***Surgery Chat***

Great thread!

I had my mastectomy on 4th December, level one clearance.  Have healed well & my movement is good, exercises are so important.  Drain was just a bit of a hindrance but certainly proved I was worrying about nothing.

Unfortunately pesky cells been found in two nodes, as these resisted 8 sessions of neo-chemotherapy, unlike the lump, I am back in on 29th January for next level removal. 

Like the majority who have been through surgery say, worrying does not solve anything, yes I am irritated about having to go for more surgery but I can’t change this! 

Debs x 

Hello everyone, I am coming at this from a slightly different angle. I started off by having a left mastectomy on Dec 5th and will be returning to see the surgeon on Jan 9th to know what happens next. So I started with surgery and now have to see if any further treatment is required. I am really hoping not. I was originally told I had a tiny tumour (6mm) but then they found precancerous cells in another zone and could not save my breast. The decision seemed quite radical for something so tiny. If I now have to go through radiotherapy and chemo for something quite so tiny, I am fairly sure I am going to struggle to accept it. If they have to reoperate to remove more lymph nodes, it will be a blow too as I am now feeling more myself after my sentinelle lymph node removal. It has taken me 4 weeks to get to where I am now and the thought of having to start over is quite distressing. The lymph node caused me more jip than the mastectomy itself. Some soreness and very tired. It took me a while to understand where the discomfort was coming from. It was all the cut nerve endings, so I believe. And also having fluid sloshing around didn’t help. Playing the waiting game is really tough, isn’t it ?

Hi Jojodot, I know I have been lucky and coped pretty well with the docataxel, can't really complain at all. You raise a couple of points about reconstruction I hadn't thought of.....I have pretty much decided not to have any reconstruction but I hadn't thought about how it would affect any future issues. One of the questions on my list is; do you still have to examine the mastectomy side to check for lumps in the future or is there no tissue left for anything new to grow?

I have also seen posts from a few ladies who have one op and then have to go back for further surgery, depending on what is found. I can understand this must be disheartening and I hope that my surgeon will know how many lymph nodes need to come out so that I am only there once! FroggyinFrance yes the waiting is the hardest part, but if you do have to have further treatment, you just have to remember they are doing everything necessary to get the best outcome for you, so hang in there!

Thanks everyone for sharing experiences

Hi all,

Quick update on day 2 after my op (mastectomy and axillary node clearance).  First of all, thanks to all on the chemo thread (particularly Northerner) who recommended buying a V-pillow.  I am finding it difficult to get comfortable when I am lying or sitting, mostly due I think to the drain tube and to the impact of the ANC, which my BCN said would cause quite a lot of pain and immobility.  The V-pillow is great, as it enabled me to be supported on my back and to sleep quite well last night.  The heart-shaped pillow given to me by the BCN is good too, but obviously not as supportive for sleeping as the V-pillow.  I am finding - strangely - that at the moment sitting on hard chairs is more comfortable than on a soft sofa or chair (which I think “kinks” my drain tubes a bit). 

Today I was able to get up and dressed as normal (although the hospital said no showering until the drain is out) and to move around the house quite easily, although slowly as some movements such as twisting or bending are painful.  I am learning to use my leg muscles as a propellant when getting up from a seat, rather then my chest/arm ones!  My wound is draining red fluid as they said it would, but with only half the drainage of the first day.  I have a very large drain bottle attached, as an ANC site is apparently liable to produce a lot of fluid.  I am finding the drain a nuisance, but am getting used to it.  I have started to do the arm exercises, which give a strange sensation on the operated side, as my upper arm is numb due to the ANC.  This sensation may possibly be permanent, according to the surgeon, but time will tell.  I am trying to keep mobile and have had a little walk outside, which was nice (although I’m not too keen to go out where I might meet people I don’t know, as my big drain bottle and tubing look a bit gross!)

My op has obviously been a relatively radical one (total mastectomy and total ANC) in which everything on the diseased side has been taken away.  I sympathise totally with those on the thread who have had a less invasive operation, such as a lumpectomy or sentinel node removal, and might possibly have to go back for another op.  I didn’t have the choice due to the location and long thin shape of the tumour, but I can imagine it would be difficult to have to plan for another surgery soon after the first.  I didn’t find going in for the surgery itself nearly as bad as I had imagined, but I am still very relieved it is over. I hope that everyone who is waiting for histology results gets good news, and does not need another op.

So far my “flat” unreconstructed side has not troubled me at all in terms of appearance, and I have not yet bothered to try out the softie prosthesis.  I am wearing button-through tops with a pattern, and the difference between the two sides is not really noticeable, as I didn’t have a huge chest in the first place.  Once the drain tube is out, I will try out my post-surgery bras and prosthesis.  

Thanks so much for the sharing of experiences, which is really useful.

Blackcat xx

Hi West End Girl, I was diagnosed with DCIS high grade early December. They have told me I have to have a mastectomy due to the spread of the DCIS. Its over 110mm from back to front so a lumpectomy wouldn't cover it. If they remove all the breast then it won't return. I have to have the sentinel nodes removed in a separate op which is frustrating ad lots of others have had theirs removed at the same time, They will be able to tell if it has been invasive when they look at them. They're taking 3 or 4 as far as I know.

I have opted for a DIEP flap immediate reconstruction. My first op is 7/8th Jan. The mastectomy/rconstruction should be soon after that hopefully. 

