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post op&results

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Re: post op&results

looking back - i realise not everyone is the same - sorry, (chemo brain )

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Re: post op&results

Hi Flossied and Chica - good to hear from you both. I've just realised when i saw your post that we seem to have neglected this thread in favour of the "mx mid february" - not sure why its happened but if you have a look, it may give you an update on everyone. 3 or 4 of us have now started chemo with another 3 or 4 to go around easter.

Hope you continue to be "ok"

Kind thoughts

Lynn

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Re: post op&results

Hi Chica, good to hear from you. And hello to everybody else too.

I had my 2nd chemo on friday and so far, I've not been too bad at all - not even as tired as I was the first time. I too have suffered a bit with heartburn and indigestion so I got some Omeprazole prescribed for me this time, which have helped a little.

I did notice a strange bruise on the inside of my arm a few days ago and couldn't understand how I got it, but then I realised that the tenderness went right down my vein to where they put the cannula in my hand. I guess that vein didn't like the poison too much. Do the veins recover after chemo or is any damage permanent?

My hair is still hanging on......I'm not sure that it's anything to do with the cold cap.....my OH says its just because I'm too bloody stubborn to let it fall out! 😉

Anyway, I think I've rambled on for long enough. I hope you gorgeous ladies are all coping ok with the chemo.

Take care
Sue xx

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Re: post op&results

Hi to all, hope you are all ok? Havent been on in a while so thought i would just say hi.
Would love to know how everybodys coping!!Ive been ok apart from not being able to take any tablets,so had supostries instead for anti sickness.Also found suffered with heart burn & indigestion(never had before).
On wed its back for 2nd round so fingers crossed.

chica xx

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Re: post op&results

Hi ladies
Just popped in to say that I hope you're all doing ok after your first chemo and not suffering too badly with side effects.
I'm thinking of you all.

Sue xx

Re: post op&results

Thanks for your kind thoughts and wishes I will let you know tomorrow hopefully.
Sue I hope your hair holds out!! Not looking forward to the cold cap got my hot water bottle at the ready. x

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ps - yes i've seen some posts on here where people talk about their scalpbeing sore before it comres out - hope not for you.

Lynn

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Re: post op&results

Hi Sue - managed fine but wasn't prepared for it to be 5 caps @ 45mins, so quite a long time. I'm concerned it maybe wasn't tight enough i've got a wee head and don't think it was especially small. Also i found that it was warming before the end of the time each time. Like you i've got to wait now and see how much damage is done before next time. The team yesterday certainly were not great fans of it - not sure if they knew how obvious they made it. They say they don'tget great results.

Good Luck Sue

Lynn

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Re: post op&results

Congratulations on getting the first one under your belt Lyn. How did you get on with the cold cap? My scalp started hurting last night - I'm not sure if that's a sign that my hair is going to fall out or not? Its day 13 since my first chemo - maybe somebody can tell me. I'm just waiting to see how much I lose before I decide if I'm going to bother with the cold cap again next week.

Good luck to you tomorrow lala. I'll be thinking of you.

Sue xx

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Re: post op&results

Hi all - thanks for your kind thoughts for yesterday. I'm ok, bit wobbly and a bit "icky". Already got the metallic taste and the heartburn and have had to swap the contacts for my glasses so just about to phone the GP for something. All in all though at the minute not too bad, certainly bearable. In a horrible pending state now in case there's worse to come but so hope not.

Hope all sloshy, sore, tight, drainy bits are improving for everyone and very good luck to Paula, lala and chico with chemo - and obviously to anyone else i've missed.

Thanks again

Lynn

Re: post op&results

Hi Paula
I am with you I start 6 EC tommorow
Good luck x

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Hope it goes ok tomorrow Paula

Sue xx

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Re: post op&results

Thinking of you tomorrow paula xxx

chica xxx

Re: post op&results

Good luck for tomorrow Chica. I am a day behind you and start Thursday for 6 sessions of FEC. Hope you feel ok with it.

Paula x

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Re: post op&results

Hi chica. Good to hear from you. I hope the chemo goes ok for you tomorrow. I haven't been too bad at all......just waiting for the hair to start falling now 😞

Sue xx

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Re: post op&results

hi ladies hope you are all doing well??
Well it's my turn for starting chemo tomorrow.Everbody Iv'e spoken to have been really positive so we will see how things go.
Sue hope you getting on ok!!!

