Hi posted in a couple of places, but think I need to just start a new one. would really love to talk to someone in Southport / northwest who’s waiting to find out what they have. very scared and worried, but tired of waiting! Anybody out there feeling the same?
Hi spacechick
yep i live in ormskirk - i’m waiting on results of mri - i have an appt tomorrow - to cut a long story short - i referred to breast clinic in nov 2011 - had a benign fibranoma removed in jan 2012 however when it was examined in pathology lab they found some dcis attached to it which may have been hidden bu the firanoma or just not shown up at all - the radiologist says she has gone over my mammogram and ultrasound with a fine tooth comb but cant see any evidence of dcis - hence the mri - the consultant says that if nothing shows up on mri he will have to do next surgery ‘blind’ and if doesnt get a clear margin will need a 3rd op so hoping that mri does show something but only dcis - its scary stuff this waiting isnt it? - having been in limbo since november my nerves are pretty shot to peices now - im on sleeping medication and antianxiety medication but cant afford to take any time off work becuase i’ll need my sick pay for whateva treatment i may need - but am probably better at work cos less time to think dark thoughts.
Are you waiting for biopsy results? or have you already had surgery?
Hi worried, how horrendous for you, I’m not surprised you’re in limbo. I’m at the very beginning, I had my clinic appt 21/2 weeks ago and go for Ultrasound on Tuesday in Ormskirk. Found out nothing in initial clinic, to be honest felt like they just wanted to go home( 5.30 appointment- can’t blame them really.) But 21/2 wks on I’m frazzled and have ad too much time to think- or at least I thought that until I read your story. I just want to know now, but chances are by Tues I still won’t know if they want to take anything from the lump right? I’ll keep everything crossed for you that you finally get some positive news. Waiting is a nightmare. Look after yourself and let me know how you get on tomorrow.
my first appointment at ormskirk breast clinic was at 7.45pm - when i came out the caretaker was waiting to lock up thpatients dept! its not exactly a rapid dignosis clinic is it!! i waited 2 days for a mammo then 2 more days for a FNA and ultrasound then 9 days for the results. - thats when they 1st diagnosed the fibranoma (which they took out in jan with the cancer cells) - am starting to wobble a bit now about my appt tomorrow - but i need to move forward now so any news will be better than more waiting…i think?
Everything crossed. Thinking of you tomorrow. X
hiya spacechick
had breast clinic this am - only running 45 mins behind today so that was a bonus - the mri results are inconclusiv - the dcis didnt show up which is the case in a small percentage the doc said.
So the plan is more surgery this wednesday (he offered for me to be put on this afternoons theatre list! but i needed time to get my head round it)he says he wants to get a clear margin so he will go in thru the scar from my january op then go right round the scar tissue taking tissue as he goes - he said he has no way of knowing which way the fibranoma was in my breast so the edge where the ducatal carcinoma was found could be from top? bottom? side?
so he will err on side of caution and take more rather than less - have got to stay in for a couple of days cos of having drains but thats no big deal - then results in 2 weeks to say whether its all out then if not may be looking at another op - but like the surgeon says, one step at a time - he cant rule out any invasive cancer he said but at moment looking like dcis alone
so after that had a pre op assessment, chest xray, bloods and an ultrasound - have come home and got back in bed - am exhausted!!! feel a bit calmer knowing something is happening anyway.
take care, will be thinking of you tomorrow - thought of you today when i was in xray dept cos thats were you probably will av your scan tomorrow - everyone there has always been really kind so try not to stress too much but its easier said than done i know
Cath
Hi spacechick
hope things went ok today, was thinking of u.
Cath
Hello ladies
I’m a Liverpool lady, althugh I have advanced bc and so am in a very different place to you. Just wanted to remind u tho, that if you are not 100% happy with your care in ormskirk, you can very easily transfer to aintree/ the royal Liverpool. I know several others who have done this (not just from ormskirk).The team at aintree are great, 1st class surgeons, nurses who go above + beyond, etc. I can’t believe how your initial testing was dragged out- I was diagnosed within 4hrs of arriving at the breast clinc + had my surgery just 10days later…!!
Feel free to contact me if you want any info, I can’t name people + recommend anyone on the forums but would happliy share that info if you wish by pm. Demand the best treatment (coz ur worth it lol)
good luck x
Hi spacechick
I’m not waiting for any results at the moment because I had my surgery in January but I do live in Southport so thought you may want to contact me at some stage if you need anyone to talk to or email. I agree that the waiting is horrendous and I really feel for you.
I had a large area of DCIS which was detected at my routine mammogram at the end of November. I got a recall letter about a week later at which stage I was already in panic! I was sent to the Linda McCartney Centre at the Royal Liverpool early December where I had another mammogram and core biopsy. The following week I was back for results and the surgery was booked for Jan 4th. I had excellent care and a lovely lady surgeon so I agree with Gingerbud, if you’re not satisfied with Ormskirk, ask to be transferred. I was never offered Ormskirk, only Aintree or Royal Liverpool. I didn’t even know there was a breast clinic at Ormskirk to be honest.
Anyway, I hope all went well with you today (oops! it’s after midnight, so yesterday) and please don’t hesitate to contact me if you feel the need.
Ann
Hi Annie
i had my 2nd op on wednesday at Ormskirk -still feel really crappy must be deeper anestetic or more morphine but am still woozy and bp in my boots- i cant fauklt the surgeon, anethitists, ward staff etc and felt even more insafe hands with them this time roumd. it just the waiting for scans. follow up and clinics running later but cant be helped cos very short staffed.
