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November 2018 Surgery...

92 REPLIES 92
Member

Re: November 2018 Surgery...

It's strange how everyone is told different things - I was told that one re-excision is the norm and doing a second one isn't very common. No-one mentioned that back muscle could be used to help reconstruct the breast. I have to live with my mx now but wasn't really given much choice even though there was only DCIS left and no-one could tell me how much!
Member

Re: November 2018 Surgery...

I would have a re excision. I was told that after my TM if it didn't get clear margins I could have a re excision and also they could use my back muscle too if need be. x
Member

Re: November 2018 Surgery...

Thanks Quaggie.  I had a mammoplasty too.  He did get a clear margin but just not enough by 1mm.  Think I will give it one more try and then I can give myself more time to prepare for the mx if it does not go well.  I keep changing my mind though ...

Member

Re: November 2018 Surgery...

It is a hard decision to make isn't it? I was told after an WLE and re-excision that my margins weren't clear but that they couldn't do a third re-excision, because I'd had a therapeutic mammoplasty the first time. The BCN said it was like origami and the surgeon didn't know where the margin would be in the breast so I would have to have an mx. I wish someone had told me that beforehand as I might have questioned it a bit more.

When you meet your BCN I'd ask if they are concerned if there is anything else in the breast beyond the margin. I was told that the mx might reveal even more than they'd been able to see before in the tissue.

Luckily for me it looks like there was nothing else scary beyond the DCIS in the mx so I've been told no further treatment needed beyond the hormone therapy for my ER+ status.

I know that being faced with an mx can seem very scary and upsetting but it can be managed. I was terrified of the op and how I would look afterwards, plus losing a breast seemed such a major trauma. But I'm dealing with it ok - I've still got a long recovery road ahead but it's getting easier each day.

Hope you can get the best support and advice to help you make the right decision DaisyDi. Feel free to ask any questions about my mx if you want xx

Sending you strength and hugs xx
Member

Re: November 2018 Surgery...

I had a mastectomy but radiotherapy is not off the table. The oncologist is for it but the surgeon thinks the benefits are small.

Member

Re: November 2018 Surgery...

Hi Kathyx I think I will still need radiotherapy if I have a reexcision.  Need to have a long discussion with my bcn on Monday.  She is on hols this week.  Funnily enough the radiotherapy isnt as much an issue for me as everything else but until I have all the lymph nodes removed we dont really know what we are dealing with other than a grade 2 idc surrounded by DCIS.

Member

Re: November 2018 Surgery...

Would having a mastectomy allow you to skip radiotherapy or doesn't that matter for you? I've been wishing I'd gone down the mastectomy route this time but that's probably easier for me to say, having had one before.

Member

Re: November 2018 Surgery...

Just got back.  One margin was not clear by 1mm.  They definitely want to do the axillary clearance and I have the choice of mx or one more try to get clear margin on lateral side.  I have a week to think about it.  I am leaning towards third reexcision as I have plenty of boob left and another mm or so wont make a difference but a mx is a huge issue for me at the moment

Member

Re: November 2018 Surgery...

Daisydi have you had your results yet?

Member

Re: November 2018 Surgery...

I am back at work today, for a short while anyway. I am doing ok, no complications and I am healing well. My arm is a bit stiff and the skin at the back is very sensitive like I have been stung by nettles. I am doing my exercises and they hurt a bit, but I think of the Navy Seals who say "pain is nothing but weakness leaving the body" and keep going.

 

The implant looks alright but feels quite stiff, I hope it will soften with time. Has anyone experience with this?

 

Chemo starts next week, six 3-week cycles so four months at least. I am borderline case for radiotherapy so will have to think about that. Anyone here who has experience with radiotherapy after reconstruction? 

Community Champion

Re: November 2018 Surgery...

daisy

 

Thats good you have changed to a different dressing it probably will take a couple of days for them to dry up, but get the district nurses to keep an eye on them xxx

Member

Re: November 2018 Surgery...