CHICA XXX

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Re: post op&results

Hi Sue

A lot of people have fairly few side effects - I felt a bit queezy now and again, and a bit tired, but really only at a level I would probably have ignored normally. I found I was a bit hyper aware I had just had chemo, and was expecting to feel things and then reminded myself that it wasn't much more than a mild cold/hangover.

The steroids always kept me awake the first night, that and nerves!

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Re: post op&results

Hi lala
After I'd had my chemo, the nurses sent me home with a party-bag full of meds, including anti-sickness pills, steroids, laxatives, immodium and a mouthwash. So at least I don't need to spend a fortune in the chemists!

Sue xx

Re: post op&results

Hi Sue
I start chemo w/c 8th March dreading it but pleased to know your experience was ok. I hope you escape the nasty side effects. I am going to try the cold cap if it doesn't work at least I tried! Going to stock up on all the recommended ginger tea, biscuits, laxatives etc. Do let me know how you are getting on. x

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Re: post op&results

Hi everyone

Well, I had my first chemo yesterday....and it all went ok. I'd had a bit of an emotional wobble the night before, but I was back in control for the actual treatment. The nurse on the unit was very positive about the effectiveness of the cold cap, so I went with it....nothing ventured, nothing gained. I found it quite bearable, just didn't like the fact that it covered my ears, so had to live in a muffled world for a few hours!
I'm feeling relatively well at the moment. No nausea/sickness so far. I feel a little bit like I haven't had much sleep, but that's probably because I haven't....don't know whether that was the meds or just the fact that I was worrying about the side effects.

Do you know when you start chemo yet lala? And how are you feeling Lynn - ok I hope?

Sue xx

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Re: post op&results

Sue that,s great news hope it all go,s ok.
I went to see my bcn who went through all my treatment with us.She is lovely & explains everything & most important answers all your questions.I think from some of the comments we do it differnt here my bcn explains things & what treatment , then go to see org on mon.
I should also find out in the next week when im to start chemo,really scared butlike you all wanting to get started.

chico xxx

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Re: post op&results

Thanks for your comments guys. From what I've read about it, I've kinda figured that with 6 x FEC I'm facing an uphill battle to keep much of my hair even with the best, top of the range, 'guaranteed success or your money back' Cold Cap! In truth, it's not so much the endurance test of wearing it during treatment that worries me most........I just don't think I will be able to cope with only washing my hair once a week and only brushing it on sundays! I have greasy hair, and if I go one day without washing it, I have to go out wearing a hat.....and that's just to walk the dogs!
I'm thinking that I might try the Cold Cap on friday, but if my hair starts falling out in clumps anyway, I'll just throw caution to the wind and start practising my Yul Bryner impersonations. (I would try Kojak but I can't be doing with the lollipops........bad for your teeth you know?!)
Sue xx

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Hi Sue
I am with Lynn on this one I will try to put up with the pain and cold if there is a chance I can keep my hair. It will be nice to get to the end of this with a little bit of me left!!
I will gladly leave the expensive wig in the box!

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Re: post op&results

My very close friend who had a double mastectomy at Guys London had
the cold cap and persevered throughout her chemo. She said it wasn't great (!) but she kept all her lovely dark hair! She was really glad she took up the offer but others in her unit didn't. So it really is a personal choice.
My friend said she couldn't cope with the baldness after everything else...She is 4 years down the road now (and really well on Tamoxifen) and still talks about the cold cap as her saviour. She took flasks of hot drinks and played Scrabble throughout!
Hope this information is ok to share as I am not in the same position after my mx.

Good luck to you all with your decision making and your chemo treatments. You all sound amazing!

Big gentle hugs to you all from Welsh girl x

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Hi I had my 1st chemo 15 days ago - I was terrified as I am needle phobic but in fact it wasn't as bad as I'd thought.
I had tried the cold cap at a pre-chemo meeting with nurse and had thought I wouldn't be able to cope with it as it was so heavy, uncomfortable and gave me a throbbing headache after just 5 minutes! I decided I'd give it a go as losing my hair is something I can't bear the thought of and it was actually bearable after the 1st 15 minutes or so. Took paracetemol 30 mins before and think that helped. No hair loss yet - fingers crossed.
Out of interest I'm having 8 x FEC and everyone I hear about is having 4 & 6 - anyone else having 8?
Hope all goes well for your 1st chemo xx

