Two-week cancer pathway - support while waiting

[BadLuckNameChange]

If you’ve been referred for the “two week pathway” for suspected cancer, maybe we can support each other through this wait?

Anyone else? Need to share their frustration or fear? Poll is just to see how many of us there are.

I really didn’t know quite where to put this because it’s not “cancer” but it’s not anything else. I already feel like my body is a wreck of two very different autoimmune illnesses and I just want to scream, “I can’t have cancer! I’m ALREADY ill!” I’ll find out if it’s cancerous or not on 5 September when I get the scan, scan reading, and any biopsy needed.

I’ve been on it twice. Once was positive (I was told alone in Covid) and the second was nothing.

the stress. The fucking stress. I hear you.

I do think we are so lucky to have this pathway in place though.

@BerryBlastStrawberry Oh god, we’re incredibly lucky to have the pathway, I agree, and I realize how fortunate people are now vs. people like you who had to face it alone, or even had treatment delayed, during Covid. I’m sure the stress of that was awful. But yes, this sort of lurking, creeping sensation that I know is just pure worry made manifest - it’s no wonder stress kills, sadly. I do hope you’re doing well now!

Can I join?
I went to bed 2 weeks ago and woke up with severe chest pain, hubby called 111 and paramedics came out at 3am. ECG and all stats were fine, but they advised me to go to A&E for a blood test (on the safe side). Another EC and blood test later were all fine but doctor ordered a CT scan. It turned out that my chest muscles had swollen, but CT scan picked up a lump in one of my breasts. GP called me in next day for examination and referred me on 2WW pathway. Had appointment at breast clinic on Saturday and 2 mammograms, ultrasound and biopsy later, just waiting for results. Consultant told me he doesn’t know if cancer until results come in.

Same 2 week pathway has happened to me, twice.
Most recent was postmenopausal bleeding. Was nothing, just a "last hurrah" glitch. The first-time was a lump in neck - was pre-cancero7s something or other, surgery needed but nothing bad.

I found keeping busy was the only thing that helped!

@justwannabeleftalone Of course you can join! You’ve really been through the wringer already, haven’t you. And I’m sure the wait now is excruciating. Please, share anything that you need to with us.

@Saz12 Thank you for the positive story! And yes, definitely discovering that keeping the mind busy is the most important part

PS - check with hospital ir GP if your appt doesn't appear after 10 days or so. Our local nhs downgrade some 2ww referrals to improve their published waiting times, which they're not supposed to do. If you or GP chase up, then you're likely to get a "cancelation appointment" just within the time frame.

Great post. We think this happened with DH and it did turn out to be cancer.

After the initial results, his surgeon was fantastic about keeping everything moving very quickly, however.

@Saz12 Great point for anyone waiting for their appointment, thank you!

@poetryandwine So glad the surgeon was on top of it once your husband was in the system.

6 days until my appointment now but I’m bedbound today from my other conditions; breathing is a fucking disaster 😂

And @EggandStress @Namechange822 @Mynewnameis please know that I’m thinking of all of you.

And @CakeIsNotAvailable ! I hope your appointment yesterday went well. You absolutely don’t need to update MN, especially if you don’t feel up to it. Just know that we’re all hoping for the best for you.

Oh and @mindutopia , I’m so sorry you had to go through a wait like that. It’s ridiculous. And thank you for your very kind advice, as someone who has been there. Unfortunately, I’m already bed bound part of the time from my other conditions, so I think hiking might be out of the question, but I will definitely take into account your advice to keep busy, and will be doing everything I can to start improving my stamina, regardless of the test results, since this has just highlighted how weak I’ve become.

I hope you get some relief soon, @BadLuckNameChange

@BadLuckNameChange oh goodness that sounds so hard ,I can't imagine being stuck in bed during the waiting period.
I guess you have your usual methods of getting through a bed bound episode but if you're feeling rough as well I can't imagine how you're doing.
Do you listen to podcasts ?
I'm a big fan of BBC sounds and have just found this
https://www.bbc.co.uk/sounds/series/p02s5rx7?partner=uk.co.bbc&origin=share-mobile
about the journey of a ship during the pandemic.
The narrator is brilliant, great story teller, lovely voice.

