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.

Very sorry to hear this. How are you doing, @Mynewnameis ?

Sorry to hear that @Mynewnameis. How are you feeling about it?

I’m so sorry to hear this @Mynewnameis. Do you feel that the doctors have given you enough information or are you still waiting for more? Either way, I know it doesn’t necessarily make it easier.

Sorry to hear this @Mynewnameis
Please talk here if it helps. Take care.

I’ve just deleted my NHS app. I’m driving myself mad checking it all the time. Was this a stupid thing to do (to delete it)?

Was it so you couldn’t check for test results, @EggandStress ? When DH had cancer all relevant results were sequestered where he could not see them.

You can always re-install it.

Oh that’s interesting @poetryandwine

Yes I’m waiting for results of a blood test which will inform what happens next. I don’t want to keep checking.

I just want to say I have been on 2WW a lot of times (breast, skin, uterus (x3), colon) and have never been diagnosed with cancer. Apparently 95% of 2WWs are not cancer. I'm very grateful for fast checking of symptoms just in case, it's a good system but does cause worry. I have managed to stop worrying so much with a 2WW and try to forget about it as much as possible during the wait.

All the best to you all and 🤞you too are in the 95%.

Thank you @Chewbecca that’s quite a list! I’m glad to hear it turned out ok for you, each time.

I’m grateful for all crossed fingers!!

I know how difficult it is!

Best wishes

I am waiting for one result from lab a stain test. Have MRI on Tuesday to see extent of the breast cancer as it wasn't one that shows well on mammogram

@EggandStress Oh yes, please don’t feel stupid for uninstalling the app. We’re all just trying to do the best we can, and I think most of us would do the same: 1. Drive ourselves crazy checking. 2. Delete the app. 3. Quietly re-download the app. I’m in Scotland so we have no app! Just have to wait for people to call with results. I can’t believe how “un-digital” it is sometimes.

@Chewbecca Wow! That’s a heck of a list! I’m VERY glad to hear you’ve been negative each time! And yes, for anyone waiting, the stats are often given as 9 out of 10 people will be cancer free, and 95% is even higher.

@Mynewnameis Oh gosh. Bloody hate MRIs. Give yourself a treat for just making it through this stressful testing phase; you deserve to be pampered a bit! Even just watching some favorite telly.

I told my husband tonight that I wasn’t sure if I’d have treatment, as I’ve mentioned before that I’m already quite ill with chronic conditions and he goes, “Of course you’d get treatment!” Like it never even occurred to him (note: I do not have DCs. That would be a very different kettle of fish). I don’t know. Maybe I’m crazy. I know I’m getting so ahead of myself but it’s hard not to think of this while you’re waiting, I think? Anyone else?

That’s a big decision @BadLuckNameChange I think there are so many factors involved in making a decision like that but obviously it is one of the many things that go through our heads in this waiting / not knowing period.

One of my repeating thoughts is about telling people - children and grandchildren for me. It makes my head spin.

I don’t have a good relationship with my mother and I imagine any conversation with her would end up being about how awful it is for her (and of course, it would be awful for her, but I wouldn’t really want to be hearing that I don’t think).

@BadLuckNameChange I’ve recently had a recall from a routine mammogram. The leaflet sent with the recall set out that I would have a further mammogram, ultrasound and then biopsy if necessary. Appointment could take 4 hours, could bring someone for support. But reiterated that most people getting recalled don’t have cancer. When I got there a nurse talked through the process, again stating most people won’t have cancer. She said results of mammogram and ultrasound could rule out cancer or indicate some types of breast cancer. Sometimes, they can’t tell for definite from these scans and a biopsy would be needed, and you would then get results within 2 weeks.

A nurse did my mammogram, which was a more thorough one than routine one and then a doctor did my ultrasound and after that she told me it wasn’t breast cancer and I could go home.

I have previously been on 2 week pathways before after being referred by GP and had non routine mammograms for cysts, which were benign, drained there and then and sent home

I hope all goes well with you

That would be quite a stark decision, @BadLuckNameChange .

Of course all kinds of thoughts are running through your head now, it’s only natural. And as you’ve not said much about your autoimmune disease we can’t know how that would impact treatment.

I don’t think it’s crazy but instinctively I hope it is a passing thought - at least for now. People do occasionally get prognoses where palliative care (and there is a lot more to it than making one comfortable) makes the most sense. Your doctor will know this.

But there is no reason at the moment to think you are there. And BC treatment has come a long way! I hope part of your thinking is a very natural fear of the unknown that can be treatment for advanced cancer - which is two assumptions (cancer and advanced) from where you are now.

DH had a very serious Stage 3 cancer some years ago, so serious that he will continue to be screened for life. (He has been fine since, knock wood) We dreaded the chemo but he breezed through it. You don’t hear so much about those stories but the young consultant in our family assures us that they are just as plentiful as the others. I am defo not being a Pollyanna here and I am very aware that chemo is difficult for many. Keep in mind that if it comes to chemo, you simply cannot tell how you will react. And you can ask your team ahead of time for tips. They were very helpful for DH.

Hang in there.

I was referred onto the two week wait pathway for suspected uterine/cervical cancer 8 days ago - the NHS app told me to contact the hosp if I hadn’t heard anything, so I did yesterday morning, and apparently I am likely to get an appointment within 28 days (and apparently there are quite a few people in front of me on the waiting list), they said they are waiting for the consultants to release appointments. So not exactly 2WW for me.

I am trying hard not to think about it too much (or google), but it has been such a difficult year all round that I can’t quite believe that this is now in the mix as well.

I have also been in the 2WW twice before (for breast lumps), and neither time it was cancer. So I am really hoping that the statistics are on my side this time as well. Sending strength to all going through this at the moment..

