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trying to keep sane whilst waiting, waiting, waiting........

39 REPLIES 39
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Re: trying to keep sane whilst waiting, waiting, waiting........

HI Kathleen and Lizzy,

I am not so freaked out as hissed off with my consultant, I have told my GP I want a different consultant, which may mean another town, but we don't care, important to get this sorted out.

When I had my first ultrasound, they only scanned the area where she originally marked the spot (at the second appointment, she clearly had not read my notes, as she told me she could not feel any lump!!!????!!!)

Because I am persistent, know my body, I know that my left breast is not right, I can see the second lump, feel like I am carrying a golf ball under my arm, and I want to find a reason for the pain. The excisional is healing nicely, but now am of the mind that the surgery I had last week was uneccessary! My breast feels exactly the same as it did when I went to my GP with the initial problem, if not worse!

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Re: trying to keep sane whilst waiting, waiting, waiting........

Sommer, that is appalling. It's bad enough going through all this without having to take responsibility for chasing up your own investigations as well. Hope they get you sorted very quickly.
Hugs,
Kathleen

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi sommer

dont know what to say for once im speechless an the mind is boggled

liz

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Re: trying to keep sane whilst waiting, waiting, waiting........

Is it any wonder that I have never felt relieved?

Just called BCN, who has stated that on my notes, there was clearly a second lump!

Which seems to have been completely ignored!

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Lizzy,

No idea, I do wonder what goes on up there in the Secret Service... According to my BCN, my hospital will not remove things until they know what it is!

Last night, I was in bed and for the first time, I was gently trying to ease the itching of my incision, when I felt (am beginning to think I am paranoid now) an oblong shaped mass in a completely different area to the incision running towards my nipple! Now, when the consultant agreed to excise what she called a fibroadenoma, she said there was another lump, which was the reason why she was placing a wire in to remove the right lump! This second lump is painless, and I asked my husband to feel it, he agreed I was not imagining it, I could tell when he was feeling it, with his face. The radiology consultant, disagreed with the surgeon and only skin marked me, where the mass was and that was when he told me that I had a grape like mass under my arm!

Aaaarrrggh, have called my GP this morning, to call me back.

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi cath

thats good news that they got the clear margins and dont have to go back in to do more surgery
at leat doing rads they are giving you a good chance to stop it recurring well pleased for you

sommer why didnt they remove the mass under the arm same time as the fibro / or at least have a look if they new it was there dont understand why you have to start all over !!!

I had my 3mth check today every thing went well except i have the start of lymphdemia ,i did notice my watch was leaving slight marks so am being reffered to the clinic to measure me up and show me how to massage correctly and what creams to use etc etc
dont have to go back to surgeon for 6 months I feel free again

I got my swimming form today so will go try my new swimsuits on see what they look like ahead of my holidays dont know how i feel about wearing a full swim suit but never mind small price to pay for your life I suppose

anyway good luck anyone waiting for results or tests hope all goes well for you all
liz

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Cath

Well, I am not sure if congratulations are what you need right now, but you know what you're dealing with!

Good that they achieved clear margins...

Yes, I am waiting on an appointment, again, I am spinning with my breast clinic, one calls me at 7.55pm, then the next day they call me again and say that they need to cancel that appointment and they will write to me for a new one!

I can't believe how much pain I am in, under my arm, it is awful... I feel like I am carrying a golf ball under there, yet I cannot feel anything! Where the lump was removed is not so bad, dressing was changed today, and no sign of infection or any redness, just itching, which is normal. But the chronic pain? I just hope it settles down and once the histology is in, from the lump removed, I now have to go all over again another round with the clinic!

I hope you feel somewhat relieved after your news, no more cancer is good, and hopefully rads will kill the little feckers if they think of returning and multiplying again!

Thanks for dropping in, stay in touch, I hope you do!

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi sommer and lizzy
hope you both ok as i know you both waiting on appts.
just thought i'd let you know how i got on in clinic today...
today was a good day - results from 2nd op found a 5mm tumour of dcis and they acheived clear margins - so no more cnacer and no more surgery - the releof is massive cos i had convinced myself they would find invasive cancer.
so now have a follow up appt booked for 3 months time at breast cinic and am waiting on oncologist appt in next 2 weeks to dicuss radiotherpay which will limit chances of a recurrence.
hope you both get the news you want at appts and i will keep coming back to this thread to see how you both doing
take care
cath x

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Re: trying to keep sane whilst waiting, waiting, waiting........

HI Lizzy,

Oh good luck for Tuesday... Let me know how it all goes...