Sorry you’re feeling rough @BadLuckNameChange

I have forced myself to take a step back from the worrying this weekend (which shows I can if I put my mind to it).
I’ve got my grandchildren staying and I want to give them all of my attention. We’ve got a day out today and then I’m taking them home so I’ll be exhausted by this evening I expect. Then back to work tomorrow.

Keeping busy does help.

@matthewstirling your description of niggling pains really resonated with me. As soon as the GP had put me on the pathway I started getting pains and symptoms that I’m sure I hadn’t had before. I know I am very suggestible when it comes to health related stuff.

I have decided to ring the gynae unit tomorrow to see if there’s an update.

I saw the Gp on 13th. Ultrasound on 14th. Blood test on 26th but heard nothing since then.

@EggandStress I hope the gynae unit has some answers for you today!

Thanks @BadLuckNameChange
How are you doing today?

Ive just phoned the hospital. No news. Blood results are with the consultant so waiting for them to look at them and make a decision.

I’m not feeling well today. I had terrible acid reflux during the night and was awake for hours. I’ve taken the day off work but that makes me more anxious because there’s always so much to catch up with.

Urgh. I need a bit more sleep.

I hope everyone else is managing their symptoms/ anxieties/ waits.

Thinking of you, @EggandStress

@EggandStress I know, the waiting can just drag you down. I’m so sorry the hospital didn’t have anything for you yet. Please know I’m thinking of you.

I wish I could give you some of my sleep! Slept from 1430 yesterday to 1730 today, so I haven’t taken my medications. My disease is really difficult and depressing when it’s like this, and husband is worried as hell because I’ve missed about four doses of my medication (I either need to sleep or medicate, so I should be fine, but of course, it’s ideal to medicate instead of sleep. I just don’t always get a choice with my body). But to be fair, sometimes I’m up all night with pain so it’s such a random thing.

How are you doing @BadLuckNameChange ?
I hope your appointment goes well tomorrow. Will be thinking of you.

@EggandStress Thank you so much. I think most of the nervousness is over. At this point, I’m expecting it to be negative. I just can’t imagine having everything I have wrong with me AND cancer, so I don’t think it will happen. Still nothing new for you?

Good attitude @BadLuckNameChange I will keep everything crossed that you’re right.

No news from me. I have got less anxious over the last few days. I think my body couldn’t manage to sustain those high levels of anxiety any longer. My digestive system has been absolutely haywire which I have put down to anxiety but then sometimes think that it’s actually cancer symptoms.

Anyway all the best for tomorrow. I hope you can have a restful day today.

All the best today @BadLuckNameChange

I've had some news which is good news. I got a letter yesterday telling me that they’ve diagnosed an ovarian cyst. I’m off the 2 week pathway and I will have 4 monthly ultrasound / blood tests for a year.

I’m relieved! I do have some questions and I’m a bit surprised at how little information I’m given (size of cyst, which side? But maybe these things don’t matter).
The letter states that CA125 is low but not the actual reading.
I do struggle with health anxiety and because of that I overthink and can doubt information I’m given.
I’m trying not to get caught up in that thinking.

Hope goes okay today @BadLuckNameChange

Great news, @EggandStress !

Still thinking of you, OP

You should email the consultant secretary and also check your NHS app and see your GP to see if they have more information. They should tell you what side and also the size. You could ask to be put on a list for removal if its sizeable, or ask about the plan for treatment if it remains over 8+ months. They can just shrink on their own, but also may not so I'd be asking about what would happen if it doesn't shrink.

But I'm very glad it's not cancer and that they've gotten you on a set scan/check plan immediately. Don't worry about CA125, as even when it's high it doesn't always mean cancer. So if its at normal levels, I'm sure it's fine. But if you want to ask the GP, or ask the hospital to give you the report as well, and see if its on there.

I had the consultant appointment this morning; she was very reassuring, but I am being booked in for a hysteroscopy (it will probably be within 2 weeks). So onto the next stage of waiting. Good luck to all those on the pathway..