Cancer Support Thread #81 Newbies welcome

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This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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@Happydaysandhappysmiles what I’ve done when waiting for tests scans results etc is keep busy
Try wordgames tidying watching rubbish Tv going for long walks
Anything to break the worry cycle
I really feel for you waiting to know is in my opinion the worst bit
Once you know either way it’s somehow easier
And most breast lumps are benign
Sending you good vibes

@Happydaysandhappysmiles

Sorry you're here, but you may well just be a brief visitor so go easy.

I've had a very quick pathway on the NHS - Monday this week I saw the GP, referral the same day, a friend then suggested I phone to be added to the cancellation list. I was told there are lots of cancellations coming through, but also lots of people waiting to be seen. I then had a call on Tuesday afternoon to go in that evening. I was then given the terrifying outcome that it is cancer, but tonight I'm feeling more positive than last night so I'm taking that.

I also phone Nuffield about going privately - they couldn't give me such a quick appointment as you have been offered, but they did say that private/nhs paths are completely separate. She said you can't start off on the private route then take your results over to the NHS, you'd have to do them concurrently.

Maybe a good idea to see if you could get on the NHS cancellation list? Sending lots of positive vibes your way.

@MrsWooster I'm with you on this! I'm slowly getting my head around the idea of cancer, but the idea of telling the kids is terrifying. I was meant to do a very brief chat last night with my husband, but it didn't feel right. I'm going to wait for Monday's appointment when I know more then gently feed them some information. I think a bit of me feels like it's not really happening if they don't know, easier to pretend.

@holdtightandenjoytheride sorry to hear your news and sending big hugs your way. Thank you that is very helpful as I had thought that I could nip from private to nhs if I needed to. I will ring the nhs clinic tmw and see where I get to.

Happydays Sorry to hear that you are being tested. I would phone the NHS hospital and check how long likely to be and if you can switch in from private. I looked into this and the NHS said you could switch in from private and not repeat tests but in the end wasn't convinced would be much quicker as can go back via GP. They told me if I used one of their consultants who worked in NHS and private could transfer via them directly, I think that is not supposed to happen in theory but they said it happens a lot. Though if its likely benign private would give you reassurance more quickly. The NHS told me to cancel my checks with them if went private though I would not do that until you have the all clear. I did like the one stop shop, well as much as you can like cancer checks, it was efficient and they told me I had cancer end of that day.

At the beginning of my ovarian adventure, it was 10 days between visit to GP and seeing the Gynae consultant at my local hospital (aka Dr Dud). She refused 'to speculate without scans' and used up the time taking my medical history. Just told me it was big and might not even be Gynae.
Appointment for scans was over the 2 week guidance and I rang GP to ask for a private referral. She strongly advised against. 'Things get lost. Save your money for a holiday when all this is over.' She then rang the hospital and managed to get them to bump me up the queue a bit. (Pre-Covid.)

I know someone who started off private in Cambridge. Was investigated for piles but turned out to have advanced prostate cancer. Private consultant also worked at Addenbrookes. Transferred to NHS and saw same guy, after paying £££ for scans and tests. Seems to have missed introductory sessions with support staff. Took a long time before he was given keyworker, Macmillan, option for psychological help. At least, compared with me and colo-rectal diagnosis. Difficult to know how much Covid has disrupted protocol.

Re one-stop breast clinics, the one at King's is excellent. I was told when I arrived, 'You WILL have a result at the end of the day.'

Anyone not having chemo, my GP is giving out shingles jabs. Worth asking if you're interested. They do give them to chemo patients, too, but it needs to be a non-live version.

Went to Addenbrookes today for 2nd ct to see if cancer at stage 4 or stage 3. Was supposed to be doctor on Friday then 2 week wait for surgery but the nurses said I have to wait for Mon 20th to just have video talk with nurse to say if at stage 4 only no treatment plan, after that I can see doctor then a 4 to 6 week wait for surgery with no treatment before then. Complained and was asked again if I would like some mental health support from a charity and tough, said quicker if go private. I sent complaint in via pals, says we are busy, delays in replying and sent to MP and MP I know. May need to go private but you really should not have to.

