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waiting result , fed up with this waiting

33 REPLIES 33
powerjen
Member

Re: waiting result , fed up with this waiting

Hi Florida chick,
the wait i had was terrible, i have appt next week, seemingly mri did not show recurrence but still do not know what lump is. the breast mri showed a cyst on my liver and gallstones, waiting on ultrasound now,
i hope you hear soon x

Guest user
Not applicable

Re: waiting result , fed up with this waiting

Im a nurse too! I was fast tracked and seen within 2 weeks, then returned within a week for guided core biopsy. I have then had to wait for 2 weeks for appointment for results as the consultant is on holiday! Are his team not good enough to make decisions I wonder?. Its driving me crazy not knowing one way or another, and I feel that if its good news, its not right that I havent been told to stop the worry, and if its bad news, well I always thought time was of the essence!

Reading through the threads, it seems that there is too much delay for results etc. This concerns me.
powerjen
Member

Re: waiting result , fed up with this waiting

Glad your surgery is over, I had lumpectomy, snb, chemo, rads, herceptin and tamoxifen, it's funny being the patient for a change, have a good weekend x

Lols
Member

Re: waiting result , fed up with this waiting

Two wles, full ANC 5 weeks post op, grade 3 4/25 lymph, onc appt 2 nd August, chemo, rads, tamoxifen!!!! Roll on 2014. Off work at mo and not allowed in on chemo some days I miss it though !
powerjen
Member

Re: waiting result , fed up with this waiting

Maybe stress is a factor, my sister also had it at 38, I wAs 40 when diagnosed, what is your situation now?

Lols
Member

Re: waiting result , fed up with this waiting

Reading posts there's a lot of nurses and teachers dx b ca makes you wonder? Stress a contributing factor?
anyway fingers crossed for you, wouldn't be fair would it, you've already been there once.. Crap, crap disease .
powerjen
Member

Re: waiting result , fed up with this waiting

I am duel trained, I used to work in medical now I am a community psychiatric nurse , I changed after my cancer diagnosis5 years ago, I never take work home now and I try to be out the door at 5 , I think work was put into perspective and I worry less now, one positive of having this crap illnessX

Lols
Member

Re: waiting result , fed up with this waiting

Yeah medicine and cardiology makes it worse I think being in the business, know too much but not enough and seen far too much.!!
no perks though working for NHS soon found that out, even though I always work over my hours and swap and change shifts, doesn't work both ways. When I go back I'm going to get far less involved dont want the stress anymore.
hope it wont be to long before you hear xx
powerjen
Member

Re: waiting result , fed up with this waiting

Hi Lols,
I had the MRI 3 weeks ago, it has been 12 weeks since I first went to the clinic, I know things are bad in the nhs, as I am a nurse also but when it's your own health it's hard. I never thought I would ever say this but I wish I had private healthcare, could not get covered now anyway! After having bc
Are you a general nurse?

cazza36
Member

Re: waiting result , fed up with this waiting

Hi Powerjen
13 weeks???? how many times are they checking the results??? I have a little lump on my neck and my onc says its too small to stick a needle in. so i'm to have a ct scan instead. ive been off my head worrying and ive only had to wait a week and a half so far. I should have scan in a week and a half (but no appointment through yet so no idea) then another week for results. i can only imagine how scary it must be for you. Im hoping this is a time when no news means good news.
keep on letting us know how u are getting on xxx
Lols
Member

Re: waiting result , fed up with this waiting

Hi powerJen know the waiting feeling theirs nothing worse. From ward experience any patient I have ever nursed has not waited 12 weeks for MRI results. I had MRI in January not related to bc resulted results feb. Any use making a bit of fuss ? I know we don't like doing this but believe me hospitals don't like complaints even verbal and it might make them pull their socks up.
on other hand if it needs double checking and has been checked in first instance which I assume it must have (!or imagine the backlog) then perhaps there's nothing abnormal detected so nonsense of urgency to them , obviously to you, but we seemto have to do a lot of waiting which the stress of doesn't seem to be taken into account .
i hope it's all ok for you and now you've got another damn weekend waiting, fingers crossed for you x
powerjen
Member

Re: waiting result , fed up with this waiting

Bump , sorry folks having a bad day

powerjen
Member

Re: waiting result , fed up with this waiting

Update re my situation, finally spoke to bcn today after I left message on their voicemail, it's now been 12 weeks since I first went with the lump near my scar, the MRI result is still not available, she said they need to be double checked before the result is given, she said it takes hours to look at them. I might get a result next week! I told her about the palpable lymph node that I had checked before but now think is bigger, she said I will need to be seen but the clinic is probably too busy next week., yet more waiting
maybe I am imagining the node is bigger I just don't know I am not sure what is normal, the bcn also said it was good the mammo never showed anything but I know they don't always show cancerous lumps, she said something about scar tissue and fatty tissue on the ultrasound, I asked why I did not get a biopsy and she said there was nothing maybe to biopsy! I definitely seen something on the ultrasound, it's all too confusing,
love to you all x

