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.
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Some good news for some and not so good for others. Thoughts and prayers with all. I go into Addenbrookes on Thursday to have my brain tumour removed on Friday. It is getting a lot more real. I fell out of bed today! I think it would've been comedy if anyone saw it but did make me realise how downwards I must be going to have done so.

Hope your operation goes well Doofas How has Addenbrookes been, any delays or is it going OK. I am also at Addenbrookes.

Hope everyone has had a good a weekend as they can. Just a quiet one here, with roast dinner and pear cake and collecting things from shops, daughter out socialising but she is mid GCSE mocks.

Bob74 Hopefully someone on here can help you with that, I would go on the cancer websites and ask for recommendations as well as searching online.

I have been looking at private options but its very pricey without insurance and not sure if its worth it. Will try and call hospital on Monday and see if anyone answers will ask them about if delays.

I have been thoroughly blown away today at rugby this afternoon but DD’s team won against their nemesis team.

@Doofas good luck for Thursday, I hope everything goes smoothly.

@Silkieschickens I have insurance and went private but only after my diagnoses. The breast unit were great and still are, it was the gynae nurse that put me off the NHS.
You can always try to call the unit this week to see if you can get a cancellation.

Hello @Silkieschickens and @Doofas I'm part of your Addenbrookes party too!

Doofas I'll be thinking of you on Thursday/Friday!

Silkieschickens the clinic are squeezing in as many as they can and I've had several appointments rescheduled/moved forward by phone at short notice. I hope you hear from them soon.
Apart from that, I can say regarding my BC and treatment at the breast clinic is that things moved fast once I finally had a clear diagnosis from the biopsy: got told 3. Sept, had the wide local excision on the 30th and the re-excision and reconstruction exactly two weeks later. Both ops were day surgeries. Surgeon rang me as soon as she had the first pathology results to keep the tight schedule. I'm now 3.5 weeks post reconstruction, saw my surgeon on Tuesday and have my first appt with the radiotherapy team at the clinic tomorrow morning when I hope they will tell me the rest of the treatment plan.

Thanks NewlyDiagnosed that is really useful and sounds fine as a timescale. DH and I both wfh so can do appointments at short notice, only issue maybe our phone can be difficult to get through to as just have the mobile since our rabbit ate through the landline! And mobile is used for work calls but think will be OK.

I used to have private insurance at my last job and wish I still had it now but Addenbrookes is a good hospital, it was just crazily busy when I went to covid A&E a couple of weeks ago but would guess they prioritise cancer so shouldn't affect things too much by sound of it. In my old area you could go private on NHS and it was very civilised, much nicer food and own room but when I went private through insurance some of the bills were Though depends a bit what they find. I am trying to persuade myself its a rock hard cyst with rock hard fluid in it. The breast is going in by the nipple as I am aging more on the right side. And the rash well that's mastitis even though I haven't breastfed for 14 years.

My GP advised against private 'for serious stuff'.

A family member went private for the initial diagnosis but then discovered his oncologist also worked at his nearest cancer centre - which happened to be Addenbrooks, which has an International reputation - so there was no point when he could be seeing him for free, with all the NHS add-ons, like CNS, Macmillan nurses, psychiatric help etc. Also access to clinical trials. He transferred, but he'd missed out on the introductory process and has been a bit at sea because people assumed he knew about services that he'd never heard of.

@Bob74 As a fellow colon patient, I'd look for an expert in keyhole/robotic surgery. It's a plus if he's worked at a centre of excellence like St Mark's at Northwick Park. Your GP could probably come up with recommendations for hospitals with a colo-rectal specialism.

@Silkieschickens yes A&E is a different situation all together :-(

But even the day patient stays in the main treatment centre in the last month were fine, although when they put me on the 'proper' ward upstairs for half a day's recovery (as opposed to in the Day Treatment Centre) there were clearly not enough nurses to keep eyes on everything, although everyone was lovely, helpful and doing their best.

Still got everything crossed for you that it will be good news when you get you appointment!

I met the oncologist today, my radiotherapy (one solid week) should be done by early December, first prep appt expected next week, and the main series a week or so later. The first prescription of Tamoxifen will come in the post soon.

Thanks very much Thyme and Newly. Glad appointment went well Newly That is good to know its fine once in the system Newly.

