My 6 month scan was clear and i had another scan 4wks ago to check if it had come back. The hospital have rang today and told me they had booked me in next Friday to see a member of the surgery team. I am abaolutely terrified and beside myself with worry. I am a single parent to a very young child who has no contact with dad due to domestic abuse. I barely have any family/friend support. If the cancer is back i really don't know what i will do. I feel physically ill

OP posts:
Incakewetrust · 10/07/2024 20:19

Hope you're doing ok op xxx

Original poster
Lostmymind11 · 10/07/2024 20:38

So i met with my oncologist today and have been thrown a curve ball. A few weeks ago my surgeon told me no chemo after the op as there wasn't one for my cancer but currently something in trial so maybe in the future. Today the oncologist wants to trial 2 chemo's over 4 sessions. Without chemo i have a 50% chance of it coming back within 2yrs which is what has happened now. They don't know if the chemo will even work on any microscopic cells left behind and if it does work thats only by 5-10% chance. So i have a big decision to make. It will be rough i will be really poorly and lose my hair etc

OP posts:
Silvers11 · 10/07/2024 21:15

@Lostmymind11 I am really sorry that you are faced with that difficult decision. Not easy for you. Especially when you have just gone back to work. If it were me, I think I would ask myself how I would feel in 2 years time, if it does come back and I hadn't taken the opportunity to possibly increase the odds of it not coming back by an extra 5-10 %. But I am not you and I am not the one who will have to go through a tough time if you decide to go for it. Sending virtual hugs

DollyPartonsLeftTit · 10/07/2024 21:15

@Lostmymind11 are there no places left on the one that's currently on a trial? Or are those the ones he wants you to try? As for losing your hair, can't you have the cooling cap? When I was having chemo at the Christie cancer hospital in Manchester (2010-2012), they offered it to me, but I thought nah, it's just hair. All my family, friends and workmates thought i was daft to refuse, because i had beautiful, long black hair. But at the end of the day, as it turned out, I actually rocked the bald look, and found some hella funky zandanas to wear when it was cold! Lol. But I found, that I actually appreciated the freedom of having to no longer brush it when I got up in a morning. The feeling of the fresh air to my head was lovely too, and it did grow back. Hugs and love to you, and sending you good Juju with your decision making. ❤️

Original poster
Lostmymind11 · 10/07/2024 21:19

@Silvers11 thats exactly what my friends said. Its so hard because i don't want to regret not doing it but at the same time i'm making myself really poorly for something that may not work

OP posts:
Original poster
Lostmymind11 · 10/07/2024 21:20

@DollyPartonsLeftTit i'm not sure if its the same trial or not. Should have asked tbf but was all a blur. Yeah i guess i could mention the cold cap but like you say its just hair and i could get some funky wigs

OP posts:
Incakewetrust · 10/07/2024 23:48

Such a tough decision that's been handed to you. I'm so sorry that it's another thing you're facing.
It's a lot to ask of you if there's only a 5-10% success rate.
You've said it was all a blur today. Would it be possible to have a think about all the questions you want to ask and then book a phone call with your consultant?

poetryandwine · 11/07/2024 00:15

Incakewetrust · 10/07/2024 23:48

Such a tough decision that's been handed to you. I'm so sorry that it's another thing you're facing.
It's a lot to ask of you if there's only a 5-10% success rate.
You've said it was all a blur today. Would it be possible to have a think about all the questions you want to ask and then book a phone call with your consultant?

I am very sorry you face this tough decision, OP. But I think this is a good idea, if possible.

Opinionwontchangeluv · 11/07/2024 01:06

Thanks for updating everyone usually people run off, glad to hear you're okay

Nanaof1 · 11/07/2024 05:17

@Lostmymind11 I am so sorry that you were thrown that curveball! That is a tough decision to make, and it sucks that you even have to make it.

Definitely, when the shock wears off, write out all of your questions and concerns and have a conversation with your doctor.

UnMumsnet {{HUGS}} sent your way.

Original poster
Lostmymind11 · 11/07/2024 06:43

Morning everyone, my oncologoist is phoning me in a week for an answer. They want to start pretty much straight away but i'm going abroad on the 7th August so he said we would have to delay until after then which brings the percentage even lower. I honestly just want to cry, until yesterday i was getting back into the swing of things and planning things for the near future to make sure i was actually living but now i just feel really rubbish. I haven't slept all night. I feel really selfish even considering it because i'm sure there are people out there who never got my options and would have loved their Dr to give them this news but its really hard

OP posts:
TealPoet · 11/07/2024 07:27

Sending big hugs to you. That’s such a tough choice. I know what I’d decide but that doesn’t help you! Just know you have lots of people here supporting you.

