Thanks for that Willowherb. Doesn’t sound great, but I’ll be persevering too once I get them. I hope the SEs get more manageable as time goes on. Hugs.
I am on Anaztrazole.. I can only speak for myself but...
I think I have had all the 'very common' symptoms and some of the 'common', sometimes some worse than others.
The worst is the man with the iron bar who lives in my bed and bashes my shins from 5am. I also wake up with hands like bunches of bananas
That little pill doesn't half pack a punch. I hope the S/Es become more manageable with time ( I have taken it for 3 weeks now and some have eased off) and especially the wee scunner with the bar!
I am now trying glucosamine and moving the pill taking to last thing at night to see if it helps.
SOme people have no S/E's at all , so it's all very personal.
A tip - My ONC told me to watch what brands are dispensed as a different brand of the same drug CAN give you different SE's.
It was my surgeon who gave me the prescription and both consultants were very laid back about when I should actually start taking them. I think they recognise it is a big step and that we are worried about it as the SE's can affect your quality of life.
I was also told that if I didn't get on with anasrtrazole then I could be changed to another if the SEs were really bad.
I certainly do not feel the same person as I was at Christmas . However, if it stops cancer coming back then I will keep popping the paracetomol!
Sorry to be so gloomy about it - as I said SE's are a personal thing as is our tolerance of them.
PS 3 rads down 12 to go!
Stirts ... good luck with your surgery tomorrow. Let’s hope this one sorts it out.
Willowherb, sorry to hear you’re suffering SE from the tablets ... out of interest what are you on? I’ve just got my first onco appt for 6 Feb and assume they will prescribe at that time. Would like to do some research prior as I know they all come with a range of SEs. Don’t like the sound of feeling 90, especially since I feel quite fit at the moment!
daisy ... hope your recovery still progressing well.
hugs to you all.
Well the pills are pest and I now feel about 90 with all the bone pain and not climbing stairs well. Also the nausea has not been good this week either.
However, first rads today - 13 to go!
Hope ypu lose the drain and the results are good
Hi Willowherb, not in any pain now just a bit sore from the anc but no real pain. Still have my drain but I am expecting it to be removed today when the district nurse arrives. Hope your treatment is going well x
Gosh good luck Stirts. I have just had my third and am awaiting results next Wednesday. I have been told that a 4th is not an option. Best of luck, let us know how you get on x
I'm going in for the 4th re-excision on Friday. Just can't seem to get these clear margins at all...very very nervous now and feeling really down
Glad that you are home and recuperating.
Interestingly, my 3rd incision was quuite sore for a few days and then suddenly absolutely nothing - so here's hoping for that for you
CoCo - so pleased you have at last got results. That must be a relief.
I finally start my rads this week coming - 15 sessions and the pills are a little plaguey though some SE's have settled.
Ironically I recieved invite for smear test today - that can wait for a month as this is as much as I can cope with at the moment. After this last few months I think the wait for the results for that will be very stressful
Thanks ladies for your thoughts and wishes. I am home. Third incision into breast is very sore but then so is the anc wound. Just a waiting game now
Daisy I hope all went well yesterday and that recovery will go smoothly. Fingers crossed that this one sorts you out.
I finally got my Fish test result this afternoon, and I’m HER2 neg. It took three tissue samples in all, goodness knows why. Anyhow, will now get passed across to oncology for radiotherapy planning and tablets, so can start to look towards the next phase, which will be February. Just need to stay upright on skis in a week or so and not break anything lol!
Hugs to all of you.
Hello willowherb, thanks for your thoughts. Still no results as apparently the sample they sent to pathology for the fish test wasn’t suitable so they’ve had to send another sample. So I am resigned to waiting a bit longer. Will not start any treatment (whatever that may be) now until after I get back from a group skiing holiday at end of January. Hoping however to have the plan in place so that it starts right away in Feb ... just as hubbie has the first of two cataract ops and elderly mum has monthly eye injections for wet macular degeneration... we are certainly getting our money’s worth from the nhs at the moment!
I hope you you are all sorted with your future treatments and that you don’t have too bad reactions to them.
best wishes and hugs.
I hope you managed a good Christmas and that you could , for a little, forget the merry-go-round we are all on. Thinking of you next week and fingers crossed that this time it's all sorted.
Again, I hope Christmas was peacful and that finally you got your results
Let's just hope 2019 is a better year for all of us
Know how you feel. Had my first surgery in Oct, second in November and I still have to wait until 10th Jan for my re reexcision and anc. Thought this was meant to be the easy part but I still dont know how many lymph nodes involved and as you can imagine I have all sorts going round in my head while I am waiting for them to be taken away. People are saying to me I can forget about it now and concentrate on Christmas - yeah easy! Take care x
Feeling blue today. Still no result back for HER2 FISH test (done because first test was borderline) despite first WLE in Oct and re-excision in early November. Surely It doesn’t take this long usually. So going into Christmas still not knowing treatment pathway. BCN said that it might be back for next Fridays MDT meeting but may not be. I know margins all clear ditto lymph nodes but so hard not having the full picture.