I tried to phone Addenbrookes this morning, took 3 hours of trying before we could get through, but eventually got hold of a very helpful nurse. She said they are swamped with referrals at the moment and said mine was not there. I explained my doctor had said it was very likely to be cancer and a big lump and she asked other nurse who she said had different systems and she found me but no appointment yet. She said the earliest they are giving appointments out for at the moment is 23rd so roughly 3 weeks from referral and biopsies are taking 7 to 10 days. So going private would speed things up about 3 weeks and she said they have a lot of doctors who work at Addenbrookes and at Spire and Nuffield and can just transfer results over. At least presume its Spire, thought she said spa and I wondered first if it was the spar shop and then thought maybe you have the tests whilst in a spa but looking it up would guess its Spire. That was useful to know as looks like to avoid going back via GP would need consultant working at both.

She then said could add me to cancellations list, said chances are slim via it, but do get people cancel due to covid, changed mind etc. She said there is a chance evening clinics may be put on to cut waiting times but needs staff to volunteer and they have issues with staff getting covid.

I am not sure what to do but at least it gave me more information. Cancellation would be perfect but she said can be same day so I probably need to get hospital ready at all times, DH and I are both at home so that part is fine and he drives and just wfh. Probably need to stop wearing dresses and wear tops and leggings. I may research the doctors. I am not sure, I have savings but they were meant for retirement and doctors at Addenbrookes are very good though may be worth going private for first checks, think will be £1,000 to 1500 and back in.

@Silkieschickens you’re likely to need a GP referral to a private consultant as well though. Definitely look for one that is also based at Addenbrookes because my surgeon works at my local hospital and it makes life easier when he can book my surgery on the NHS whilst at a private consultation.

It looks like there is a one stop clinic www.spirehealthcare.com/spire-cambridge-lea-hospital/treatments/one-stop-breast-clinic/

Thanks very much MrsPNut that link is very useful. I should be able to get gp referral but may take a few days so need to weigh things up really.

@Silkieschickens thanks so much. I hope you find who you're looking for too! What a rollercoaster this all is.

The closer I'm getting to my appointment the more anxious I'm getting. How do you all cope with all the waiting?

Thanks Bob.

I was quite anxious and tearful today MrsHedgehog, first few days I was fine listening to music, doing some work, thinking it will all be fine. But then 3 hours of listening to NHS phone today saying we are busy, try later really set me off.

Much love to the new people who have joined.

@Doofas I'll be thinking of you on Thursday.

@Silkie I went private to start with as I couldn't get through to my NHS GP at the time and I was going nuts after no answer on the phone for three days. So I went to a private GP attached to local private hospital and it was the best thing I did, I was referred for an ultrasound and had an appointment 2 days later, got the report, went back to the private GP who recommended I went into NHS, but my GP would need to refer me in as she couldn't but she did work at local NHS hospital and knew the 2WW was still working well, all in it was around £600.
So I marched into my local GP, secretary at the desk tried telling me to leave and to call in but I was polite but insistent. Once I said 'cancer' that was the magic key and I had a call from the GP within 30 minutes, he was marvellous and referred me that afternoon with a copy of the ultrasound report.
I had a letter offering me an appointment within 2 weeks, after that it's all been very fast and I'm just about to hit half way through my treatment next week.

Last week was hell for me and I was a real low, I even went to A&E at one point with the ward instructing A&E that I was coming in and to expect me, but once I arrived I was told 'Sorry but you'll have to wait with everyone else and the wait will be upto 7 hours.' I bottled it after 20 minutes as there was no distancing going on and too many unmasked and drunks coughing.
I wasn't hanging around for that even with being double masked and giving serious stink eye to anyone that came within 2m of me.
But it's a new week and it's already much better than the last one.

I'm a week post diagnostic hemithyroidectomy now. I spoke to the surgeons secretary yesterday about something else. I asked when I was on the phone if the results where back. They weren't which I was expecting because it's a bit on the early side. But she did say when they are they would write and tell me the results, is that normal? I'm seeing the surgeon again but not for another couple of weeks. I think I would rather be told in a letter than have to wait until I see him, but I also don't want to be waiting for a letter if ones not coming.

Also my peroid has come 2 weeks early, is that normal after surgery?