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi sommer
just finished work and having a cuppa and hot x bun before retiring was starving
yours is dragging on !makes it all the harder

Im alive and kicking got my 3 month check up tues new consultant over here now suppossed to be brilliant and very nice i hope so , makes things so much easier if you feel at ease with your surgeon
she going to go throuh reconstruction options with me so will be interesting
take care liz

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi ladies,

I am doing okay thanks, a tad tender, but general is out of my system now!

I have an appointment at clinic a week on Monday, to get my histology on the mass they removed and to have another round of tests for the mass under my arm, which the radiologist found when he was skin marking me. I am now so confused as to what they are looking at...

What was a simple in keeping with a fibroadenoma, now seems to have gone on to be a right circus. Still smiling though...

Still chronic pain in my upper arm, hope that goes soon, I feel like I want to get in there and just remove it!

Hope all is well with you two.

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Sommer
u ok?
cath x

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi sommer
how are you doing after op

liz

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi ladies,

Had surgery today, what a bloody palava! Radiologist said I didn't need a wire, that he was going to decide how to locate it, then told me I have another mass in my armpit, after another, (my fourth) ultrasound!

Came home, after 14 hours, as my blood pressure went to 87/52, so they were reluctant to allow me home, but as I got coffee down my neck, it went up to what it was on admission, 101/60, let me home, I walked in at 9.00pm and the house phone was ringing, consultant's secretary, asking me to go back on Friday!

Never heard of a clinic calling someone at 9.00pm at night! Onwards and upwards, thanks all for your kind words! Back to the drawing board. What was initially a "simple" fibroadenoma, has now turned into a right circus!

Sheesh!

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Re: trying to keep sane whilst waiting, waiting, waiting........

HI Sommer
good luck for you op wednesday hope they do a neat job

liz

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

HI Sommer

yep feeling a little bit stronger every day - do you mean tomorrow for your op? hopw every thing goes as planned - just make sure you tell the anethitist to put plently of antiemetic in your iv before you wake up!
let me know how you get on.

Cath x

turquoise
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Good luck with your op Sommer x

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Cath,
Hope you are feeling a little more recovered!

Sending you good thoughts for a week today. I go in on Wednesday for my removal! Had my pre-op today...

Sommer

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi there

had my second lot of surgery on 29th as planned. The surgeon said he had cut deeper and wider round the scar tissue from taking out the fibranoma in January; I have a follow up appointment on monday 12th march to get results so 10 days to wait- hopefully there will be clear margins from the dcis that was attached to the fibranoma cos the thought of a 3rd op...........
i stayed in 2 nights because of drains but to be honest i felt so rubbish from anestetic and/or morphine so didnt want to move - even now i still feel 'woozy' but 1 day at a time eh.
I can feel a bit of an indent in my breast but the surgeon went through the scar from jan - have got steripstrips+++ then a big dressing so cant tell if scar is any longer yet.
I didnt feel nearly as panicky about the op this time tho cos it was same surgeon, same aneathetist and same nurses so felt in very safe hands.
Just glad its done....
Cath x

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Re: trying to keep sane whilst waiting, waiting, waiting........

Thinking of you Cath, oh yes the waiting room diet, that's a good one, not quite as good asthe divorce one, but still one where food for me becomes a minor factor!

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

thanks Sommer

Ahh i really feel for you - the anxiety of not knowing is the pits - it feels like someone is crushing your chest doesnt it - and on top of that you have pain as well - i bet you think about whats happening first thing in the morning and last thing at night and there's nothing i can say to make it feel any better, you have to do the journey but at least on these forums there's people to walk it with you.
make sure you keep eating because ive lost 1 1/2 stone since november and its not a diet to be recommended.

I will post here when im back home.
take good care Sommer

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi worried,

Hope your evening is going well!

I am very much still in limbo land, maybe because I feel in chronic pain all of the pain and a crappy row with my OH which has made me feel low!

Good luck for your surgery tomorrow and I hope to hear from you when done, to see how you're doing.

I have this niggling feeling about all what is going on with me, and am relieved to be seeing my doctor next week. I suppose the surgery is on my mind, and I am still niggled about this second lump, will I have to go through the whole screening process again? The final report on this, etc all going on up there in my head... Plus the night sweats, the pain, I feel completely overwhelmed when I should feel relieved at what the consultant said to me last week, and I just don't. I am not normally an anxious person, but today anxiety is tearing through me like a rollercoaster and while I have a forum of my own where I am admin, I don't feel like piling it all out there!

Just feel a bit rubbish, anyway, best of luck tomorrow, Cath...

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

see last post - sorry must have pressed the submit button by mistake.........
......have just finished work and written on the 'in/out of office' board next to my name 'back in Spring!' and that made me feel better because Spring is a hopeful time, a time of new life.