Hi Daisydi

🙈🙈 This is not what you need right now. So pleased you have it sorted onwards and upwards. Sending big Huggs xxx
Member

Re: November 2018 Surgery...

Hi yes got district nurses in and have changed to mepore but the blisters are already weeping and sore.  Having a shower is a very low priority at the moment.  Thank you

Community Champion

Re: November 2018 Surgery...

daisydi

 

that happened to me, it was the sticky part of the dressing as they put a waterproof one on,  Can you give the ward where you had your op a call and I am sure that they will be able to advise on what to do, it may mean that you have to go in there for them to change it to something else, I use mepore non waterproof, although it does mean that you can not have a shower as you cant get it wet.

 

Hope you get it sorted soon

 

xxx

Member

Re: November 2018 Surgery...

AND my skin has already blistered as I now seem to be allergic to surgical dressings.  WHAT ELSE

Member

Re: November 2018 Surgery...

Hi Daisydi

Don’t lose total confidence in your team wait until Tuesday. It may be worth writing a few questions you have for them do on paper so you remember to ask when you see them, I only say this because I just went numb didn’t here him say I would have to have chemo (think I just did not want to here that word). But I do have to have radiotherapy afterwards aswell😩. It’s been 2 days and I still cannot accept it, cannot sleep and eat properly. It’s just like waiting for the very first lot of results. It’s going to be a long 2 weeks before I see oncologist 🙈🙈. We will do this together Daisydi, you and me . Stay strong, sending big Huggs xxx
Member

Re: November 2018 Surgery...

Thanks for your replies.  Think the anaesthetic is wearing off and I am just coming to terms with what has happened.  I feel so lost and let down.What am I supposed to do now.  I was lied to and now I am expected to trust them with my life.

Member

Re: November 2018 Surgery...

Hi Daisy. Back in 2016 I had left mastectomy. When I got my path results back I unexpectedly had a bit of cancer on my sentinel node. I went back two weeks later and 9 more nodes were taken out which were all clear. Meanwhile my oncologist had sent a sample for the Onco dx test. Result was low and my onc decided I didn’t need either chemo or radio in spite of one positive node. Hope something gets sorted for you quickly. Debbie x

Community Champion

Re: November 2018 Surgery...

Daisy you may want to ask for advice re this in the Ask the Nurses section or ring the helpline ? I'm pretty sure that with only one affected node it is not necessarily a definite you will have a full clearance now .Could you ask about radiotherapy to your armpit as an alternative to chemo ? Sounds like you need a proper discussion about the options with your surgeon / Oncologist and weigh up the pros and cons .What a nightmare for you .
Member

Re: November 2018 Surgery...

So Nanna J you are having chemo with one positive node which I also had so now I dont feel so bad.  We can get through this together.  **bleep** though isnt it?

Member

Re: November 2018 Surgery...

DaisyDi - what an awful complicated mess, how horrible for you. I hope the surgical team were very apologetic, not really acceptable. I can't offer much advice but if you're getting results on Tues from the re-excision then maybe wait until then to see what the next steps are? I know it must be hard to not have your brain whirring through all the options especially if the issue of chemo is still hanging over you. But as you and your surgeon said maybe if you get clear margins then maybe the axillary clearance won't be necessary.

Sorry I can't offer any help or advice but just wanted to send hugs and good wishes. Let us know how it progresses and in the meantime focus on your recovery from the re-excision. x
Member

Re: November 2018 Surgery...

Sorry about your results Nanna J.  What a f ....ing mess this all is.  Let us know what you decide.  Hugs to you too ....xxxx

Member

Re: November 2018 Surgery...