Thanks Paddington Sorry to hear things are so difficult, must be really hard going through chemo. Leaving A&E was probably the wise thing to do, the covid A&E was horrendous and if you didn't have covid when you went in (which most people didn't) I think there's a good chance you would have it by the time you left, one poor woman in there with cancer, no covid and asthma and just an open ward where half the people are coughing badly. Big bed shortage so people were being thrown out quite sick still. Though good its not hitting the cancer treatment too much, I was in there thinking I hope I do not get very ill in the next 6 months or so. That's interesting about the private referral.

Husband thinks I should just wait for NHS though in June when I did getting anywhere with GP I listened to him on that and now regretting it but the ones by us look complicated and if it means going via GP both ways it may well not speed up anything by much.

Love your name Paddington I have a 14 year old autistic boy and he loves all things teddy bear related still though won't let anyone round the house incase they see his 4 foot teddy bear collection.

Just had a phone call from Addenbrookes offering me a cancellation on Friday morning, very happy and relieved to have that. They said it includes physical exam, mammogram and ultrasound as I am over 40, did not mention a biopsy but at least the first stage will be done. On the phone last time said biopsies are sometimes done same day. Said normally around 1.5 hours but allow 3. DH will take me but insists he is returning home inbetween which is not great as when I called him after covid A&E he took an hour to get there and I was just outside hospital. I dont drive but we can sort that, may get a taxi back.

I tried gps before I heard this and got a very abrupt nothing we can do, everyone on list is in same boat. In old area we could choose which hospital and see the waits. Still solved now. Even ifs its no biopsy should give a much clearer idea.

Hi @Silkieschickens

I had mammogram and ultrasound (mainly due to where the lump was) and this time didn't need a biopsy. But the breast unit where I was before did everything the same day.

Hopefully this will be the case where you are, but the letter doesn't go into all the detail, but tells you the initial treatment IYSWIM.

I'm glad that you got a cancellation too.

@Silkieschickens When I went to my appointment, I had a physical exam, a mammogram on both breasts and then an ultrasound on the lumpy one. They did a biopsy during the ultrasound and inserted a marker too but it was quite obvious that mine was cancer and I had just had a CT scan which showed the mass in my armpit as well as the breast.

Thanks both - they said on the phone before sometimes they do biopsies on the day, sometimes they call back but at least am in the system and will have at least most of the initial checks done on Friday, hopefully all of them. Very relieved. Though now of course getting slightly jittery about things but I would rather know one way or the other asap and at least that helps with that.

Hello everyone, newbie here!
I'm 29 and I live with my husband, 2 year old daughter and 10 month old son. Yesterday I went for a scan on my thyroid as I found a little lump there. The doctor told me I have a 'benign leukaemia and he would sent the report to my GP within 24/48 hours and they would contact me with the next steps'. I was so shocked I just said ok and left.
I just don't know what to do?! I know they said benign but my mind is working on overdrive thinking the absolute worst. I have 2 beautiful little babies and I can't stop crying when I look at them.
I know I can't change anything and I've just got to wait. I've had really bad health anxiety since DS was born in January. Just feeling a bit lost and unsure.

Well I am going to phone the hospital today and ask to be taken off my PARP Niraparib. I am constantly starving hungry with real hunger pains at the time. Doesnt matter if I have a big meal Im still hungry. Making life quite difficult, even chemo was easier at least I had 3 weeks feeling good each month. On a reduced dose already. Dont know if I will get an alternative, or just have to live with hoping the cancer doesnt come back too soon. Feeling quite depressed.

@1teaandchocolate Welcome, pull up a chair. Waiting is the absolute worst part no matter where you are on the journey. Hopefully the results will be sent electronically to your GP and they will contact you swiftly.

@thereisonlyoneofme That sounds rubbish, a bit like being on steroids constantly. I hope they can come up with an alternative.

@Silkieschickens glad you've got a cancellation. This time tomorrow I'll have had my appointment- I can't think about it without feeling sick. I know that stats are on my side re harmless lumps but I keep thinking about the fact that this breast has been more tender than the other for months and that maybe it was something nasty growing that's only now big enough to feel.

@1teaandchocolate well benign sounds good. A family friend had a type of leukaemia that just had to be monitored, no treatment required. I wonder if that is similar?

@thereisonlyoneofme I'm not familiar with your background, but constant hunger sounds exhausting - I hope your team can come up with a plan.