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.

That sounds pretty good, @ReFuots . How are you holding up?

@poetryandwine Thank you.. I don’t really know how I feel - a bit numb by it all, to be honest. As a family we have had a really difficult year, and it just feels like ‘oh no, not this as well’.. but I suppose all of the other stuff going on is at least a distraction (so many plates spinning that I don’t really have time to focus on this most recent ‘plate’ of my own).

The consultant seemed really on the ball, and gave me statistics, which all sounded really good. But she did say that she hadn’t looked at my scan images yet. So it was just the generic stats I was getting from her - I will find out in next few weeks (with results from hysteroscopy) which side of the stats I fall on. But at least she has made me feel more hopeful in the short term.

I was expecting really bad news today, actually. Not helped by the fact that the GP practice has texted me several times about the referral (made following the results of GP-referred ultrasound), initially confirming the referral has been sent to ‘rule out cancer’ and including a link to the MacMillan website, then another couple of texts at intervals telling me to chase the hospital if I hadn’t had a date for the appointment as it was an ‘urgent referral’. I have been on 2WW pathways twice before (for breast lumps), and don’t remember being sent links to MacMillan, or follow-up messages to chase the hospital.

So a seed of doubt remains that the consultant just wanted me to try and stay calm until the hysteroscopy results, so said she didn’t look at the scans, so she could give me generic stats?? But am trying to squash those type of thoughts when they arise!

So I will try and avoid googling in the meantime, and try to have at least a couple of weeks of feeling hopeful, until I actually find out…

By the way a consultant radiologist will have looked at the scans by now most likely, even if the consultant gynaecologist hasn't. Scans go to consultant radiologist’s first and they write a report then it's sent to the consultant for that speciality. So if anything major had been caught it is normally flagged by the report, to the secretaries. It's likely that it's unspecific from the scan (as to benign and something else or cancer).

@TheLivelyViper the ultrasound was requested by the GP, and I realised this evening that the radiologist’s report of it is in the NHS app, so I have read it. There are some specific things in there (with measurements etc). Trying not to panic!

Hi everyone, hope all you lovely ladies are ok and not too stressed.
thought I’d come back to give you a quick update.
my 2 week wait for biopsy results is up tomorrow, but still not heard anything. How long do they normally take, not sure?
anyway, I’m taking each day as it comes and trying not to worry until I get the results.
still on the pathway for now.

Measurements are normal most of the time, like it will say your uterus probably and other things. Even if it was put of range that can just be normal bodies being different, the measurement of a cyst or something else doesn't indicate whether it's benign or cancerous either. It could be a large dermoid cyst for example, which wouldn't be cancer. Try and balance a negative catastrophising thought with a positive/realistic thought using the stats you got from the consultant.

Sometimes (with good instructions to - "only get information from credible medical info like NHS website, mayo clinc, cleavland clinic sort of websites"), AI can be good but you have to ask for just what a term means in NHS/medical lang/notes. Also ask it be realistic and evidencal.

Also if you had the inital referral from an ultrasound. It makes a lot of sense why hysteroscopy is needed to get more definitive ideas. As an ultrasound can't tell us about cancers or not all of the time. Is it suspected uterine cancer then? Don't panic please, if you're someone for which information doesn't help, don't look at the app at all. I'm more the opposite but distraction can be the most helpful thing rn. Wishing you well.

Hi all. I’m in the all clear! As we thought I hopefully would be. It’s most likely a VERY angry lymph node, or nodes, and I just have a “growing” amount of asymmetry. No answers and no idea who I see about a sore lymph node (?), but those are small problems for Monday.

@EggandStress So glad to hear about your good results! I had a complex ovarian cyst removed and it was a bit difficult and sore for a day or two after, and then right as rain.

@ReFuots So sorry to hear that you’re still “in the middle” of it. I really hope the bysteroscopy turns out to be just fine! I know the wait must be so difficult.

Thanks for checking in @sittingonabeach

@TheLivelyViper Thanks for your message, i really appreciate it. Suspected gynae cancer (endometrium 10mm; lesion in cervical region (with measurements / description etc from ultrasound). If cancer, not sure which one would be the primary. I have kept on top of my smear tests - last one was maybe 1.5 - 2 years ago; never had anything abnormal reported… oh well, just have to wait and see.

Very pleased it's a good result, it may be the lmyh nodes are having issues due to your chronic conditions or any meds you take. I have lots of chronic conditions and this can happen. For example I've asthma since I was born (with ups and downs of stability) but it is sensitive to some meds sometimes, so resp and my other doctors had to adapt a med plan, dosage and schedule. Even without that sometimes the amount of work my body has to do, to try and function can make that part of the body more exhausted, neglected and so go out of good management regardless.

Could you get a smear done by your GP soon? Like just to check? Or maybe a sexual health clinic (less sure about if you can do that). I'd say that it could be for the cervix it's just a change of cells, like cervical etroption. But if both were cancer it would depend on stage. But cervical cancer is extremely slow growing (that's why the 5 years new guidelines aren't a problem, and been the norm for Scotland and Wales, and scientific research had found it is a good baseline and 3 is no longer needed (except for those at high risk) especially now with both boys and girls getting the HPV vaccine.