So here goes - this is very complicated and I am trying to get my head around it.  Any suggestions would be very welcome.  Just got back from hospital.  Was meant to have reexcision as there were not clear margins and an axillary node clearance.  Woke up last night with no drain in situ and no surgery to axilla.  Very long story but due to pressures of work and an emergency the team omitted my axillary node clearance from the procedure as it wasnt written on the theatre board but was clearly in my preop consent. Surgeon has admitted that this was an error!   Did reexcision to try to get clear margins and also to remove a very large DCIS which I didnt know about.  Did know about 1 positive lymph node which is why they were doing the clearance. It was graded before this surgery as Stage II b grade 2.  The surgeon is fast tracking results for me for Tuesday and basically has said that he can either do an axillary node clearance as per original plan or go directly down the chemo road which I may possibly have had to have anyway.  Also that if there are not clear margins on the reexcision I will have to have mastectomy and axillary clearance anyway.  He also said that NICE were changing their guidelines to this effect anyway as doing a whole clearance with only 1 positive node would probably not be beneficial.  I am very confused.  I am very happy not to have heard axillary clearance as was very worried about lymphodema and other side effects but I am very unhappy about having to have chemo (which I may have had to have anyway) but we wont know if there are any more positive nodes unless I have them removed.  I just dont know what to do.  I suppose I may not have a choice anway if he has not got clear margins this time.  How can it be staged when we dont know how many lymph nodes are positive if any more are at all.  I feel so let down as this mistake was caused purely due to pressures of work.  I didnt go down to theatre until about 5 last night and they were all obviously very tired but that is no consolation to me but my surgeon said he may have done me a favour due to recent research on axillary clearance.  What a mess....

Member

Re: November 2018 Surgery...

Test results day :-

Tumour was larger than first expected 22mm - clear margins 🙌🙌. Oestrogen-positive, HER2- negative🙌🙌, Removed 3 nodes -2-negative 🙌 but 1 positive 😩. Consultant was reassuring. Went into meltdown when he told me I was to have chemotherapy, had already prepared myself for the radiotherapy and hormone therapy
My surgeon also came to see me and both of them where very pleased with surgery and wound healing plus my movement (only because I took painkillers before hand🙈). I understand more why it’s good to take someone with you as I went blank, but BCN had wrote everything down and my husband bless him was listening to every word. Now I have jointed the waiting club again another 2 weeks before I see oncologist.
Speedy recovery to you all. Sending big Huggs 💕💕💕
Member

Re: November 2018 Surgery...

right side was ductal, so I have one of each! Lymph nodes clear, so no further surgery, just chemo and radio. Also got my silicone boobs today along with a mastectomy bra. Not sure I will ever bother wearing them, but will give them a try. Quite happy being flat, but it does make my tummy stick out!

Member

Re: November 2018 Surgery...

Hi all

 

Just jumping on this thread as I had my single mx with immediate DIEP reconstruction last Weds and am at home recovering so looking for company ;-) 

 

Brief history - dx July with small IDC and DCIS so recommended WLE and SNB, which was done early Aug.  SNB came back clear but they didn't get clear margins so had re-excision end of Aug.  That didn't get clear margins either hence the mx.  Been a bit of a shock to the system.  

 

Have had a quick scan through the thread and realise everyone has had very different ops but most disappointed to hear that you don't feel the BCNs are there for you.  Mine has been a pillar of support - helped me through a lot of difficulties with my original surgeon and has been happy to see me and talk to me whenever I need.  I definitely feel she's there for me, not the surgeons and has actually challenged them a couple of times in meetings when she didn't think they were giving clear information.  She even came to the show and tell evening I went to so she could help if I had questions.  I think if you're not getting the personal support you should be then you should let your hospital PALS team know.  The BCN's role is as the patient liaison and support.  Or should be.  I'm sad that's not happening for everyone.

 

I did feel a bit abandoned when I was discharged after my 5 day hospital stay post-surgery as nobody gave me details about who to contact if there were problems etc but the dressings clinic more than made up for that today with the loveliest nurse who looked after me so gently and kindly and answered all my concerns. I'm living alone while recovering so it's nice to know I now have a point of contact if there's an out of hours emergency.

 

The DIEP op hit me much harder than I thought it was but at least i'm making baby steps to recovery.

 

Hope everyone has a good day xxx 

Member

Re: November 2018 Surgery...

Thank you so much.  I am terrified yet again.  Cant wait for it all to be over.  Its such a shame because I am back to normal after my first op now I have to do it all over again.  Good luck with your results.  I will get mine on 12th Dec xxx

Member

Re: November 2018 Surgery...

