Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

[Fantasea]

@HelpIcantfindaname From my initial CT scan it showed a mass on one ovary and what they called a cyst on my liver. They seemed unconcerned about this 'cyst' until after my surgery (where there was extensive disease on both ovaries) and chemo which was 9 months later and then suddenly they were really worried. I had an US which was inconclusive and then an MRI and then a further US where they concluded it is a benign haemangioma. They just keep an eye on it in terms of size as I might need it taken out in time due to size rather than malignancy. My lesion is on the ligament that supports the liver. Thinking of you and your DD tonight Xx

[TwoBigNoisyBoys]

@balkanscot no words to say except I’m thinking of you and sending you all the love possible.

xxx

[Silkierabbit]

Balkan Sending lots of love and hugs, so sorry its been confirmed.

Tryhardermum So sorry your e-mail bounced back and they won't shift on dates. I did find after I had the surgery it was not so bad for delays and it has improved a lot so once you are through this hopefully will improve but you really should not have to wait.

Help Sorry cancer has been confirmed and hope the lesions turn out to be benign. I have breast cancer but my CT showed lots of issues and they initially said could well be at stage 4 but after further scans it was not. The scans often show things which are minor or benign but they sometimes want further scans to confirm this. I had nothing on the liver but a 3cm x 3cm mass in adrenals which was down as possible mets but wasn't and something on lungs (in the end they said covid), an issue in the bones (something like bony island joint), something on thyroid, something on kidneys but all OK in the end apart from my sanity.

New flooring in DDs room and DH went to dentist. Mr Floof has been going crazy, loved the new flooring. My neuropathy is getting a bit worse but not too bad. 4 weekly chemos to go, can't wait until they are over.

Love to everyone. Hopefully going to jet boat to see seals on Friday. At least its 4 days off now for DH.

[AGreatUsername]

@Fantasea your CT showed less than what was actually there? God what a worry. I’ve been trying to tell myself that I need to wait until they’ve opened me up but that as the CT only showed 2 ovarian masses and a shadow on the omentum I can be hopeful that is “all” there is. Maybe not then. Argh.

I’m in a bit of a tizz today. The consultant mentioned the cells found look low grade which is great as it’s less aggressive, but the caveat is it’s much harder to treat (I think only 10% of people have a result from chemo on low grade) so it hinges on them being able to remove all disease during surgery. I’ve been up most of the night having half asleep dreams of them finding it everywhere when they operate. Such stress. I’m off to see my dad today for the first time since Xmas and the last time before treatment so hoping to have a few drinks in the sun and a nice day but I’m full of anxiety. I am actually considering calling the GP next week and asking fir some anxiety meds or sleep tablets or something.

[thereisonlyoneofme]

@balkanscot Im so sorry to hear about your OH.

I came on to post that my latest scan was clear, but now feel sad for you and your OH.

[Fantasea]

@AGreatUsername the lesion on my liver and disease on my right ovary all showed on my first CT. They referred to this liver lesion as a 'cyst' and didn't refer to it until my surgery and chemo (4 cycles of chemo, surgery, then 2 cycles of chemo) were all completed which by this time it was 9 months after my first scan. I'd presumed they had removed the lesion as they told me they 'got all the disease' so was surprised that it had been left behind. Then they wanted to investigate it and I had the US, then MRI then another US and they then concluded it was benign. I'm really sorry to have worried you Xxx

[Fantasea]

@thereisonlyoneofme great news about your scan, I'm really pleased for you.

[HelpIcantfindaname]

I got diagnosed with bowel cancer with a phone call from the nurse last week. I see the consultant in the morning, so will be asking him about school.
I teach 5 & 6 year olds, & am worrying about the possibility of catching Covid from them.
I know I need an op, I don't know how long I'll wait for it. They need to investigate lesions on my liver too.
I'm not sure how long I'll need off work.
Do I go in this week?
I'm so tired I'm thinking of asking to do half days.
What do other people do?

[MrsPnut]

@HelpIcantfindaname I can only speak for me, but once air was diagnosed I spent 6 weeks getting my work tidied up and passed on to other members of staff but I don’t work in a school so I could take time out for scans etc during that time. You also need to consider how long you might be out for and how much sick pay you are entitled to. I’d discuss timelines tomorrow with the consultant.