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Hi Sue - Wait til i tell you this! I went along for treatment plan yesterday and while talking to BC nurse afterwards i told her i was interested in the cold cap. Immediately i sensed she was against it, despite the fact that she said she was "being objective" Without warning she said "come along to the chemo suite and you can try it out" Thought I was going to throw up at this point! Anyhow - tried it, my immediate thought was someone has taken all my air away - it felt like a huge intake of breath and made me slightly lightheaded. Then it became really sore - not all over but in certain points, particularly my forehead. The nurse reminded me that if I couldn't bear this for at least 15mins i would have no chance for 2hrs. Push came to shove - I lasted the 15. I will try it again for real, but not sure how it will be on top of having poison pumped into you.

Lynnx
ps. the nurses view was that they weren't very effective and that most of her patients didn't tolerate them. Got the impression she may really have wanted to say you're going to be bald get on with it.!

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Hi everyone

Good to hear from you Bboonie....mad as a bag of frogs is exactly how I like my nurses. This whole BC thing is just so big and scary and serious. I need people around me who are completely barking otherwise I may find myself getting stuck in a state of actually believing this is really happening...and that would never never do!!

Hey lala. I'm completely terrified by the thought of starting chemo on friday....but I figure, the less time I have to worry about it, the better. I'm frantically trying to make sure any impending bills are paid now, in case I don't feel up to doing stuff in the next couple of weeks.

I'm also struggling with deciding whether to try the cold cap or not. Any opinions anyone?

Sue xx

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I am grade 3 HER+ I had a left mastectomy in Sept 09. I have just finished by 3x FEC & 3x TAX. The last TAX was 3 weeks ago today. I gave 1st of 25 rads tomorrow morning followed by my 1st herceptin. The nurses at the chemo day unit are all as mad as a bag of frogs, they helped to make my 1st chemo bearable. The time has passed by very quickly. My daughter lives in the lake district, I live in London, she is getting married in December. so I have something to look forward to. Keep positive you will get through it

Re: post op&results

Hi Sue you must be surprised you are starting chemo so quickly. I guess it is better to get it over with and you haven't got too much time to think about it! Good luck for Friday I will know when I start on Thursday! I kinda thought I would have about a week or so to wait maybe not. x

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Re: post op&results

Hi everyone

After chasing up the hospital as I hadn't heard anything, I actually saw the Onc yesterday afternoon. She confirmed 6 x FEC chemo followed by rads and Tamoxifen. Feeling brave, I said I wanted to get started as soon as possible - I've got a holiday to Spain booked for August and I'm setting my sights on getting there!
So, the phone rings this morning and its the hospital to say that I can start chemo this Friday - 26th Feb. Ok.......so now not feeling quite so brave!!
I have to say that everybody at the hospital has been so understanding and helpful.....the nurse in Oncology clinic is as mad as a box of frogs, but still lovely! Scared as I am, I really feel that I can trust these people to get me through this.
Sue x

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Re: post op&results

SORRY LYN FORGOT TO ADD YOUR NAME TO THE BIT ABOUT JOINING US THAT WAS TO YOU. GOD IF IM FORGETTING THINGS NOW !! WHAT AM I GOING TO BE LIKE !!!!! XXX
CHICA

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Re: post op&results

It was nice to have a chuckle while reading the different comments,loved the hat bit sue so typical of kid's. My own 2 girls 17/19 have been saying don't worry mum if you lose your hair we will go wig hunting!!!!
finty yes my bcn as already said that i will be having all 3 treatments,& am stil waiting for her 2 results!!!(not sure if thats right) It is so much to take in but good we can sound off to each other & share our experiences.
Sorry to hear you are joining us on this site, as you can gather by all our comments we are all new to all this but its great because up pop's comments from different ladies who have been throught what we are all just starting, with helpful advice &tips or just reassurance.
It has really helped me.
Thanks angel 12 the above applys to you as well,I was wondering how quickly the treatment starts.Im going back on wed to see my bcn who is going to explain all about the treatment before seeing the onc on 1/03/10.

chica xxx

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Re: post op&results

Hi y'all
Congratulations on the prospect of becoming a Nanna Chica......what a great thing to be able to look forward to. I'm expecting to get an appointment to see the Onc on 1st March too, in which case we really do seem to be living in parallel universes. Although, if my son announces that I'm going to be a grandparent I won't be quite so chuffed as he's not yet 15! lol.

