IBC and surgery!!!!

hello lovely sisters,

suzilla as bon & terri have already said its a pretty straight forward operation. i do suggest take your favourite snugly pillow.

my experience was much better than i could have ever anticipated.

was booked for surgery late August but i was getting very distressed as my tumor felt like it was growing by the second.  so my mother and i marched into hospital and asked to see the bs and demanded that they take it off now..that day.  luckily my bs was on my side as he was the only one that was listening to me when i was trying to tell my then onc  that chemo wasnt working after the 4th dose which she wouldnt listen to me and continued the same treatment to the end  of the 6th dose.

the bs that day had a look and agreed that it was growing very rapidly and admitted me there and then and 10 hours later removed a 10cm tumor.

being so big i could not envisage what was going to happen but much to my delight woke after operation and was feeling fine, no pain whatsoever, was then led back to ward where i sat up and said to myself, here goes and proceeded to have a look.

wow to my amazement i looked down and all i could see what i thought i could see was this miniature hump that looked like a breast and i kept looking and smiling and looking and smiling, confused with this little hump that to me looked like a perfect little tittie.

the nurse asked why i was so happy and i said ive still got a breast, she laughed and had a look and said that is your pec muscle, id always done heaps of weights.

my frame is quite lean and the skin obviously because it was a huge tumor was stretched so tight and the scar line went from the chest wall of the good breast right round and under my arm.. the bs had done a brilliant job, i didnt have any bandages on just a fine tape along the scar line.  within an hour after taking a anti nausea tablet i was up and ready to go.  was discharged the next day, dont know why but was not given any antibiotics and was sent home and told that the silver chain will call at home to check drains and to see if any infection.

not recommending but i was driving the first day out, had been given this wonderful cotton bag made by volunteers in the breast clinic which you place on your shoulder and pop the drains in the bag and no one was the wiser that the drains were there.

four days later home nurses removed the drains, started doing my stretching and really pushing through any pain barrier, next week i was down the park stretching as you can see in my avatar thats me down the park one week later stretching.  the only side effects was cording,  very tight all through the arm, they had  taken 24 nodes out. being consistent with my walking & stretching this severe cording eased tremendously.  my arm is still tight but nearly there and will continue with exercises.

my tips would be drink gallons of water, do the exercises they tell you, cut out salt completely because that will retain fluid and lymphoma loves to retain flud.

a couple of months down the tract im completely fine and gearing up to have reconstruction in about 8 months and as i too had radiation they have strongly advised not to have implants but im going to go with the implants and if they dont work will take them out and have flap as advised.

funny thing was i had just been overseas and had implants put in 4 months prior to my diagnosis and that was much more painful them the mastectomy.

im waiting on by brca results and regardless if im positive or not ive asked to have my good breast removed and at the same time want ovaries removed too.  now what ive learnt from our fellow sisters, love you girls, is that i should have been recommended to have the other non cancerous breast removed at the same time with my prognosis.  not worried at all, its just a nuisance to have to go through it again.

hopefully in about 8 months will have both reconstructed.

whatever your concerns are suzilla we are here for you and you will be ok.

for some its too upsetting the thought of losing their breasts, i thought i would never mentally handle losing a breast before i was diagnosed and there i was begging them to take it off before scheduled time.

and that second it was off i was so relieved and these days we are so much luckier than a lot of our sisters many years ago that were not even offered reconstruction., like my mother who is a 20 year survior.

make sure if possible you get one of the bags to carry your drains in and then you wont have them pulling down and that is unbearable and frustrating.

best wishes and hugs.

bon i did pretty much the same with soap, i used a natural body soap for everything, hair also, think less is more to soaps creams perfumes whilst going through treatment.

i would never let my scar area get wet at all and even during rads would only wipe down with no chemical baby wipes.

and bon can you please explain about the mammary gland, remember you telling me this once and i did mention it to the bs the day i was being operated but nothing eventuated.

xx

thx bon - thx  for the pic, lovely to see it all there exactly as... i did have internal mammary done. 

about the measurements and why ibc are so big makes sense but i could actually feel the tumor is was rock hard from one side to the other and when i laid on my side i could feel the hardness starting to push against my other non cancerous breast, it had grown past the mammary nodes.