[MrsWooster]

HelpIcantfindaname
im sorry for your diagnosis. Assuming your treatment will start immediately, I would tell work you’re off full time ASAP, or at the very least aim for part time now, use the holidays then go off sick in September to extend things. get advice from Union on how to maximise entitlements
As a teacher, you’ve got 6 months in full then 6 months on half pay and you will need all your energy and mental resources to go through this cancer process.
Prioritise yourself.

[Silkierabbit]

Sorry to hear you got diagnosed with bowel cancer Help I would ask your hospital re timescales but normally once cancer is found they like to deal with it quickly.

I was advised to prioritise the cancer over absolutely everything by my team and I think that is good advice. Its hard to put yourself first when you have kids / teach etc but the time to do that is now. Ask about the impact of covid, for breast cancer surgery it can mean a delay of 7 weeks though it is calming down on that now, I think that rule probably applies to all cancer surgery but check. I would do everything to avoid covid pre surgery / first treatment and if that means being signed off work from now or wfh then so be it. Do what is best for your health. I was lucky that I could stop working and also even before was wfh.

The other things worth considering doing at some point if you can face it are dental checks, have to go private here but was well worth it and got higher fluoride toothpaste for chemo and radio as well as teeth perfect pre chemo, and especially if chemo might be needed and explain you have cancer treatment.

Just back from a couple of days away seeing puffins in Farne Islands which was lovely and Holy Island. DD restarts GCSE exams this week, 3 weeks of that to go and 4 more chemos for me, 9th one today.

[AGreatUsername]

I’m sorry to hear of your diagnosis @HelpIcantfindaname But, on the positive it means you’re a step closer to recovery.

I was booked an operation 6 weeks in advance but made it clear I would drop everything to take a cancellation. I have managed to get one a week earlier than planned, next week. I am staying in work until tomorrow, then using holidays to cover me until my sick note starts on the day of admission. I only get a little time paid sickness though so that has played a part in my decision, and work have agreed I could WFH full time in the last few weeks. If I had to be around people I’d have taken at least 2 weeks off before surgery just in case. I’m fortunate as the prescribed iron has really helped with my tiredness and I feel almost normal (if not highly paranoid about moving or bumping my tummy).

Best of luck this morning. Let us know how it goes.

I also had a nice weekend after, we stayed home for the most part to avoid any germs but I went to Sofology and looked at all the lovely big corner sofas I can neither afford nor fit in the living room 😂

[thereisonlyoneofme]

Yes, to the dental checks. I wasnt told that I should get teeth checked before chemo and due to that and covid I have been taken off my NHS dentists list as I hadnt been for 2 years !

[HelpIcantfindaname]

@AGreatUsername @Silkierabbit @thereisonlyoneofme @MrsWooster

Thank you for your messages.

@Silkierabbit I hope DDs gcses go well. I love that part of the coast. Bamburgh is one of my favourite places.

We saw the consultant.

They will operate to remove the tumour & fingers crossed I shouldn't need a stoma bag afterwards. The lymph nodes beside it are enlarged, consultant said there is a high chance I'll need chemo after.

First step is the MRI of lesions on my liver. If they are cancerous I will need chemo before surgery. And before that I'd need a small op to insert a stent so my bowel doesn't get totally blocked.

I still feel a bit in limbo as no dates for anything. MRI should be this week. I'm on cancellation list.

My school is closed today. I've emailed Head to say I'll be in all tomorrow as I've organised a Phonics Fun Day & it really needs the whole Year 1 team in. Then I'll do mornings for the rest of this week, it's the phonics screen & I don't want to disadvantage my kids by having someone they don't know administer it. If I caught Covid consultant said it would only put op back a week.

He suggested I tell school I may be off till Christmas. So I won't get my own class next year. 😢 That means I need to empty all of my own stuff out of my room - there's a lot!

Fingers crossed I get a scan soon..

[Thymeout]

@HelpIcantfindaname

So sorry to hear about your diagnosis. I had a hemicolectomy for colon cancer Oct 2019. Clear nodes and no mets but some malignant cells were found in soft tissue outside the colon, so top end of Stage 2. The tumour was in the
transverse colon. I was told the same as you about likely not needing a colostomy, and they were right. Do you know where yours is?