I'm having rads after I've finished chemo, which I believe is the normal pattern for these things. I'm sure someone will correct me if I'm wrong. It seems that even with clear lymph nodes we get to enjoy a course of chemo anyway 😞

I'm scared witless too Lynn, but my ever-loving son made me laugh when I told him about the treatment. After he'd thought about it for a moment, his exact words were: "Mum, please, please promise me that you will never, ever go out in public without a hat on"! Kids......don't you just love them! lol

Sue xx

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Re: post op&results

Hello Ladies,

Sorry if you have to go through chemo, it normally starts around a month after surgery, I too had a grade 2, had mastectomy with immed recon (implant). Six nodes taken and one came back infected was advised to go through the chemo tred.

It does go quick and I can't believe I have my last one of six next week, don't get me wrong I have thought about skipping next weeks but I know that is daft when i have come this far, it is do-able ,
I had FECx3 and Taxolx3, and I start the radiotherapy the end of march.

All the best with all your treatments x

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Hi everyone - Hope its ok with you if I join this thread? Had pathology results this morning, treatment plan next Tuesday. Story so far is MX 28/01, expander implant fitted. Results this morning - lymph nodes clear, 17mm grade 3 tumour,no spread in the breast, er+ and still awaiting hers2 results. Been told by the breast consultant nothing in the pathology that says "a definite" for chemo but thinks it highly likely that the oncologist will suggest it with rads - she described it as having to weigh up potential benefits - but borderline.

I've been reading your posts and realise that with chemo likely it puts me in the same time frame as all of you. Hope that's ok by you? Haven't got round to doing the profile thing yet - 46 married 2 kids, 17 and 11, nr Glasgow - training and dev manager (in another life ie the one that was mine until 8 wks ago )ps, absolutely witless at the prospect of chemo.

Kindest regards to each of you.

Lynn
x.

Re: post op&results

Hi Chica

I don't know if you have already been told you will have definitely have chemo, but when I was first dx I was told if there was no lymph node involvement, it would just be rads and no chemo. Unfortunately the lymph nodes were nearly all infected - so no avoiding chemo. I am so glad your dx is better. Good luck.

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Hi Chica,

That's great news for you. What a relief hey?.

Mine came back good too, stage 1 so just got to get through chemo and rads then hopefully I can get on with life! 😃

Paula x

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I went yesterday for results, good news is he's sure he got it all.
lymp nodes came back clear.
I've my appointment to see my onc on 1st march so I will find out when i start chemo(like you sue im not looking forward to it but want to get started now)
While I was there yesterday I forgot to ask do I start rads at same time or is this after chemo, & then tam .
Your mind just go's a total blank .
The really good new's i got yesterday was from my 19 year old daughter, she's pregnant so im going to be a nanna in august,something nice happening.

Once again thank's for all comments& advice they really do help those of us that are new to it all.

chica xx

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Hey lala
I don't know about you, but I just want to get started with the chemo as soon as possible. Its probably going to be another 2 weeks before I get to see the oncologist and then I presume there'll be another wait to start treatment. I'm going to have to stock up with bottles of red wine to see me through! lol
Are you still sore from surgery? My armpit still feels like somebody keeps sticking a knife in it!
Sue xx

Re: post op&results

Hi Sue My experience is similar to yours except my grade 3 is also her2+ so I need herceptin. My appointment with onc is 25/2 so we will prob start chemo at the same time. It is scarey but strange how you do feel stronger once you have a plan. It would be good to talk to someone who is at the same stage.

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Re: post op&results

Oh that's rough for you chica.....there's so much waiting in this game!
Fortunately, despite an hour wait to see the consultant yesterday, I did eventually get my results. The good news is that the WLE margins were clear and sentinel node biopsy came back clear too so no further surgery required 🙂
Unfortunately, however, the tumour was Grade 3 which is not so good and means that I'll need chemotherapy and radiotherapy and tamoxifen. I forgot to ask loads of things such as what size the tumour was, so I'm going to ask for a copy of the pathology report so I can take it all in slowly.
I was a bit shell-shocked to hear that I'd need chemo as I'd done a good job of convincing myself that it wouldn't be necessary.
So now the waiting to see the Oncologist starts.....but at least I know what's in store for me now.

