CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Anna - my MRI was done on the Monday and reported the next day, as I had a pre op and the Nurse could see it was done, although I wasn't allowed the results until the Thursday after MDT. It was not such good news though. How accurate the MRI was though, we're still waiting to find out, as it suggested the DCIS was more widespread but it's not been showing up on other imaging, I'm waiting for the full histology after mastectomy. They just kept saying, MRIs are sensitive but not specific. So I just wanted to say, if it does come back showing something it might not be secondary cancer.

Anna Officially I have been told two weeks for scan results of various kinds. However my cancer nurse always phoned me within a few days to let me know. I have opted to be given information as soon as it is a available. That does mean that sometimes I have a partial picture and it adds to the rollercoaster effect as one piece of information can be good news but the following day it is bad news.

I has my surgery yesterday. Fortunately they managed to do it keyhole. At the moment I am more bothered by my sore theist than the wound. That may change though.

My blood pressure is low and falling and my heart rate high which is causing them worry. Although I suspect that the GA causes some of that.

Tw1nset good that the surgery went alright. I hope you are comfortable have you had a GA before? After my most recent surgery they kept me in recovery for about 24 hours as I had similar issues with heart rate and blood pressure. It calmed down eventually so I suspect just the GA or stress of surgery.

Anna fingers crossed for your MRI

Good morning everyone

Hello lacies. So sorry many of you are having a rough time. Hoping it all passes swiftly.
Leslie how are you feeling now? I hope the aching in your leg/ hip has passed?
Wishing you all thebest as can be.

Morning all.
Leslie hope your hip pain is more tolerable today.
Freddie hope you get good results on Friday.
Anna the waiting for results is absolutely the worst time. Once you hear something at least you can get a plan in place.
Twinset glad the surgery went ok.
Half baked hope your appointment went well yesterday.
Waves to all and sorry if I’ve forgotten to mention everybody by name.
I am doing ok although my face has broken out in pus filled spots – is this chemo acne? My hair has also started to rapidly drop out so I think I’ll need to crop it tonight. I will no doubt look very attractive for the weekend when we go to a Michelin starred restaurant for a fancy meal
It is lovely and sunny here. Hope everyone has a good day.

Oh and some good news. The 'lump' seems to have softened a lot so hopefully the treatment is zapping it. I get twinges now and again and like to think that it is the tumour dying. Wishful thinking maybe but it keeps me cheerful.

Oh chewing that is such good news! Bring on the spots if it means xapping the lump:)

Yes my hip is fine now, thank you :) other side is a bit achy but not as bad. I did some very gentle yoga stretches yesterday which helped. I saw the nurse too. Everything is healing well and she's ordering me a special support belt. It will reduce my risk of hernia and should help with aches too!

royal how's your lymphoedema?

chewing hooray for softening lump! I hope the spots aren't sore, and sorry about your hair. I hope you'll still enjoy your meal - very posh!

Leslie my blood pressure is improving, they said much the same after affects of GA ( which I have never had before) and dehydration. My heart rate is below 100 but still higher than it normally is - but they don't seem too worried.

I have had my first walk and am now sat up in a chair. So far it is far less painful than I was expecting.

chewing I am glad the lump is softening.

Thank you for your supportive messages, especially freddie – I’m not in London, but it’s lovely of you to offer!

Great to hear you’re feeling so much better Leslie. Deutsch, hope you’re recovering well and your DCs are ok too.

Chewing, I had an awful acne breakout after my second treatment, all over my face, back and chest, I suspect it was steroid related. Onc gave me antibiotic gel which helped a bit, but what really sorts my skin out is omega 3 (fish oil). Again, trying to find out if it’s ‘allowed’ was a pain, eventually onc was ok with it, and from what I could find out it seems to be ok during most chemo apart from platinum-based treatment. I don’t take it the day before, the day of, or the day after treatment just to be on the safe side. My skin is pretty good right now. I really hope that the treatment is working well for you and the zits aren’t getting you down.

Tw1nset, hope your recovery goes smoothly. Wave to everyone else.