Warm wishes

Sam x 

Hi Blackcat20 

Glad the V pillow came in handy . I found the heart cushion invaluable as a passenger in car to cushion seat belt ,or when visiting others 

Good that you comfortable with wound area you'll be surprised how little your bra and softie affects the surgery site once the drain out . 

The best laugh I had with drain was going to loo . Not knowing which way to turn If bottle on floor so ended up wrapped in tube lol. Mine was in 5 nights but had sentinel node not anc .

take care I know you in hurry for back to work but I would say at least 6weeks for recovery plus listen to docs .

margaret x

Hi Northerner

Yes, I’ve had a few comical experiences with the drain bottle in the loo, and also one where the drain tube hooked itself onto a roll of kitchen towel, when then unravelled across the kitchen floor to be pounced upon by my two cats.  I will be so glad when the drain is out.  The drainage from today is half that of yesterday, so it is certainly decreasing.

Thanks also for the good advice about not rushing back to work.  I would like to get back if possible in February, but I was thinking about towards the middle/end of the month so that I could have the six weeks to recover.  I have appointments with the surgeon and oncologist in the week beginning 23 January, in addition to my first herceptin/perjeta infusion, so I will see what they recommend then.  

I hope that you are emerging from the last of the side effects of EC, and that your infected toenail is getting better.  

Blackcat xx

Hi Blackcat20 still feeling tired but been in Cumbria since the 30th so walking more . Onco thinks about 8weeks to get EC out of system .So will be able to get to chiropodist for treatment . No infection but both big toe nails looking like coming off . 

Herceptin injection start on Wedsday 18x three weekly . Next Bisphosphonate infusion due May . So hope to feel more normal by mid Feb . 

We both know the rules by now don't we ,listen to your body and then the team .We getting there 

Margaret x

Thanks Blackcat20 it's been really helpful to read all the details since your op. I think mine will be very similar if not the same as yours, just not sure yet on node clearance. I think it could have been overwhelming if the surgeon went through all this with me on Wednesday without me having an inkling of what was coming. I also feel more prepared with what questions I should ask. I didn't expect you would be able to look at the wound so soon, I imagined it would be heavily bandaged for a few days.

Can I just ask a couple of questions.....Does the ANC mean a total clearance ie. you have no lymph nodes at all left in that area? Do you have any results to wait for now following the surgery or have they taken everything that would need taking in the 1 operation?

Hope you're feeling better each day!

Thank you

xx

Hi West End Girl

The ANC does mean a total node clearance, so I now don’t have any lymph nodes at all on the side of the operated armpit.  At diagnosis I had one lymph node affected, which my latest MRI showed was subsequently cleared of cancer cells by the chemo, but my oncologist advised that an ANC was still appropriate to get the best outcome and to avoid further surgeries (which I was keen to do).  I have been told that I will get the histology results from the surgery when I have my post-op check in a couple of weeks, but there is nothing left on my affected side to remove surgically as I have had a total mastectomy and total ANC.  The only follow-up treatment planned at the moment is the continuation of the herceptin/perjeta infusions, which I start again on 27 January.  

I am slightly concerned about the lack of lymph nodes and the risk of lymphoedema which this presents, but I have been given leaflets and advice from my BCN about how to take care of the affected arm (plus a card to be given to my GP which explains that I have had an ANC, and lists the protocol for the antibiotics to be used if I get an infection in that arm/hand).  I have been told to wear gloves for gardening, and to watch out for scratches etc which might become infected.  I was told by my surgeon that my armpit and the underside of the top of my arm might end up permanently numb due to the ANC, but today the numbness is going and so I guess I will still end up with some sensation there. The rest of my arm feels normal and the muscles have not been affected.   

Today I have been feeling pretty OK and have been doing most of my usual household activities as normal (putting the washing on, cooking, looking after my pets and plants etc).  I am moving around slowly as the drain bottle is filling up and is cumbersome, and also to make sure that I am not doing anything to hurt my right arm or strain the wound.  The drain is draining about half as much as each day progresses, so hopefully I may have it out in the next couple of days (it needs to be at 50ml or less to have it removed).  The tubes seem to twist a bit when I get in/out of bed and cause pain, so I will be glad to get the drain out.  Apart from that, I don’t really have much pain at all. I am doing the prescribed arm exercises, which until the drain comes out are just shoulder hunches and rolls. 

The surgery was definitely not as daunting as I had expected, particularly on the day itself as the medical teams are obviously geared up to making people feel comfortable and to giving you no time to get anxious.  As soon as I arrived at the admissions ward at 7.30am, I was told that I was first on the list and that I would have a succession of individual appointments (with the surgeon, anaesthetist, theatre nurse and an HCA who gave me a gown)  for the next 1.5 hours before going to theatre at 9am.  I was so busy with all the appointments that I literally had no time to think about the operation, and I didn’t need a sedative or anything to make me feel relaxed.  I walked down to the operating theatre feeling quite chilled out, in fact, which is definitely not what I had anticipated.  I think I was also just relieved to finally be having the operation, having known since diagnosis in July that it would be necessary.

I hope that your meeting with the surgeon goes well, and that you get answers to all your questions.  It’s hard not knowing exactly what to do when you are given choices, but I’m sure after the meeting you will have a good idea of what is best for you.  Take care.

Blackcat xx