I know everybody says this, but I have found the posts on here such a big help. Everybody is so supportive of each other and it does make me feel like I'm not alone.
Thanks for thinking of me Chica. I hope you will get called back before the end of the week.

Sue xx

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So there i was yesterday trying to keep my self busy until it was time to go for stitches out & hopefully get results.
Yes you've guessed, the phone rings & it's my breast care nurse ,results are not back should be back wed/fri. I was pleased that she rung to tell me & didn't wait till I got there.
So still waiting !!!!!!

Sue hope you got on ok, I Was thinking of you yesterday.

chica

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Good luck tomorrow Chica

Sue xx

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Hi Jbug and all

Just re your comment about getting clothes on and off. I too had Bi-lateral and implants in December 09 and wore a lot of camisoles and vests that I could step into. And front opening cardys and tops. I'd had my SNB last summer so didn't have that to contend with at the same time - that's a big op you've had so take it easy and don't be too frustrated with yourself. Oh, and do the exercises - they really help, but again, easy to begin with!

I hope you all get the best possible results....

All the best

River x

Re: post op&results

Hi
I had to wait 23 days between my first WLE + SLNB and getting the results, and then 28 days between my second WLE and getting those results. First time Christmas & New Year delayed things, plus Pathology needed to prepare new slides, second time they sent the slides off for second opinion and that delayed things by over two weeks. I was told it was very unusual to experience such delays, but obviously it can happen. I'm sure most cases are reported much more quickly but I had two experiences of going to the hosp to get the results only to be told they weren't available. I felt like kicking something very hard!! I wished they'd phoned me to tell me not to bother coming in, since its such a waste of a day when you psyche yourself up to going, and then have to pick yourself up afterwards.
Anyway - I hope all the results of people on this thread come in a very speedy & timely manner!! Knowledge is power!!
Cheers
Maggy

Re: post op&results

Hiya,

I had a double mastectomy and implants on 3rd feb, still struggling post op to be honest, loads of fluid, numb/burning arm (must be from sentinel node biopsy) and frustrated at not even being able to put my top on/take off!arrggh!

I have my pathology results this coming Tuesday, I am already feeling positive about it as my nodes were clear, despite me having multi-focal cancer in approx 8 lesions in left breast. The 3 lumps found on ultrasound back in dec were grade 1...so fingers crossed Tuesday will be some fairly good news.

It's horrible all this waiting isnt it? It never seems to end.

Good luck for tomorrow. x

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Thank's for all the comments they really do help.IM Must agree it's the waiting for results because your mind goes round &round in circles.
I think were im lucky is our breast care unit is fantastic, & nothing seems to be any trouble to any of staff.
good luck to sue, who also goes back tomorrow.
Speak to you all soon xxxx

chica

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Re: post op&results

I'm new on here. Just also want to sound a note of caution re time-scales. I had my op on 19 Jan but am still going through a waiting process due to;
1.I got an infection and had to be re-admitted for 4 nights
2.The infected wound has taken till now and is although not now infected is still not healed.
3.I saw oncologist on Friday and now will have CT and bone scan before they decide what chemo I should have and when to have my next op which is to clear remaining lymph nodes.

Its quite hard to deal with all the waiting sometimes! Also the grading in my case does not seem to be entirely clear-cut. Its come out as grade 1 but surgeon says its behaving as grade 2/3, hence the chemo. Seems a bit odd.

How have you found the post-op pain? I had quite nasty pain around the area esp down my upper arm but it has imporved this week. I still take 3 paracetamol a day but I take 2 of those before going to sleep. This is an improvement. The wound is also healing and imporving - just slowly! Breast scar is fine and very neat although sore at times. I assume this is standard. Comments welcome.

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Hi Chica.
I'm in exactly the same position as you. WLE and sample nodes on 3rd February and go back for follow-up appointment on Monday afternoon. So looking forward to another interminable wait in a cheery hospital waiting room, staring blankly at a 6 month old moth-eaten copy of Take A Break Magazine while my mind maps out 20 scenarios per second! What fun!! ;-(
Sue

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Chica - they might not have all the results back by then... just to warn you so you are not suprised... also what usually happens is that units have weekly meetings where they discuss people's results and it is a joint decision as to what treatment follows...

I do hope the results are good

Take care

Theresa x