Chemo went ahead last Fri; weirdly my sore throat and sniffles disappeared afterwards, so maybe paclitaxel is a cure for the common cold! I’d imagine most people would prefer to stick to lemsip…

I had a phone consultation with the COC – the clinic who offer advice and treatment with ‘repurposed’ medicines for cancer, metformin, statins, etc. It was very interesting and I’m going ahead. My thinking is that if there’s a chance this stuff can prevent a recurrence, it’s not going to cause horrid side effects or interfere with my existing treatment, and it’s not prohibitively expensive, then it’s worth a go.

I’ve got quite a lot of redness in the reconstruction site, BCN doesn’t think it’s cellulitis, so fingers crossed it settles down. My bloods are fine, and I don’t have any other symptoms. Bit worried about it though, I could really do without it! And I don’t want anything to delay the last two chemos!

Flippy I'm glad your cold cleared up. Very good news about the COC. It definitely seems worth a try. I hope the redness calms down soon

Tw1nset how are you? I hope you are recovering well. Are you still in hospital?

My chemo has been delayed until next week because I saw a different oncologist who is imposing a strict 4 weeks after surgery rule. All very well, but my normal oncologist was planning to do chemo last week if I hadn't been sick the night before never mind. At least I have another week to recover from the op!

It was a year ago today that I got the scan results showing my cancer was back. I am not sure if this is now my cancerversary or what weirdly it's exactly six months from my other cancerversary so perhaps I shall celebrate both

Thank you lovely Lacies for being there for me through this year

PS Flippy when you looked at that charity, did you enquire about the care packs for people who are too far away to go to the groups? Someone posted about them in a group I am in, but I am not sure if it's just for England or all of UK

Leslie I am still in hospital. I came out of theatre Monday evening at about 6:30pm. I managed to get out of bed yesterday and sit in a chair. I also managed to walk to the loo. Today I showered myself and dressed myself. I have also needed only one dose of liquid morphine today and coped just with paracetamol. They are possibly going to let me home tomorrow. They are worried about me going home to a baby and if I will be doing too much.

Mentally I am finding being in hospital tough as I am having for the first time to really admit that I have been very ill. I am hobbling about like an ill person and am now totally reliant on my husband. I am fiercely independent and this is hard - as I am sure it is for all of us.

I have been in total denial about the cancer and even now I don't feel like a real cancer patient as hopefully now the tumour has gone completely and there is no cancer left. I swing from feeling like a fraud because everybody else on the ward seems much more ill than me to then feeling totally freaked out by her fact that I am here . I am on a ward with people with cancer and so I must be one of them. I hope that doesn't come across as rude or dismissive.

Thankyou flippy for your kind thoughts.

Tw1nset I hope they'll let you out soon. Hospital isn't very relaxing!

I know what you mean. I felt the same way after my first surgery. I felt like I was lying to say "I have cancer" but it seemed weird to say "I had cancer" when I was going to have be having chemo.

Even now it's back I still forget sometimes. Especially since I've had the surgery and feel so much better.

Lovely lacies...quick one just to say it's been rammed home to me quite how much we sadly need to stay on top of what's happening to us. I've been ringing BCNs on a virtually daily basis to ask on progress on Oncotype result...even asking them to double check it had been sent. I was assured it had been etc etc and started to feel like a nuisance. Then today I decided to ring the company that actually does the test.. to discover that no it hadn't arrived but they could see thru FedEx tracking that it was due today. There were TWO cock ups.. not sending it and clearly not checking properly when I asked them to. As you can imagine I'm incredibly upset as delay in treatment is bad for both mental and physical reasons and this has caused a three week delay. And I dread to think how much longer it would have been and whether they would ever have admitted it to me if I hadn't been "on it" and checked. Anyway...lesson learnt and I will be hyper vigilant and not be made to feel like a nuisance again. Just saying if it doesn't feel right to you...please do the same!!!
Hugs to all and sorry not to ask how all of you are...this has, as they say "done my head in" ...not sure why quite so much...xxx

Freddie that is shocking

freddie sounds like you need a or maybe after that! I expect there are several steps involved in the samples being sent out, so they probably just checked their step was done, but didn't think to check that the other steps had been done these processes always seem to be ridiculously complicated! I hope they get the results back quickly. Hopefully the company might bump you up the queue given the delay.