now i feel relieved that i did have mammary nodes included in the field.

bon ive been told different things regarding what stage i am, i say conveniently im stage 3b but one of the oncs said i was stage 4 because of the upraclavicular lymph node & chest nodes (which i now understand is the mammary nodes, correct?)   which came back after mastectomy.

after finishing radiation and put on new chemo xeloda and navalbine my recent follow up this week with scan results  showed a complete response for the upraclavicular lymph node and 80% shrinkage for internal mammary lymph nodes/ chest nodes.  had complete response to  upraclavicular node during radiation as that was one of the fields. 

now come to think of it i was told by radiologist and onc that the radiation could not  reach the internal chest nodes which i know believe are the mammary nodes & was told that there was a different type of radiation which was a lot more complex, internal radiation.  dangerous because the nodes on chest were close to heart lung and could not be reached with external radiation..

so now im not sure, are chest and mammary nodes the same?

was yours radiation internal or external?

oh bon you must get so tired repeating yourself a zillion times for everyone's cancer is so different.

thx lovely

xx

hi suzilla ((hugs)) - so nice to hear the love in your post from your dh and children.

the mastectomy  for me was the easiest bit of the journey..
as terri asked are you having reconstruction also, i didnt and could move my arms freely across and sideways but couldnt lift my arm up above my head until i started do the exercises recommended and before i knew it was completely back to normal.  exercising is so very important as is drinking lots of water.

yes you will more than likely be able to write, its lifting above your head is where you will be restricted at first. as your having both sides nodes removed you will probably need help to start but do the exercises to get movement going and in a short time you will be a lot more agile.

just make sure you wear something with buttons, movement above head will be restricted and if you can get a cloth bag with long straps to put on your shoulders to keep the drains in.  this bag is a must, i was given one at the hospital but its easy enough to find, you know the sort i mean, the one from hippy indian surfy shops,  sort of.


try not to stress it will be over and done with and you will be on the mend before you know it.

easy to say!

best wishes

xx

Bon,

I sure wish I had the figure of the 2nd picture you posted, the one with polk dot pants.  I surely did not look like that.

Terri

suzilla,

Like others have said the surgery was the easiest portion of this trip.  I did not have reconstruction at the time of MX, my surgeon and Onc both actively discouraged it becasue of the IBC DX. , 30 nodes removed.  Due to the aggressive nature they wanted the skin out n the open for a year or so , that way they could catch any potential reoccurances. Other docs do it differently.  I am almost a year out from surgery (Feb 16th) and have my range of motion bcak aobut 95%

Yes the drains are a nuisance.  I got the camisole fro my hospital prior to discahrge, but I know all hosptials are different.  There a  numbeer of ways to manage the drains and if you check the surgery thread there are lots of really good recommendations.  I had help with getting in and out of the  shower and getting dressed the first week.  Just the whole manuvering the drains etc was annoying and a bit of juggling.   I could take care of most everything else myself, but no lifting anything heavy, above 5 lbs.  Again go to the surgery threads lots of good ideas.  Like if you have a dog, place food in small bags enough for a couiple of weeks, then you don't have to lift the heavy bag.

I had a small pillow for the ride home to put between the surgery site and the seat belt, again from the surgery site, and it was one of the best ideas offerred.  I used it for several weeks.  Pain was minimal, switched from percocet to advil once I was home.  Percocet made me really sick.  I was able to feel well emough to leave the hosue for a few hours a few days after the surgery.  A friend drove and we jsut went shopping for an hour or so.  Just needed a change of scenery.  Do the excercises the hospital gives you and the ones listed above.  Again a huge help. 

I too was terrified and not sure if I was going to be able to leave the hosue the AM of the surgery, more emotional issues than the physical. You can do this.  Also if you haven't, find the thread for others having surgery in January.  This was a tremendous support.   We were from all over the world, but all having surgery in February of 2012.  Talking to each other prior and after. 

A year out I feel well , have not and will not be having reconstruction.  I keep saying to folks, elective surgery is not in my future.  I have had enough.  I am adjusting to being "lopsided" sometimes I wear the prostetic and sometimes I don't  .  

Be well and keep us posted.

Nel