Lols
Member

Re: waiting result , fed up with this waiting

Thankyou , so stressed now u wouldn't believe it. Hope your scan for dvt neg . Dont want to go to appt tomorrow, thinking about cancelling it, but OH will insist. X
poemsgalore
Member

Re: waiting result , fed up with this waiting

Lols

They wouldn't necessarily tell you about vascular invasion. I didn't find out about mine until three quarters of the way through chemo.
As for pains in legs, that could be stress. I've just recovered from a bout of cellulitis and my onco has insisted I have a scan for DVT!!!
Good luck for Monday, sending hugs and best wishes.
Poemsgalore xx
Morwenna
Member

Re: waiting result , fed up with this waiting

Maggie, same here.

I was asked if I wanted to donate towards prostate cancer at Safeways yesterday. I wanted to say, I think I've given enough to cancer actually, but what I actually managed was, not today Thankyou. Lame brain!! 😉
maggiemay22
Member

Re: waiting result , fed up with this waiting

Hi powerjen. 10 weeks is a ridiculous amount of time to be waiting. I haven't needed an MRI scan so I don't know if this length of time is normal or not but it's definitely unacceptable.

Lols - I know what you mean about cancer seeming to be everywhere. I don't watch much TV but when I do it seems as if every other ad is for Macmillans. Even when I went to the supeermarket, there was someone collecting. He didn't know what to say when I said sorry too close to home and rushed off with tears in my eyes. I've been feeling quite down these last few days. xx
powerjen
Member

Re: waiting result , fed up with this waiting

Hello ladies,
lols I think it is hard not to read into things, when I have had scans I found myself looking at the radiographer s face to see if they were looking sad! Crazy ! I done the same when I went for my MRI 2 weeks ago. I have a friend who had bc 12 years ago and she had positive lymph nodes., she is still doing fine.
Xx

Lols
Member

Re: waiting result , fed up with this waiting

Hi Annie, I know it's just I've let it get to me today, having bit of panic attack to be honest, not like me at all. Can't get grade 3 and 4/25 lymph out of my mind. No idea if vascular invasion no one mentioned it. I know e pos and pr pos her neg, . Consultant said before op on Monday that in mdt no one else was going to order ct scan he did as 4 lymph. Won't do bone scan says not necessary and not upto him to order. Got lower leg pain at mo so imaging all sorts, read the forum of the ladies that had primary and secondary diagnosis at same time, they are all so nice and supportive to each other and very knowledgeable, some felt well and had no idea.
I should get results Monday when I'm going for wound check the girls in scanning are pulling some strings!!! Don't know if il be able to walk into room was thinking of cancelling , bloody nightmare.
hope your ok, you sound good, good luck with onc appt, I haven't heard a thing, another thing surgeon sounded surprised about x
hope you get a good sleep, I'm taking sleeping tablet tonight xx
Annie62
Member

Re: waiting result , fed up with this waiting

Lois, as you know I was absolutely convinced it would be bad news after my CT and bone scans, but it wasn't - in fact my Consultant added those results during my last appointment as a sort of afterthought! Luckily my BCC nurse had already told me they were clear.

I know we're all different, but I had an 8cm tumour, 5/11 nodes affected (although no vascular invasion) and was anticipating the worst. I hadn't even thought about it spreading until they said I'd have to have the scans!

I am finding it a bit easier to occasionally 'forget' about the fact that I have/had cancer. I know I've got chemo to get through, but being on here helps, as does my lovely family (I think OH would like to 'forget' as well!). I've had a couple of glasses of wine tonight too - if it helps, what's the harm? (Don't answer that, anyone!!!)

Annie x
Lols
Member

Re: waiting result , fed up with this waiting

Hi, had nearly bottle of wine what a crap day, knew I'd worry but didnt think it would get the better of me but it has. I think we do get extra sensitive and more aware of cancer .. My sons are older but in one way better because they are independent but in another way much worse for them as they worry so much more.
bloody crap disease it interferes with every minute of your day, I'm missing work too and the company of colleagues, your whole life changes . Roll on next year, this anxiety is awful.
thanks for reply and hope all your plans are arranged and you can move on soon. X
Guest user
Not applicable

Re: waiting result , fed up with this waiting

Hi Lols
Don't worry about the girl who said "even if it is...". I am sure she said that as a comfort and not as a diagnosis. She doesn't know as she is not trained to interpret the scans, only to take them.I have had a couple of similar comments along that line. "Nowadays they do immediate reconstruction. So, even if it is cancer you'll be just the same as now." Or... "At least your son is

older now and it won't affect him so much if it turns out to be cancer." They try to comfort, but it turns out I am more sensitive than I thought! Also, I was thinking just yesterday that cancer has been 'so remote' most of my life and all of a sudden there are friends and family being diagnosed with cancer left right and centre. Perhaps we are just more tuned in to the news? Anyway, thinking of you. Have a glass of wine and chill! X