So sorry to hear this, @Silkieschickens. Thoughts are with you and anyone else unlucky enough to be waiting at this time. Cancer is bad enough without having it during a pandemic.

Thanks Thymeout Just going to see if can get treatment faster privately, have no insurance but need to get treatment. Am trying complaints route as well but sounds like there are widespread delays. No idea why they won't even let me see a doctor though, its been 3 weeks of trying to see if at stage 4 or stage 3 and I can't speak to a doctor at all and no date for when I can other than after 20th.

@Silkieschickens unless you have a lot of savings, I would hold off having private treatment. I see how much it is costing BUPA for my treatment and we are over £100k already.
I had 6 weeks between diagnosis and starting treatment, I know it’s frustrating but they do like to have all the information and discuss it at MDT before they begin a course of action.

Its going to be about 3 months before they start treatment from what nurses said though a month into that already. I do have a lot of savings but they are intended for retirement but if it goes to stage 4 by delays its incurable. I would be going private for surgery only but just spoke to private doctor about adrenals and he said hospital should have run hormone tests and also hospital will not make appointment for me to see doctor even though doctor and ct scan said I need one asap. I am going via pals etc but delays on that. Thanks for your help.

@Silkieschickens the wait for a final staging from the CT scan is a bit longer than I would expect and I can only think it's because your case is a bit less straight forward (unusual). Usually there is an understanding that this staging has some urgency, mentally if not medically - I know I found it possibly the single most anxious wait (and came out at stage 3).

Realistically, 3 months is not going to make a difference to your outcome - it's not going to shift you a stage. The problem is the understandable mental strain.

Personally, I wouldn't go private for surgery without insurance. Very likely it will be the same surgeons and at this rate - you are only going to save maybe 3-4 weeks. I now the 20th must feel like it's years away - but you're nearly there.

Thanks - the trouble is it would already have been stage 3 in May as it was affecting the skin and huge lump then, initially thought maybe covid vaccine or would go with period and called doctors in June who dismissed. Then referred start of November. One of the issues is I can never talk to a doctor there so I have many questions and no answers. I have tried pleading but they won't budge. I would feel happier if I was on something like Tamoxifen whilst I wait but I can't get through to anyone and looks like will be a months gap in being able to talk to a doctor. I also want to know will there be more adrenal tests - I paid to consult a private doctor and he said they should have ran hormonal tests. All these things cause more delays as they have to go through committees each time and noone is asking anything now. I had to chase CT to get it booked, I had to get my last CT from other hospital, nothing is happening unless I chase. I am being told they will do things then when you phone they say they won't and also I cannot see a doctor.

I have put in a complaint via PALS and phoned CT myself as I am getting nowhere with breast clinic and they told me my CT results were sent back already so that is not the hold up now. They said I should be given an appointment with a doctor but I phoned and they are still refusing to do that. But PALS are chasing them now. I did manage to find out today they have not put me on this week MDT but next weeks which is on Monday. But I am really unhappy about things there. If it would speed things up 3 or 4 weeks I would pay to go private but I don't know if that would be the case or not. I have left a message for Nuffield though all the privates seem to be pay £300 for a consultation and then we will tell you.

I am supposed to be doing some work for an Australian who is very famous over there and I had to tell him as I am having to spend all my time chasing, going to hospital, crying, updating people etc and he messaged someone famous in the UK so I woke up yesterday to a message from them and an offer to talk with someone very senior in NHS but they are not oncology. It was really kind of him to try. At least the nurse I spoke to today was kind, spoke to 2 last week who were not nice at all though long, very busy days I guess.