The uncertainty is horrible, especially as it's delaying your treatment plan

THANK you.. .And sorry for the rant. Aaargh!!
Any way hugs with my boys have cheered me up and made me ever more determined to stay as well as possible...cake and wine later!!
Really do hope everyone else is ok..
Twinset...i completely get what you mean about suddenly being plunged into a "real csncer" situation...tgeres suddenly no denying that it's all happening.. .hope you manage to escape soon
Flippy I am.with you on the COC...friend of mine takes metformin and says it's virtually impossible to put on weight.. .So um.if nothing else that's a bonus!!
Chewing...hoorsy for lump softening and long may it continue
And
Leslie...i know how you must feel about chemo delay...but love the way you can always find a positive.. .
Hugs to all and apologies again for the rant...xxxxxxxx

Morning all
Flippy thanks for the Omega 3 tip. Zits have now died down a bit so I am hoping they will not get any worse.
Leslie and Twin
Freddie how frustrating , Hope they get the results back to you soon. I agree that you shouldn't feel like a nuisance if you have to check and chase things. I probably have a reputation as a right pita with my team but don't care any more. They have been a lot more communicative and informative since I had a rant but you shouldn't have to get upset to receive fair treatment.
Anyway that's my rant of the day over with. Hope you all have a good day

Freddie I'm sorry you've had this issue and well done for taking matters into your own hands. The NHS can be brilliant but sometimes things don't work as they should. I've had a similar issue this week. I've been waiting six weeks for the results of a blood test to see if I'm post menopausal and can switch drugs. After a lot of phone calls it turns out I am but the surgeon hadn't written to anybody to request the change, just written a note on my file to change if appropriate. I was told to get gp to access my hospital records to see test results and note and prescribe. Gp surgery refused to do this, resulting in me having to see a dr, explain the whole situation and finally being allowed to have anastrazole. All all the while being treated pretty rudely for being a bit stressed about it. Not my fault the system didn't work but had I not queried it I don't believe anyone would have ever known to look. Sometimes you just have to shout, even if it makes you unpopular.

Anyway, Leslie I'm pleased to hear you're feeling better. Hello to everyone else.

I'm now on the lookout for anastrazole side effects.

One for all of you, carry on being, or become, a PITA! In the nicest possible way of course! I learned that lesson when DP was going through treatment - biopsy sample lost, notes lost, appointments not made - the list went on. On the whole, I think that there's not enough staff or resources available, which is why mistakes are made or things are missed. Don't take anything for granted.

Bah that you're missing chemo Leslie, but hopefully you'll feel better and recover more quickly for it. It feels weird to wish you a happy cancerversary, but if you're celebrating, then good for you, and all good wishes! When I looked at the care package thing from the charity it brought up a form to be completed by a referrer, I kind of gave up at that point.

Freddie, I'm way above my fighting weight and I admit to thinking/hoping that I might finally get one side effect that will make me happy - I wouldn't mind effortlessly losing a few pounds. All of the meds that COC prescribed arrived yesterday - pretty good service.

Tw1nset, I still don't feel like I have cancer - it just seems too unbelievable to be true. Have you made it home yet? Hope you're feeling ok, wherever you are.

Good luck with the anastrazole MrsRhod - that's what I'm in for as well. That's rubbish that your GP couldn't/wouldn't access the results.

My Frankenboob is still quite red, and of course I'm now convinced that it's all going wrong. It's not constantly sore, but I'm having fairly regular sharp pains - hoping it's the healing process/nerves and nothing else, especially as I'm also having the same kind of shooting pain in my good reduced breast, which has no redness. 2nd last chemo tomorrow, so don't want it to be delayed!! Especially as I have booked a little treat weekend away for me and DS and my bestie before I start chemo. I've probably jinxed myself by doing that!

freddie I hope you enjoyed your cake and wine! And I'm glad your boys cheered you up :)

chewing I'm glad things have improved but as you say you shouldn't need to go to those lengths to get decent treatment

mrsrhod grrrr. I hope the anastrazole doesn't cause you any problems after all the trouble you had to go to to get it!

I often wonder how long it would've taken someone to notice about my recurrence if I hadn't chased up I hadn't heard anything for several weeks, then my results appointment was cancelled and no replacement given so I assumed all was well. My nurse didn't see my results until I emailed and she checked them. Whereas I had imagined maybe scans showing cancer would be flagged up in some way

Anyway, I hope everybody is having a relaxing evening

Bloody hell Leslie!! I didn't realise that had happened to you, that's horrifying. I'm really sorry that you had to go through that.