Also if you do have any other symptoms then I'd made a list (try to distinguish if it could be anxiety of you have cancer and then feel symptoms to ones that you feel more certain on, or had before the referral. Why were you referred for the ultrasound in the first place by the GP?

That’s brilliant news @BadLuckNameChange

Im recovering well from my operation and have a meeting on the 18th with the consultant where I should find out exact diagnosis/treatment plan etc.

@BadLuckNameChange that’s great news. I hope you have a peaceful weekend.

@ReFuots sorry there’s more waiting for you. Waiting and uncertainty is difficult to manage. I hope you’re busy or relaxing (whichever works best for you) over the weekend.

All the best @justwannabeleftaloneI hope you get some answers soon. Would you feel able to call the hospital to chase it up?

Glad to hear you’re recovering well from the op @Namechange822 I hope the waiting period isn’t too stressful.

Thanks all for your messages, and great news for those in the all clear. And solidarity / strength to all those of us still waiting for results / on the pathway x

@TheLivelyViper Postmenopausal bleeding prompted referral to GP. The lesion seems quite large (from the measurements on the US report), and they are planning to remove it, so i will find out exactly what it is, within (hopefully) a month.

I have a busy / stressful weekend ahead, so no time for worrying, at least!

I am also very sorry you are still waiting, @ReFuots . It’s hell.

Can you (try to) treat yourself very well during this time? I know that only goes so far but, with apologies for generalising, in our experience waiting for things to start miving for DH, it does help a bit.

@justwannabeleftalone At the risk of ignoring your name, I wanted to let you kn ow I’ve been thinking of you, too. Your original story was particularly scary.

I hope you haven’t felt ignored - gently, the name made it unclear to me what you wanted.

I’m glad your wait is almost over. Very best wishes

@poetryandwine Thanks so much for the message. We have lots of family issues at the moment. It just seems never ending at the moment. But I will be having a break next week for a bit, hopefully..

I was on the 14 day cancer pathway in April.
it was for endometrial cancer.
I had been for the internal and external scan as I had irregular periods (I was 50 at the time and had been on HRT) I too have chronic fatigue/fibro/auto immune illness.
The Gp rang me to say I was on the 14 day pathway and then I got a letter later in the day with an appointment for the following week.
The next day I received a phone call and it was being treated as a matter of urgency and I was to go to the specialist department in 2 days time.
on the morning of the appointment I was bleeding v heavily, I rang to ask what I should do - I was told to still go and they’d assess when I got there, got there long story short I saw a fabulous consultant with 2 excellent nurses who still performed the camera (I was embarassed as there was a lot of blood and I could see it on the camera), I had 5 biopsies taken - went home had fish and chips.
Before my initial appointment date which had been cancelled as I’d had an early appointment I had the results and the all clear too.

It just gets things done in a short space of time and in between the times I thought as I was in ‘no man’s land, I was going to make this time enjoyable so if I got bad news I could think about that time and have that as my target to get back to.
i journaled a bit in a notebook about worries and how I would address them.
treated myself to some lovely shower stuff and indulged in some pampering.
started to read a book thinking if I had time to read later I’d be settled into it and began watching Downton Abbey in case I was to be resting for the long haul.

The NHS really is bloody marvellous.

Fingers crossed for you all x

@Holliegee so glad to hear things turned out so well for you. Yes, the NHS is marvellous.
I will definitely try and follow advice about trying to relax.

How are you doing @ReFuots

How about you @justwannabeleftalone? How’s things with you?

Hi everyone, thank you for the mentions.
im still waiting for biopsy results, it will be 3 weeks tomorrow I did call the hospital yesterday and spoke to the consultant’s secretary who told me I should receive a letter soon.
im hopeful it will not be bad news.
im thinking of you all

@justwannabeleftalone Hi, that will be a relief for you, sounds like it has been a long wait. Sending good thoughts your way!

Thanks - trying to stay positive. I have a hysteroscopy next week, so might find out some more then, or it may have to wait until biopsy results are back. Still slightly numb - but I suppose when you know what you are dealing with, at least the uncertainty goes. Am trying to get some key deadlines out of the way beforehand, just in case the wheels do come off a bit, in the coming weeks..

I hope the hysteroscopy goes well, it's all GA isn't it? I'd be hoping so as they're doing a biposy. At least then you won't have any discomfort. I hope the week goes well, try to watch something interesting or find a good hobby to keep your mind busy, and give us an update on how it goes. Wishing the best for you.

@justwannabeleftalone The letter will likely be sent to you and your GP so maybe check the NHS app (depending on where you live) in a few days or don't if you want to get your GP to give you a breakdown of results. Wishing you well.

@TheLivelyViper No GA - ibuprofen & paracetamol an hour beforehand.. I had an aspiration biopsy taken last week, but likely another biopsy at the hysteroscopy. I have had other procedures in the past (one of which was a hysterosalpingogram), so I am hoping it won’t be too painful (I have quite a high pain threshold in that region!). Lots of stuff on at the moment (kids & elderly parents) so not too much spare time, but I will try and squeeze a little window of time to try and relax..

Try if you can to get diazapam or Co-codamol to also take because for some if can be quite painful, at least with that it should make it pretty okay. Where was the biposy from this week taken from? And for the one next week where is that one going to be taken from? Hopefully having a lot going on might make you distracted but maybe try and have some relaxing time if you can.