Hi Daisydi

Thinking of you 🤞all goes well for the 29th. I feel this is going to be a good day, I had a call this afternoon for me to see my surgeon 29th 11.30 with all my test results 😬😬. You stay strong, sending big Huggs 💕💕
Member

Re: November 2018 Surgery...

I was not in private room because of private insurance, it was to reduce risk of infection.

Member

Re: November 2018 Surgery...

Sorry www.breastcancercare.org.uk. Bloody phone keeps changing text. 🙈🙈
Member

Re: November 2018 Surgery...

Hi Floss62

I am so gutted you have been neglected at a time when you feel your lowest and most vulnerable. That’s where this forum comes in handy. I had the same op a week Wednesday just gone, so I can only help with what I have done. One week after surgery because hospital is far away I booked into my own surgery with the nurse to check wounds and change dressings this was scary (me being a drama queen ) but all was great wounds healing nicely. If you are not already get yourself a sports bra (if a little busty a good one) I did on line m & s fantastic, wear it day and night . Start exercises (day after surgery) straight away fantastic leaflet “exercises after breast cancer surgery “ from www.breastcancercate.org.uk on that note they do loads of leaflets get them they are fantastic for reference and reassurance. Your own Dr will proscribe any pain relief if you need it just call them you don’t have to visit surgery. Sorry for waffling on. On a final note you know your own body if you feel well get up and do it (within reason) and if you don’t SOD it , it can wait. I am still in pain but much better than it was, but they say that’s the healing. As my surgeon says “Baby Steps” . Keep us posted how you are getting on . Sending Massive Huggs xx💐🍷🍩💕💕💕xx
Member

Re: November 2018 Surgery...

Now I have always had contradictory instructions to that  - absolutely NO showering  until I remove the outer dressings and steristrips in 7 days time.

 

Does it depend on how the would was closed? Mine was stitches, though I know some who have been glued.

 

I was not not to drive for 2 weeks or lift anything heavy. Paracetomol and codeine are the drugs of choice for any pain and at the hint of redness, hardness, leaking, temp  etc to contact bcn/GP  or failing that go to A & E asap.

 

Also no heavy housework (gente dusting is OK?) or pushing shopping trolleys

 

Supportive bras day and night for 2 weeks  ( I could only manage croptop style for 2 months because of where the snb scar was)

 

My bcn does not visit, but rings up to check on me every so often  (I too had wire guided lumpectomy and SNB the first time) 

 

 

Member

Re: November 2018 Surgery...

keep the dressings on for 5 days. They are waterproof, so you can shower when you want. I found the best exercise was to put hands behind head with elbows pointing forward then open up by moving your elbows outwards until pointing in line with your shoulders.

Member

Re: November 2018 Surgery...

Hi Floss, I feel very well looked after but two months ago when I had day surgery for same as you, the nurse who was supposed to look after me was rude to me and my husband. So when I had to go in for bigger overnights surgery, I told my bc nurse I was afraid of her, it was that bad. I was in private room, which I liked but also made me feel vulnerable. The care team took that very seriously and made sure others took care of me. Have you seen a bc nurse at all? I wouldn't take it personally, they are just very, very busy and maybe a bit overworked. It is difficult to stand up for yourself when you don't feel well but you know, squeaky wheel gets the greeze. Take care.

Member

Re: November 2018 Surgery...

I had my surgery (wire guided wide excision lumpectomy and lymph node removal) on Thursday.
I didn’t and haven’t had any after care what so ever and ended up back at hospital for more dressing as my wounds were weeping everywhere last night.
I haven’t seen a BC nurse who was suppose to come and see me prior to discharge but didn’t and who was suppose to call me yesterday and didn’t.
No wound care advice no pain relief no advice about bras, showering or exercises, I’m feeling very low and neglected. Any one else feel as if they’ve been overlook or not important enough to be treated like everyone else for some reason ?? 😰
Member

Re: November 2018 Surgery...