Anyway, hits from the musicals on, marzipan on cake and will endeavour to be patient a while longer. Sorry for negativity, so far I’ve been positive but sometimes it bubbles up!
sending you all best wishes for the Christmas period however you spend it!
That's a pest she is away! Just when you need an informed conversation about it all.
Thinking of you - this is all so hard
Hi Willowherb, my bcn is on holiday this week but I will have a long chat with her on Monday before I make my decision on Wednesday. My surgeon says that guidelines say he has to recommend mx but he understands I am anxious about losing my breast and as all the margins are clear, even though one is not big enough and will need shaving he will give me the choice. I am already having the anc and dont think I can cope with that and an mx at the same time. He has stated that this is the last time he will go in and a 4th surgery with be for a mx if necessary. I feel I need to give my boob one more chance and we've been through so much already.
What does your durgeon and bcn think?
My surgeon seemed keen to go with surgery 3 so I took his advice. I was asked if I would look back and regret that I did not make an effort to keep my breast. Though I did get the impression that surgery 4 would be mx.
I did wonder though whether I should have spared myself the uncertainty and another GA and just get the whole thing sorted for good. 3 in the morning is a helluva time for worrying
So sorry to hear youi have to have ANC as well
I don't thiing there is a right or wrong decision. Whatever you choose the nasties will be gone in the end .
It's so nice to be moving on. I felt like the odd one out for so long... everyone else I ever met moved on leaving me still with more surgery to get through.
Now to get to the chemist with the presciption . Just hope I don't get the nasty side-effects
Hope you get the HER results soon -please let us know. 5 weeks to results -agony
fingers crossed for you xx
Willowherb think you have just made my mind up for me. Just been for my results from my second surgery and one lateral margin was not clear by 1mm. I have to go in for anc anyway and I think I am going for third time lucky too otherwise it will be mx but I feel that I should give it one more go. Glad that all your surgery is over with. Ive got a week to make up my mind ...
Great news Willowherb, so pleased for you!
After what seemed like the longest 5 weeks I saw my consultant today, and yay like you the re-excision worked. Clear margins, and nothing in the sentinel lymph node either. Hurray!
So like you I will therefore be moving onwards, but the only fly in the ointment is that they still don’t have a HER2 outcome for me - first sample was ‘technically’ a failure, so sent off again and this time came back inconclusive, so off it’s gone for a third time. Results either this Friday or next. Really hoping that it comes back HER2 neg not positive so that I don’t have to make the decision re chemo or not.
Well it was 3rd time lucky for me
All the DCIS is cleared and no more surgery needed.- thank goodness as not sure I could face another re-excision
Will now graduate to the radiotherapy and hormone treatment threads - yey!
Thanks for your best wishes and hugs... Will let you know when I get the next results
Gotta stay positive about this!
Just wanted to wish you the very best for OP Nr 3. I also hope that the wound is going to heal as quickly as possible afterwards. I so feel with you - re hugs and fears of being bumped into by strangers, and trying to get used to looking different, again. I cross all fingers and toes for the best possible outcome for you this time round.
All the best, xxx
Thanks so much for your warm words - I'm sorry to hear you're facing such a long wait. Fingers crossed you'll get the best possible news when results come.
Glad to hear you're keeping busy and that you're going back to work. A change of focus is such a healthy thing!
I'm now waiting for the Oncotype test results, have a fertility clinic appointment coming up tomorrow, and still don't know whether Chemo will be recommended/beneficial or not, but I've decided to make the most of the 'waiting time', will try to work more again (I'm self-employed) and keep myself busy with whatever seems 'normal' or helpful in the short and/or the long run.
Wishing you all the best,
Coco - so sorry you have to wait so long for results of #2, I hope to be getting my #3 by then and I haven't had the op yet. It's the waiting that really gets to you...
Op soon and then another 3 weeks of nightly crop top wearing, bracing myself for removing the dressings after 1 week and seeing how changed I am again... and even more weeks of no real hugs and being stressed in crowds about getting bumped...
If it gets rid of it it will be worth it... though at the back of my mind at 5am is still the what if?
Thank you all for the virtual hugs!!
Hi Rapunzel glad to hear your re-excision results were good and you can move on to the next stage.
Willowherb so sorry your news wasn’t as positive. I hope your new surgery date isn’t too long. I’m one week on from my re-excision and won’t get a results clinic till 12 Dec so that’s going to be a very anxious wait. Part of me is thinking yep, it’s all out so delay not a problem and another part is going but what if .....
Coping by getting lots of jobs done off the “things to do sometime” list, and I’m going back to work on Thursday for a complete change of focus. Just two days a week basic admin job non stress ... if I was still teaching I wouldn’t be going back lol!
Hugs to all on this thread.
I'm so sorry to hear that! I hope that you'll get clear margins this time round. Is the surgery soon (to avoid further delays)?
Sending you big hugs,
Great news re your clear margins.
WIllowherb I’m sorry you’re having to go in for another op. So hope that this time your surgeon manages to get everything. Good luck xxx
You must be so pleased to be clear...