Well emailing the Chief Executive worked, got results a week early and surgery will be early January if mastectomy only, a few weeks later if want IBR so going for earliest one I think. If do delayed reconstruction they said its a 12 to 24 month wait but stc due to covid. Apparently will be day surgery, probably no drains and no nurse coming round to house. Dont need to see doctor again, no 2 week isolation, just 3 days though all stc with covid but isolating anyway. Very relieved.

Pre op tomorrow, surgery Friday

Silkie, I just want to acknowledge your post and to ask how you are feeling?

Thanks - really happy now

I've not been on the thread much of late as it's been a year since my diagnosis and it's made me feel weird remembering the mix of christmas stuff going on at the same time, e.g. getting the cancer confirmation call while doing a Tesco christmas shop! Also trying to navigate the festive season this year whilst juggling treatment, fatigue & brain fog feels like an uphill battle.

Anyway, just wanted to add to the thread that I never had any communication about an actual staging of my cancer at any point, nor did I ask. I gather it was 2b from what I read. I think they are moving away from that terminology gradually as these things are so individual-dependent, and incurable does not necessarily mean you are on a definite countdown to the end; particularly with certain types of breast cancer, some people are living up to 20-25yrs with mets. I've arbitrarily decided that once I finish targeted chemo I want 5yrs without anything new happening to make the treatment I've had so far "worth it". I don't know why I've set myself up with that thought as it's not particularly helpful (probably something to do with the 5yr recurrence figures) but I can't shake it.

@Silkieschickens wishing you all the best for Friday Xxx

Hello all, I hope you don't mind me stopping by. I've just been referred by my GP for an urgent ultrasound on a big lump under my armpit. She seemed quite puzzled by it. It's a good 3 inches diameter but not sticking out a huge amount, doesn't feel hard and isn't red or hot. So she thinks it's unlikely to be an infection, but I have antibiotics in case (I also have sinusitis so they are to try to treat both things). I am prone to lymph node swelling with sore throats, but I've never had anything like this before.

I just wondered if anyone had a lump like this that turned out to be cancer? My feeling from the GP appointment is that it's unlikely but not impossible (otherwise why would the scan be urgent?). My insides did a flip when she rang through to make the scan appointment and said it was urgent. (I'm not in the U.K. so not going to a breast clinic.). The scan is next week with a radiologist who will hopefully give me the results at the time.

Thanks for any help and very best wishes to you all. I'm 54 by the way and my first mammogram (18 months ago) was clear... probably irrelevant now.

Thanks Fizzy

Slave My lump was in breast and rock hard. Hopefully yours will be benign - I did read somewhere but no expert on this that you get lumps under armpit after the covid vaccine on arm vaccinated on, if you had that recently. Definitely get checked though but hopefully an innocent explanation.

Holdtight How did it go yesterday. Hope you got the all clear and if not its been caught early.

Thanks Silkie - that's reassuring and seems to be the case for others too. All the best for your surgery.

Hi everyone. I'm so sorry to see so many poorly people.

This is my third time joining in and I am worried it will be third time unlucky. Years ago my worries of cancer weren't right, I had a clear mammogram last month but today I have been referred under the two week wait as doctor is worried due to years of irregular bleeding. She's concerned about an abnormal smear I had but that was years ago. I should be having an ultrasound next week and have had an exam today.

@Silkieschickens That’s good to hear about your operation.

@SunshineCake1 I hope the bleeding is something other than cancer, it’s such a worrying time xx

@SlaveToTwoTabbyCats Sorry you find yourself here, I do hope it’s just a short stay.

I saw my gynae oncologist this morning, the area where my tumour was is now almost completely healed. There was scar tissue she could feel last time 3 months ago but that is much smoother now. I’ve got another year of quarterly visits before it goes to yearly.

It’s almost a year to the day that I started treatment, Wednesday 16th December and hopefully I will get my results on Thursday to say my surgery was successful and I can move to radiotherapy in January.
I’m desperate to finish, put cancer and the extravasation complaint behind me and go back to work. I’m also organising some therapy, I need to actually get a referral from one of my doctors to send to BUPA.