Hi pastamissus,

 

That is good news about the nodes.

 How strange that they can't identify the tumour. Do keep us up to date. 

Best wishes for your continued recovery.

 

Best wishes

Jane xx

Member

Re: November 2018 Surgery...

only 2 of 22 nodes positive left side, and we already knew about them :-)

apparently pathology are having problems identifying the tumour in the right side, so have to go back in a week. Hopefully they might have found it by then. (How hard can it be? It was 4cm diameter and had a titanium marker in it!)

Member

Re: November 2018 Surgery...

Must be hard getting work done at both sides around the same time Pastamissus. Good luck tomorrow.

Member

Re: November 2018 Surgery...

had my right mastectomy with snb and left ANC 8 Nov. Get results tomorrow as to whether I need a right ANC. Already know I need radio and chemo. The 'gravel rash' feeling in my left arm is playing up, I am just hoping that after another 2 weeks it goes away again like it did last time. Still very little brain and very tired. But good arm movement, so that's something :-)

sorry, was just needing a bit of a moan

Member

Re: November 2018 Surgery...

Ta Daisydi. I am wearing sports bras too and scarves but thought padded post op bras would cover up the losidedness. May try a cheap 1 from Asda that I saw.
Shi were yours padded bras and did they help cover the lopsidedness?
I am taking biotin but its in my multivitamins anyway. Can get Jamaican black castor oil on Amazon I have been told.
Ta.x
Member

Re: November 2018 Surgery...

I had mastectomy with immediate implant reconstruction and they did not let me go home before removing both drains. Maybe because I love 2,5 hours drive away from the hospital. I don't think you should try to look after your pets with a drain in situ they can easily tangle up.

Member

Re: November 2018 Surgery...

They found some more potentially nasty cells so there were 3 margins not clear.  Also need to have axillary nodes cleared as one was positive from sentinel node biopsy.  Not looking forward to trying to look after my dogs and cats and myself with a drain in situ!

Member

Re: November 2018 Surgery...

Why does pert have to be cut again Daisydi? I feel bad for you.

Member

Re: November 2018 Surgery...

Im wearing sports bras, not that I'm sporty!  Also bought some nursing tops from Lidl which are very comfortable.  Not thinking too much about other bras for now.  Got one saggy and one pert.  Would quite like getting to know pert but she has to be cut again so not quite sure that she will remain my favourite.  Other people say you cant tell the difference but when I look down I certainly can.  If this was it I would be happy but it is not so Im sad!

Member

Re: November 2018 Surgery...

Daisydi how are you managing with bras as I feel lopsided? Ta.x
Member

Re: November 2018 Surgery...

Two months ago I had lumpectomy and 4 nodes removed, two of which were positive. There was a large area of dci s so the whole breast had to come out. I had auxiliary mode clearance, but not through new incision. The surgeon could take it out through the boob if that makes sense. I could do the exercises day after surgery, no restriction in arm movement at all so far. Just a numb armpit. So, not bad at all.

 

Member

Re: November 2018 Surgery...

I know Wahini I expect my results will come through just before Christmas.  As I am healing well from first op I can forget about it for a short while and then I come back down to earth with a huge bump.  Back to hospital today for another preop assessment.  I had one positive node and I am praying that that will be the only one but the second guessing is torture. Wish I could find a way to deal with this anxiety.  Did you have an axillary clearance and how are you finding the recovery?

Member

Re: November 2018 Surgery...

The waiting is hard Daisydi, there is no end to it, now I am waiting for pathology report which will define stage and further treatment.  I have lost my appetite, I think this is because of anxiety. I have also lost my taste for alcohol, which is s good thing I suppose.

Member

Re: November 2018 Surgery...

Hope all you ladies who have had surgery are recovering well.  I am still waiting for my second surgery on 29th.  The waiting is unbearable for me having already had surgery on 29th Oct.  Good luck to everyone

Member

Re: November 2018 Surgery...

Wahini

Pleased you are home and on the road of recovery. Stay strong and a speedy recovery . Sending big Huggs xxx💕💕