Afarid I am not and my surgeon is going in for a tthird time
What a pest this all is!
Thank you! Thankfully, the margins were clear the second time round. Now I'm waiting for the appointment with the oncologist to discuss further steps. The surgeon and breast cancer nurse mentioned that an Oncotype test may be suggested. That might delay finalizing a treatment plan. Well, we'll see. It is still a bit of a waiting game at the moment, but just now I'm happy I don't have to go back for surgery a third time round.
Just wanted to send my besdt wishes to you for a good outcome today and that they are ablet o finalise your treatment plan
Getting results today re re-excision. Can't deny I'm rather nervous. Let's hope they got it all this time round, and that we can move on and discuss/set up a treatment plan now. Please keep fingers crossed, everyone! Thanks!
PS: I found an article that looked at women with several re-excisions. Four was the maximum recorded in this study (and very rare), I believe.
How are you doing? I hope well. The waiting (and everything else ;-) is getting on my nerves, too.
I should get my results this Wednesday. Fingers crossed margins will be clear this time. Yes, fishing in the dark - that's what it feels like.
I wouldn't want reconstruction either, to begin with, but let's just hope for both of us that we can keep our somewhat smaller breasts.
Wishing you all the best,
Hi Rapunzel - glad to see you were done with no problems - how long do you have to wait for results?
The info I have is that the pre-cancer is only visible in the lab so 'fishing in the dark' is how I would describe my experience.
If there was a reasonable chance then I think I would go for a lumpectomy again, though I did notice today that my boob is noticeably smaller now than the other.
I don't fancy reconstruction if I have to have a mx (even though the tummy tuck sounds useful) . But I don't want to lose it at all really.
It's just all the waiting, and recovery time , over and over....
I'm also back from the second round of anesthesia land. Apparently it all went smoothly (that's what the surgeon said) - fingers crossed I don't have to go for a third round. I was also less nervous the second time round, and I have the feeling that because it was a shorter operation, recovery might also be a little swifter. Anesthesia was different for me, too (different doctor - different drugs, I wish they would tell us more about what we're being given).
Willowherb: I've been told that some ladies need three operations (not sure about more, though). If the margin is not clear this time, I'll have to have a good think about what to do next - and a good, long talk with the surgeon. I'd probably go for a third operation, but I'm beginning to wonder whether there might be ways of checking how big this thing really is. I haven't had an MRI so far, for instance, but I'm not sure it would show up on that.
Anyone any experience, ideas with regard to this?
Does anyone know how many times they can do the lumpectomy?
I suppose it does depend on how well endowed you are, but is there an ethical limit?
Well I have been done (again)!
As before with the SNB and original WLE it was day case.
The surgeon went inthrough the original scar and removed more tissue to , hopefully, get clear margins. Results not for 3 weeks though so it's going round in my head what to say if they are not clear this time... go again or go for the mx
Pain not bad, just paracetomol and ibuprofen. Constipation a bit of a problem , but don't know if that is down to a different anaethetists chosen cocktail or the codeine that I took briefly at night.
I was also not so worried this time about the op and ga as I knew what to expect.
Now just the wait...
I had a re excision and found the recovery much easier than the wle/snb. I had no problems healing afterwards and was a day case. I was checked by my surgeon on the day I signed the consent which was a week before my op. This was mainly to see how the re excision would affect the shape of my breast. My nipple area was excised at my first op because of the position of my tumour.
Wishing you a good recovery and results
I had a reexcision on the right following my therapeutic mammoplasty for bilateral BC two weeks earlier. I was worried about my surgeon cutting through the original wound but in fact she said it meant she was able to ‘tidy up’ the area and also ‘debride’ the wound (getting rid of dead skin I believe). She did check the wounds the day before my surgery because I had healing issues after the first op and I was at the hospital for a wound check aanway. She then said if I wanted they could do the reexcision the following day as they had a slot in theatre. I don’t know if they usually check the wound before hand in usual circumstances. We discovered my healing problems happened because she had inadvertently used chloro-prep to clean me before surgery and then to clean the wounds post surgery and we now know I’m highly allergic to chlorahexadine - the main ingredient. Once that issue was resolved the wound healed well. The surgery itself was much simpler and quicker than my TM. I don’t remember being in pain but I was on strong pain killers.
Good luck and I hope you get excellent results from the second op.
Best Wishes Clare
Joining up with you on this one Rapunzel...
Anyone got any experiences to share? I presume it is a lot quicker recovery as theer is no SNB, but is it more painful going back in again?
I have a re-excision coming up at the end of this month. My first operation was on 1 October and my breast is still swollen, feels heavier than the other (healthy) side, and is on and off a bit painful from the first operation (the nipple in particular doesn't like the world at all at the moment). I guess this is all normal. (?)
Does anyone among you have experience with re-excision? Did your medical team check your breast some time before the second operation, or just in the morning of surgery day? Should I try and show it to someone if I'm concerned it might not have healed well enough - or does this not even matter under the circumstances?
As ever, I'd be grateful for any and all advice.