Hope you all having a good day.
Cath

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Thanks for your good wishes guys< hopefully will be back home before weekend.
Lizzy - your story made me laugh and I havent laughed much lately!

Sommer43 - well doc said fibobranoma could of hid cancer but also that a very small percentage of dcis doesnt show on an mri (its a much bigger percentage according to studies that dont show on mamm /US) - So i am considering myself lucky as so many other stories I have read on these forums are so much worse than mine and yet the ladies seem to keep so upbeat.

Have just got home from work -

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi worried
its good that they are moving quick with this
i was told i would have to stay in for 5 day cause of the 2 drains but managed to get out with them still in i had to monitor the fluid and call the hospital if the suction went go in and have them change so it is do-able mind you im on the isle of man and only 10 mins from hospital
i had my mx end of nove so was panicking about xmas shopping gifts etc deceided to go to town shopping with one of my girls so we stuck the two bottles in a handbag and of we went
went to m & s and to my daughters disgust i just placed the handbag on the counter to get my purse out my daughters face was a picture of disbelief !! i turned around to be asked by my surgeon well no need to ask how you are do I ?caught well and truly this was 5 day after mx the things we do to go shopping !!!!
any way i have sidetracked good luck i hope it all goes well XX

turquoise
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Worried, good luck with your op and I hope you get clear margins x

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Cath,

Good lord, you're going through the wringer aren't you?

Let me get this straight, the fibroadenoma is hiding your DCIS?

Oh, I wish you all the best for Wednesday...

I hope you will let us know how you are going!

Your head must be mashed, you poor thing! My head is mashed just reading it, so how you must feel I can only imagine.

One step at a time, Cath, that's all you can do!

Many hugs to you!

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

hi Guys

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
Cath

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Cally

Am with you, would never leave a lump in. How frightening for you, but at least it was out and you could deal with it!

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Re: trying to keep sane whilst waiting, waiting, waiting........

Funny things, fibroadenomas... My mass measures 11mm, I can feel mine! MMG showed nothing on me either, it was ultrasound that picked it up and like yourself, I was shown it on the screen!

I bet you are wondering which way around it was, I do know that fibroadenomas in older women are often recommended for removal because of the mass hiding tissue in the future so hard to establish, which came first for you.

I agree, I don't want anything inside me that shouldn't be there, I can feel mine and while it is not that causing me the pain, it is the underarm which is, (which could be something entirely different) at least I am slowly ruling out further problems by opting for removal.

Enjoy your shopping and I hope to read your results tomorrow!

cally
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hello

I agree..I would always always always ask for any lump or bump to be removed. I found a lump which the doctor and the consultant both agreed it was a cyst..99% sure. But my consultant , bless him, had a gut feeling and asked if he could remove it..yes it was a cyst with cancer cells inside. A year later at my first mammogram a second lump was found in the other breast and it had been missed by me and by the usual grope test!!! So if the first one hadnt been found..........!!
x

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

yes i do have a BCN but my mri images are due to be discussed at the mdt at 9am tomorrow then my appt is at 1040hrs anyway.
my fibranoma measured 16mm - but i couldn't feel a thing and i'm only an A cup - i first went to my gp with breast pain and good enough even though he couldntt feel anything he referred me straightaway to the breast clinic. The mamm showed nothing but the ultrasound showed the fibranoma as a dark circle (the radiologist showed me the screen when she was scanning) even before she did the FNA she said she was very certain it was a fibranoma - i am now wondering if the fibranoma was actually hiding the dcis or if the dcis just wasnt showing up fullstop??
funny thing is ever since my first appointment at breast clinic back in nov 2011 i have never had the breast pain again and if i hadnt had that in te first place i would never have gone to GP - so make what you want of that one.
i know everyone is different but with my experience now i would never hesitate to have any lump or bump removed - like you said its 99% certain to be fibranoma but better to have those odds when its in a little yellow pot than inside your boob.
Am going into liverpool today to do a little retail therapy to take my mind off tomorrow.

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Re: trying to keep sane whilst waiting, waiting, waiting........

It is the not knowing, you're absolutely right and I left my clinic with an uneasy feeling in the pit of my stomach, just couldn't get my head around it all.

I know what you mean when people state "Stay strong" the best for me is "You must be so relieved it is not cancer" I get that one all the time, of course I am relieved, however, the journey for me is not over yet, on and on it goes, I will not be relieved until that thing is in a lab where it should be.

Worried? DId you not have a breast care nurse you could call? I called them for my results, rather than waiting for my clinic appointment!

