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…
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?
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 .
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.
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
AND my skin has already blistered as I now seem to be allergic to surgical dressings. WHAT ELSE
Hi Daisydi
?? This is not what you need right now. So pleased you have it sorted onwards and upwards. Sending big Huggs xxx
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?
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
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.
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
Wish you good luck!