Where you given a BCN by name , i know there are 3 in ormskirk and Southport but i wouldnt know any of them by name.
i too had dcis removed this dony know how mnh tho cos it didnt show uop on last weeks mri, all i knoe is than when they took the dcis out attahced to the fibranoma in jan it was 4mm. I am hoping for clear margin this time and no other areas found cos the thought of a 3rd op…
my results are on 12th march . have you been offered rads annie and if so at the clatterbridge site at Aintree? or over the water?
reaults on monday 12th
enjoy your weekend whilst the sun shines…
Cath x
Hi worried23,
Sorry you’re feeling a bit crappy but it’s really not long after your surgery so I’m sure you’ll be better soon. I hope everything goes O.K. for you and you don’t have to face another op. That’s the main reason that I opted for full mx, I’m a real wimp when it comes to procedures and just couldn’t face the idea of any more than necessary.
Sorry I can’t help with BCN as the one I was allocated comes from Cheshire and actually I’ve never seen her since before my op. She did ring me 2 or 3 times to check if I was O.K. After you saying that you had good treatment at Ormskirk, I almost wish that I had been sent there as it’s such a fag getting to Liverpool and back.
The staff at Royal Liverpool were great and the surgeon is lovely but if I’m honest, I’m not thrilled with my recon. I’ve had a Becker implant which is a permanent expander that has to be filled by degrees. It’s still very uncomfortable and there’s a hard lump at the bottom on the right side which I’m sure shouldn’t be there. Also, when I went to the hospital on Thursday, they tried to fill it for the first time and it didn’t work. The surgeon thinks the port may have flipped over so I now have to go back in as a day case to have it corrected. Not a happy bunny!
I’m not having rads or chemo because everything was removed and no trace of anything else was found. I’m so thankful for that.
I hope your results are what you hope for on the 12th, good luck.
Ann
Hi Ann
having a bit of a wobble about monday results - the reason ive not pushed for mx up to now is that dcis is pre invasive so unless they find any other cancer there then nothing can have spread anywhere else - although i think the liklihood of a recurrence is the same as an invasive cancer but i dont really know - but if theres no clear margin this time then i dnk that ont think i can have another op (no. 3) and think that there will always be the possibility of surgery no.4 - i just dunno.
But …don’t want to think too much about what to do cos it might be good news and clear margin!
i got my sister in law over from Oz at moment for 3 weeks so not stressing nearly so much cos never really on my own (its when i’m on my own that my imagination works overtime!).
how often will you have to go back for a follow up? and will that be at the linda mcartney centre? when you going back to have day surgery? sorry all these questions!
Anyway have a nice day, the sun is shining here even if its frezing cold
Cath x
Hi Cath,
I understand your wobbles, I’d be exactly the same. The only thing I can say is that the worrying is nearly always worse than the actual experience. I was a nervous wreck waiting but just breezed through the hospital stay even although it wasn’t enjoyable. I have to admit, I’ve hated this whole experience but I’m really thankful that it hasn’t been worse in terms of diagnosis. So many people go through long and painful treatments so I feel I can’t complain too much.
Apparently, I’ll have to go back to the Linda McCartney Centre for mammograms every year for the next 5 years rather than just going up the road to the mobile scanner. I’ve had numerous visits there since the op for check-ups and I go back in for my day surgery on April 4th. I’ve opted to have it done under local anaesthetic so that I can get home quickly but I’m not sure how I’ll cope with that!
I wonder whatever happened to spacechick who started this thread. She’s certainly never contacted me. Strange. Let’s hope that all her worrying turned out to be unfounded and she’s fine.
I really hope you get the results you want on Monday. Post back here and let me know how you get on.
Cheers
Ann
Hi Cath,
How was it today. I hope everything was as you hoped. Do let me know.
Ann x
Hi Ann
today was good - 2nd surgery removed a 5mm dcis tumour with clear margins - so no more surgery wahey! - no invasive cancer found so oth areas have been dcis which is good. the consultant reckons that the benign fibronoma was hiding the areas of dcis so didnt show on mamm or US but then if i hadnt had the fibranoma the dcis would never have been found so am grateful for that cos it may well have turned invasive by the time i was old enuf to have routine mammograms - the dressing on wound were removed and scar looks ok, longer than from last op and redder but hey i’m not complaining.
it’s still painful inside breast area when i lie on it or do too much so signed off for another 2 weeks and see how I am - have got my first follow up appot at ormskirk breast clinic in 3 months nd have following the mdt last week which discussed my results the oncologist wants to see me at southport to discuss options for further treatment (radiotherapy) so will be seen in next 2 weeks i was told. meant to ask about chances of recurrence etc at appt today but forgot but will ask cancer specialist cos thats the reason for rads i think to reduce chances of a recurrence.
So have definately had worse days than today…feel like i’ve done the first hurdle and onto the next.
are you back at work? or still off?
I was supposed to be flying out to australia tomorrow from manchester airport to visit family but obviously had to cancel due to 2 lots of surgery so will be a bit pee’d off tomorrow but will book later in year.
Hope youve had a good day and keep in touch on this thread
Cath x
Hi Cath,
So glad for you that everything turned out O.K.
I retired in 2008 so I had no need to worry about work, thank goodness. The trouble is, I think the older you get, the longer it takes to heal. I’m still uncomfortable but it’s getting better all the time and I’m almost 10 weeks on now. I’m not sure how I’ll be when they srtart filling this ruddy implant but it couldn’t be any worse than I was 5 or 6 weeks ago! I’m sure you’ll be feeling great very soon.
That’s a bummer not being able to go to Oz but think positive, you’ll now be healthy enough to go on many other occasions.
All the best for your follow-up appointments. Stay well.
Ann x