Do let us know, as you can see this area of the forum is not so busy...

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi liz, hi sommer43

i will let you know how i get on for sure - i think the not knowing has got to be the worst - i'malmpst looking forward to my clinic appt on monday (how sad is that! ) then at least I'll get a date for my next surgery and be one step closer to gtting the cancer out - i swaer if one more person says to me 'stay strong' i won't be responsible for my actions.
thanks for your replies

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Re: trying to keep sane whilst waiting, waiting, waiting........

Hi worried,

You have been given the run around and I wouldn't be happy!
I am 43 almost 44 and peri menopausal, I too have been diagnosed with a fibraodenoma, which I opted for a removal. I was almost sent away with a cheery goodbye when I asked for the removal, straight away the consultant got out her diary and then she examined me again, she then said a second lump was there, (I just had a gut instinct about this fibroadenoma, and I want it out, on a slide in a lab not in me) so am now booked for surgery on 7th March with a wire in to check they are taking the right lump out!

I know there is another lump there, I am not happy with this fibroadenoma, despite all the good news that it is not cancer, I receive...

My FNA came back inconclusive, then three biospies, it has just been one long arduous task to get sorted out, thank goodness I am going to my GP who has been on annual leave, who also felt more than one lump, yet only one lump showed up on ultrasound, nothing showed up on MMG!

I am pleased that Lizzy has responded to you, I am so sorry you have this worry, it is awful when we never know what comes back as indefinitive, my birad rating was a B3, in keeping with a fibroadenoma. Were I 23 instead of 43, I would have been satisfied with the watch and wait bit, but am not...

I do hope you will let us know what your results are.

Good luck

S

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi worried 23

my was picked up on regular mammo when i was 51 dont know how long i had had it who knows ? i had mammo ultra sound then core biopsy
yes it was a shock but everything went so quick i went for ct sacan that afternoon thurs bone scan tues and mx /chest muscle removal and auxcillary node clearence wed they didnt hang around everything went well op wise post op wise and now back in the world of living
i cant have chemo or rads as they dont work on this kind of tumour so just have to hope it dosnt recur there is not alot know about this type even my gp said ive heard the name in med school thats about it
good luck for monday
liz

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi again Liz

have just looked at what you were diagnosed with - that must have been such a shock to you to think you had a benign condition then be told that - and very frightening - hope things are better for you now.

worried23
Member

Re: trying to keep sane whilst waiting, waiting, waiting........

Hi Liz

I know you would think they would 'just in case'. I have to keep positive though and be thankful that I did have it removed as the cancer could have gone undetected for ?????however long. I have since been been told that fibranomas arnt usual in my age group (im 47) so if i hadnt had that i would have never known about the dcis.
Its scary stuff isnt it - my emotions are all over the place - was your 'fibranoma' diagnosed by a FNA?

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Re: trying to keep sane whilst waiting, waiting, waiting........

hi worried 23

sorry you are having to wait so much
i to was diagnosed with a fibrodenoma back in 2010 the hospital deceided to leave it in 2011 it grew and i had it removed went back 2 weeks later expecting to just be checked for healing to be told that when it was biopsied it was a very rare and agressive form of breast cancer its name is cysto sarcoma phlloydes .
I wonder why when they remove any lump regardless of what it is they dont take a 1cm margin for just in case would this not prevent the need for more surgery ?dont know just a thought

liz

worried23
Member

trying to keep sane whilst waiting, waiting, waiting........

Hi there everyone

feel like i've been doing this waiting malarky forever.
Had first appointment in November then had to wait 2 days for a mammogram then another 2 days for an ultrasound and FNA then 9 days for the results of that. - was told it was a fibranoma and given the choice of surgery or not - I opted to have it removed and had surgery early January - another 2 weeks wait for final histology - went for appointment to be told, yes it was a fibranoma but attached to one egde were some 'abnormal' cells - another weeks wait - then on 30th Jan was told these cells were DCIS but couldnt say if there was any invasive cancer cells there as well or not- because the dcis hadnt shown up on either mammogram or ultrasound i had to wait another week for my case to be discussed by the multi disciplinary team meeting- went back a week later to be told that mdt had agreed on an mri with contrast dye but this would need to be mid menstrual cycle so another 3 weeks wait. Finally had that yesterday and am now waiting to get the results on monday 27th.
The consultant says that if nothing shows up he will have to do the surgery 'blind' and take out tissue where the fibranoma was and hope he gets a clear margin otherwise I may need a 3rd op. So am probably one of the few people actually hoping the mri shows something - but only dcis.
Sorry for 'war and peace' but it's like a nightmare that just goes on and on....