You must have nerves of steel @Chewbecca after all those referrals, wow that is a LOT.

All the best to you @ReFuotsThats a long wait but I hope it’s good news at the end of it.
I appreciate the chat here. My DH is lovely and loving but finds it difficult to discuss- particularly as it’s all quite abstract at the moment.

@EggandStress Yes, me too. My dh is of the variety that really doesn’t want to think / talk about things like this until they are confirmed - and sort of implies I am being neurotic if I mention it, so I have only spoken to him about it that first time (when I told him about the ultrasound results and the 2WW referral). So am feeling in need of a ‘space’ to share it.. So, thanks all x

@EggandStress While I hope for your sake that you don’t end up having to tell anyone anything, except that you got the all clear, IF it does come to that, please know that whatever you choose is correct. So if you want to inform your mother via text and then not answer her calls… well… but really, I know those people who make everything about themselves. When bad or good things happen in your life, you definitely have a right to choose if and when you share it with her.

@sittingonabeach I really appreciate you sharing how your appointment went. I’m going to the same type of four-hour appointment, and we already know I have a “something” that’s at least 5 cm and it’s really sore, so I’m hoping that’s a good sign (everyone keeps telling me that cancer doesn’t hurt). So glad you’re okay!

@poetryandwine Thank you for that. It’s really helpful to hear a positive story and I don’t think sharing it makes you Pollyanna-ish at all. And I’m really, really glad your DH is doing well. I know that I don’t want to be assuming that it is either cancer or advanced; I suppose the it’s a confluence of factors? The size, the position, the discomfort. Based on all those things, if it IS cancer, I would be deeply fucked (my autoimmune condition already required a surgery on my chest in 2019 and still causes me trouble breathing).

@ReFuots I’m so sorry you’re in this boat too! You are NOT neurotic for having worries. I mean, you might be neurotic for other reasons - I don’t know you, har har, but THIS is totally natural. Please follow what others have said and feel free to share here.

Thank you, OP.

Trouble breathing sounds a real bitch.

I will be pedantic for a mo and say that worst case, I don’t think BC surgery necessarily affects the chest. Groping for a silver lining, I know. Very much hoping you and everyone here waiting will get good news.

I was at the one stop clinic for a suspected breast cancer referral earlier this year. Mine turned out to be a cyst which was drained there and then. Just a few things to reassure

1. it’s no longer a two week wait under the NHS in England but an aim to diagnose or rule out within 28 days. That may or may not be reassuring.
2. the GP I saw was very brusque, poked me in the breast and told me that she was referring me on the cancer pathway. Just like that. I asked if it could be a cyst or something non cancerous and she said it’s not for her to say, I knew the procedure and that I’d be referred but the way she did it was brutal!
3. my lump felt hard and fixed which (having googled) worried me. The ultrasound person said it definitely wasn’t fixed but probably felt it due to its position.
4. the waiting is absolutely horrendous, I have pretty much given up my spring/early summer to worry. Once I had an appt at the breast clinic, I felt much better but still went from thinking it was nothing to planning how I would tell people when I was told it had spread all over my body and was untreatable.
5. while waiting, I had millions of small niggling pains, mostly in my breast, armpits and groin. Since finding out it’s not cancer, I’ve not felt (or noticed) them. It’s astonishing what the body can do when mental health is poor.
6. the appointment was very relaxed. I had an examination, a mammogram then an ultrasound. At the ultra sound, I was told it was a cyst and that I could go once it had been drained. And that was that. The drainage was fine and not painful and now my boob is as good as new.
7. I’m well over the magic age of 50 so statistically more likely to have BC than somebody younger.
8. probably about 40% of the women and some of the men you know (esp older ones) have had lumps and because they’ve turned out to be cysts or something else benign, they don’t bother telling us. We only find out about the ones that are bad news, and that includes on online forums. I told a few people I had a lump and several of them had had one themselves but hadn’t said anything as once they’d found out they were benign, there was no point.

I know I’m through the other side but remember that between 80 and 90% of breast lumps are not cancerous and that if they are, outcomes are fabulous, especially if between 50 and 65, they are fabulous at other ages too. Also, it’s normal to be utterly caught up with anxiety one day and feel fine the next. Hoping for good outcomes for everyone.

@poetryandwine Yes, I think maybe I’m being a bit over the top about worrying because my mum had (and survived) stage 4 breast cancer. But she had to have a radical double mastectomy and they told her reconstruction might be possible but she definitely decided against that after she got sepsis from one of the spacers for reconstruction. So we’ve had a really bad experience with breast cancer in my family (she lost part of her chest wall and had no lymph nodes on one side so one arm always swells). She got it pre-menopause. She’s BRCA negative, but now here I am, at a pre-menopausal age but I’m menopausal (only 41 but in menopause because of my autoimmune conditions), and I’m being referred for a niggling pain I ignored until I couldn’t anymore. And I feel like such an ass for not getting it seen to earlier but my only excuse is that I was busy being sick. I keep trying to remind myself, her BC treatment was almost 20 years ago and I hope they have a better way today than taking both breasts AND part of the chest wall. She has never physically been the same.

@matthewstirling Thank you so much for sharing this! I do hope some of the ache will just go away as soon as they say it’s benign, if you know what I mean. But I know you’re absolutely right, that the power of the mind is an incredible thing. And you’re right - we hear of people being on the 2 week pathway, we hear when it’s found positive, but we very rarely hear about the 95% of cases where it’s like your cyst or otherwise benign. I keep trying to remember that.

My appointment is one week away now. The good news is that my understanding is with the size of my lump, it should be much easier to tell if it’s benign or not.

Your mum sounds incredible, OP.

@poetryandwine She is absolutely amazing.