Lols
Member

Re: waiting result , fed up with this waiting

Ps, whilst in cafe at beach today saw a girl no hair on chemo and I've got to say she looked amazing, hat off and she rocked it, my OH thought she looked stunning!!!! So that's a positive for the chemo road x
Lols
Member

Re: waiting result , fed up with this waiting

Thanks z, feel so sorry for my mum too, can't imagine how I'd feel if this was happening to my boys. Nightmare, staff were lovely in scanning, 3 girls that worked there all other side of bc, but on leaving i was bit tearful and one said don't worry even if worst they treat it now, what the hell does that mean? Was she trying to reassure me ? I know I'm extra sensitive at mo and cancer seems to be everywhere , tv, papers, adverts but another crap weekend, and I know I should be living not waiting. Sorry rant over thanks for reply Hun. How are you? Hot enough? X
Zuleika
Member

Re: waiting result , fed up with this waiting

Lols it's very hard to distract yourself when your brain is in overdrive. It's human nature to think what if, so rather than thinking that, maybe think about a few nice things to do firstly this weekend, then in a few weeks, then next year, when all this is over. If you can, set yourself some distraction tasks, making lists, clearing out drawers ( you may not be up to that since the last op), look on the Internet for nices places to visit, etc. you could try calling the helpline on here, getting it off your chest may help. The thing is, you are dealing with uncertainty. I was like this last week and felt so miserableso I understand where you are coming from.
Im thinking of you x
Janet_BCC
Member

Re: waiting result , fed up with this waiting

Hi Lols

As Lucy mentioned earlier in this thread, our helpliners are available to talk things over. They can offer emotional support and practical information. Opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

Lols
Member

Re: waiting result , fed up with this waiting

Hi ladies, I need some coping statergies had body ct this morn, then went for lunch with OH by beach in sun now home alone having major panic thinking what if!!!! I hate that this disease does this to us,i know its mind over matter but its not happening at the moment, help x
powerjen
Member

Re: waiting result , fed up with this waiting

Good luck for today, xx

Guest user
Not applicable

Re: waiting result , fed up with this waiting

Hi Powerjen
I reach out over cyberspace and give you a virtual hug. I so understand how awful the wait is. It is as if one's thoughts have gone teenager on us: those nice and well-behaved thought patterns are suddenly disobedient and go where I forbid them to go, they are up one minute and down the next. And my body is a complete alien entity. It has stress/nervous reactions that upset everything. I only had to wait 8 days. How do you survive 2 (10?!) weeks? Hope you found coping strategies that work for you. Poemsgalore gave me some really good advice: deep breathing and repeating an encouraging message like a mantra to yourself.
When will you hear? What date?
I have not yet read your previous post but I assume you had a MRI but no biopsy? I am in the same boat. Not that I want a biopsy but I do wonder how they can diagnose accurately without one... i guess I'll find out today. My appt is at 3.
ThinLizzie x
powerjen
Member

Re: waiting result , fed up with this waiting

Hi Lols,
Thanks for replying, yes the bcn has my contact numbers, it will be 2 weeks tomorrow since I had the MRI so I hope to hear soon, I would just like a biopsy to be done, I hope that is offered
X

Lols
Member

Re: waiting result , fed up with this waiting

Hi power Jen, I know the waiting is the worst thing ever. 10 weeks sounds very unacceptable, do you gave bcn nurse contact number or any team contact I'd phone and phone and not give up until they have answers . On a positive note though could no news be good news I hope so for you , x
powerjen
Member

Re: waiting result , fed up with this waiting

Thanks Lucy
This waiting is awful
Regards
Nancy

Lucy_BCC
Member

Re: waiting result , fed up with this waiting

Hi Powerjen

Please don't forget our helpliners are on hand if you feel it would help to call and talk through your concerns, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Take care

Lucy

powerjen
Member

waiting result , fed up with this waiting

Hi folks,
As previously posted i am waiting on the results of mri scan to see if it is scar tissue or recurrence. i am at the end of my tether i first went about 10 weeks ago and i still do not know what i am dealing with.i know the nhs is in a bad way but this wait is unacceptable i feel.i also have a palpable lymph node which i had an ultrasound done on a while back, i forgot to mention this at my appointment as i feel it is bigger (either that or my imagination)
sometimes i feel i wish it was back so i can get the boob off completely, is that crazy? since the diagnosis i have had so many scares, because i was her 2 + i worry about the herceptin eventually not working,
sorry for the rant x