Zanatdy · 11/07/2024 07:33

Such a hard decision but in your shoes I’d take the chemo. I don’t think I could choose not to as I know I’d regret that later on. The chemo will be tough but that extra chance of it keeping the cancer at bay is surely worth taking. All the best OP.

Namechangechangeobv · 11/07/2024 07:36

Hi @Lostmymind11 . My husband was faced with the same decision when he first had sarcoma. He was told that the chemo at the time had a 5% chance of improving his chances but a 2-3% chance of causing heart failure/sepsis. So based on that he made the decision not to have chemo.

We also went to the Marsden in London who have a computer programme which calculates your individual risk with sarcoma. Overall the risk of recurrence is 50% but yours may be higher/lower and may assist you with making the decision. His came out as 63% chance of no recurrence which again helped with then chemo decision.

He is now almost 7 years past 2nd recurrence and no chemo and (touch wood!) is doing really well.

you can ask your GP for a Marsden referral. It happened very quickly for us and they were so great we moved all of his care there. They pay for transport.

feel free to message if you have any questions. You’re not alone in this.

Stupidliefromfriend · 11/07/2024 11:13

Hi OP, I did a chemotherapy regime that was fairly brutal. That's actually how it was described to me, I'm not just being melodramatic. It's not the recommended route but the initial chemo didn't work so i had to buckle up and go for it. My hair fell out pretty much straightaway.

You can do it! All the way through I reminded myself that it was temporary.

I feel great now. First I got through it, then I recovered over time and then I became a fitness fanatic. I've never been so healthy.

poetryandwine · 11/07/2024 12:26

When you speak with the oncologist, can you ask what they would want for themselves or a family member?

Also, is the 5% statistic straightforward? When DH had his aggressive cancer he had chemo. His surgeon had been quoting great statistics for it to us. At one point an oncologist quoted a low statistic. It turned out to be a scholarly measurement and indeed almost all long term survivors did chemo.

BTW I know the actual stats on chemo are different for your situation. I’m only saying, make sure you understand the meaning of what was said. Not all oncologists have great communications skills. He owes you a good understanding, so take it at your own pace.

noctilucentcloud · 11/07/2024 22:27

That's a really tough decision OP and I can see why it's thrown you when you weren't expecting it. I agree with other posters who've suggested noting down any questions you have to ask the consultant. Have you got a friend or family member you can chat it through with? Or can you contact your cancer nurse or someone similar as I guess they'll just listen and be led by you? Even writing stuff down might help you start to sort out your thoughts.

Original poster
Lostmymind11 · 16/08/2024 19:35

Hi everyone, i refused the chemo they offered me in the end. I've just come back from a lovely week away in the sun with my son to the news that one of my lymph nodes has doubled in size since my last scan 3 months ago. I don't have a plan of action as of yet as they won't discuss me until Thursday but feeling really down right now

OP posts:
MatildaTheCat · 16/08/2024 19:40

Just sending you love and support. Try to keep occupied with nice things until Thursday and reach out to all those around you who can offer you support and a safe space to talk about your fears.

Can you print some photos of your holiday and make a collage or something to keep those memories fresh?

Thinking of you x

TealPoet · 16/08/2024 19:54

Sending you love too - I hope your holiday was amazing! Focus on those moments until Thursday and then you can give serious thought to your next steps. Big hugs to you!

momtoboys · 16/08/2024 19:56

Thinking of you.

poetryandwine · 16/08/2024 20:00

I am sorry to hear this, OP.

But an enlarged lymph node could be reactive. DH had two of these adjacent to the one that had a few cancerous cells. It isn’t at all clear from your post what this means. It might not be clear to anyone yet.

That’s its own kind of hell, I know. Please tell us if and how we can help you.

Silvers11 · 16/08/2024 20:48

Glad you had a good holiday @Lostmymind11 Not so good coming back to that news - and 6 days is a long time to have to wait to discuss. I have been thinking about you.

Incakewetrust · 16/08/2024 22:24

So sorry 😔 do you have anyone supporting you irl? Xxx

Topjoe19 · 17/08/2024 07:30

I'm so sorry that you've come back to that news after a lovely holiday. Also that you have to wait until Thursday to find out more. Hang on in there