I had surgery first so no need for a stent, but they couldn't get the camera round the tumour and the doc warned me to eat a light residue diet until I had the op to avoid a blockage. Just wondered if anyone had mentioned that to you? Useful advice, but there's such an information overload it's difficult to take everything in.

After surgery, I was given the option of oral chemo. Only 2-5% benefit for me. I didn't finish the course because covid arrived, but my oncologist said the greatest benefit was in the early cycles. Tablets on their own are more gentle than chemo for other cancers. I didn't lose my hair. Just a bit of neuropathy. But I think if they do it before surgery it will be a combination of 2 drugs by infusion and side effects are different.

Happy to answer any queries and hoping for positive news from your MRI.

[AGreatUsername]

Can I ask a really stupid question?

As it is now pretty much confirmed I have ovarian cancer (although I’m still going to hold out that very very tiny hope that it’s not until post surgery) is this what will kill me?

IF it is confined to the ovaries as suspected (although there is a possibility of omentum involvement and they could find anything during surgery) is there a chance that removing it all will render me cured? Or are you never cured and it’ll always come back?! I don’t even know how this works. I think a really high number of OC survivors have recurrence but is there any chance I’ll live out my natural life span? Or am I looking at a hugely reduced life regardless now due to this?

[Runningwithoutstopping]

Hi @AGreatUsername I was diagnosed with stage 4 fallopian tube cancer (falls under the ovarian camp) in 2020. I had treatment with chemo and surgery then maintenance with Avastin.
The question of re occurance is never far from my mind and in all honesty I can't answer your question because I don't know. My oncologist told me at diagnosis that I would 'get to see my son grow up', I have never had the courage to ask how old he thought a grown up child was.
Everyone on here will tell you that once you get a plan of treatment moving forward seems more manageable and in my experience that's true. Stay away from Google it will only scare and depress you and most sites have certainly written us off
Treatment was tough but far better than I was expecting and 2 years later I'm still here and No evidence of disease(as far as I know).
My advice is to try not to project to far into the future right now you need to focus your energy in putting one foot in front of the other to get through this stage.Easier to write than to do , I know.
Ovacome is a good source of advice and support also I have used PennyBrohn who are based in Bristol (but they do have a website) for support
I hope this is reassuring and please if I can help message me x
Ps no question is silly and my should always ask x

[Runningwithoutstopping]

*you should always ask
Auto correct hates me!

[AGreatUsername]

@Runningwithoutstopping thank you for that reply. I posted in a moment of panic. I do so well holding it together but then sometimes just feel complete horror that I may not see my children grow up or do the things I’ve planned. It’s so hard to pluck up courage to ask the consultant anything because I don’t feel ready for the answer.

im having a crappy day today, my husband is struggling with things too and I feel like I just can’t take the weight of reassuring him all the time when I’m having a bad day too. Ugh.

[Runningwithoutstopping]

You both need support but it is quite understandable that you can't be that support for him would he phone Macmillan to see what is open to him or speak to his GP?.
You also need an outlet and a safe place to fall apart. Life has handed us the shitty end of the stick and none of us should have to cope alone x

[Runningwithoutstopping]

I'm no good at links but I hope this helps
You can call the Ovacome support line on 0800 008 7054. We are open Monday to Friday, 10am to 5pm.

[Silkierabbit]

Great Its really normal to be terrified for survival chances when you are first diagnosed. If you are feeling up to it cancer research has some data www.cancerresearchuk.org/about-cancer/ovarian-cancer/survival

But remember the 10 year data maybe from 15 to 20 years ago and survival rates have doubled in 40 years and new treatments come out all the time so it will be quite a bit better than these stats, maybe add 50% to survival rates though best to ask oncologist.

[Silkierabbit]

9th chemo yesterday and was really awful as one general receptionist starting having a go at me as I am exempt from masks due to anxiety but no covid symptoms and tested neg and waiting to go in, in front of everyone. But its over at least.

Hope you are ok Mowly.

[Silkierabbit]

We are nearly at the end of thread so I have created a new one, hope that is OK.

www.mumsnet.com/talk/general_health/4564719-cancer-support-thread-83-here-comes-the-sun-hopefully