IBC and Surgery fears!!!

suzilla

Hello Ladies! Hope you are all getting by with chemo with few side effects. I have been thinking alot which is something I shouldn't do cuz I sbegin to think negatively. Well I have two more rounds of taxol to go or maybe one if my neuropathy doesnt get too bad. Has anyone stopped taking taxol early due to neuropathy not getting worse so it wont interrupt your quality of life? How much of a difference will it make if I dont do the last taxol? I have completed all 4 rounds of A/C treatments and 2 taxol treatments..so far my neuropathy is ok i feel it from time to time but my right shoulder joint aches constantly, is this from chemo? Also, since I have a tendency to think way ahead sometimes.....and since surgery is just around the corner, I am seeking advice on some questions I have, so if any of you ladies have any information it is greatly appreciated.



Questions:



1. Do we have to write a will out for bilateral mastectomy with axilla lymph node dissection? This brings tears to me for so many reasons.



2. How painful is the post op? How long should healing take? Will I be able to have motion in my arms?



3. Should I ask my oncologist or surgeon for a physical therapist to increase healing in my arms and in case of lymphedema?





4. I hear beaing nauseous is a side effect from the anesthetics, what can I take prior to surgery is there a patch that prevents this?



5. How long does surgery take? How long will I be in the hospital?



6. Should I be scared?



7. What list of items should I take to the hospital? what types of clothes should I wear? Where can I get a post op camisole with pockets for drains?



8. Also any information on Radiation?



I have IBC, stage IIIb, estrogen and progesterone negative, cancer did not spread, but I do have the gene. so that's probably how I have this.



I await anyone whom can respond. Thank you all and God bless you all each and every day!! HUGS!! to all.

ibcmets

Suzilla,

There are a lot of answers on the surgery & radiation site of this board.  The only thing I did not do was radiation.  I had a bilateral mastectomy with reconstruction.  I was under for about 8 hours and in for 2 days.  The mastectomy took about 3 hours.  My surgeon said there would not be much pain with this surgery, but the reconstruction surgery would be painful. 

Your oncology office may be able to refer you to a place to get camis with pockets or you may find options on the surgical thread.  My plastic surgeon told me not to put my hands above my head for 2 weeks.  The worst part was being in the hospital due to all the noise level and interruptions.

My oncologist recommended that I write a will as I'm stage IV; but every adult should have one just in case even with no disease.

I took B6 & B12 for neuropathy while on taxotere.  I only had a little tingling in my fingers and I went through 8 treatments.

Hope I answered some of your questions.  Wishing you the best on your surgery.  I tried not to think about it, just got a little nervous the morning of surgery.

Terri

Kicks

My answers to your questions

1.  I've had a Will, Living Will and Advanced Directives on file for MANY years - only makes sense to me.  Hubby has a full POA from me as do I from him 'just in case'.  That's been going on for 37 yrs.  I review everything annually in my birth month.

2.  For ME - post op was not bad at all.  'Healing' is subjective.  a bit more than 4 weeks post surgery very shortly after the 2nd JP was taken out I started having problems with a seroma but that finally was gone too.  I had no problems with ROM immediately - maybe a 5% reduction but nothing that bothered me at all.  Remember we are all SO different

3   You should ask to be referred to a CERTIFIED Lymphedema Therapist immediately to get a 'baseline' and information.  Also ask for a PT (physical therapist).  Some times PTs are also CLT but most aren't.  Seeing an OT (Occupational Therapist) is also a good idea sometimes.  My CLT is an OT.

4.  Again - we are all different.  I have never had nausea from an anesthia but then I've only had it  (to different degrees) 8 times in my life - 2 C-sections/oral surgery/port implant/mast./colonoscopy/2 cataract surgeries).  I am very hard to keep 'knocked out' so have had some fairly high levels of drugs.

5.  Again, we are each different.  I don't know how long I was in the OR - didn't have my watch (LOL - anyone who knows me knows I am lost without my watch).   I was in the hospital overnight.  

6.  Scared - don't know what that means to you.  I was more worried about what Hubby and Son were going through sitting there waiting than what I was.  Hubby (at that time we had been married 3 yrs) had lost his Mom to Cervical Cancer when he was 9 so it had to be horrible for him to be sitting there while I was in surgery.  I think it was harder on Son to see what was going on with his Dad than knowing I was in surgery.  In fact he said something later to that line - I wasn't worried about you - you're a fighter and had greaat Drs - Dad was 9 yrs old again.   I put my faith in my Heavenly Father that what is to be will be.

7.  What I took was a Sudoku puzzle book, Son's lap top, my warm fuzzy robe (figured I just use a hospital gown overnight as if there is a problem it's a lot easier to deal with), wool socks (my feet freeze).    I had bought a big open front shirt as I had been advised to but left with my turtle neck and sweatshirt on that I had come in with on as that is my winter 'uniform' and had absolutely no problems getting them on.  I did not put my drains in camisole pockets as my surgeon said to hook them to pants as they would drain better using gracvity in addition to the vacuum.  I used a bandage pin (huge 'safety pin' used with horses) to hook them into the side belt loop of my jeans.

8.  Radiation was easy for me.  I started rads a week after 12th Taxol (I did 4 A/C then mod.rad.mast then 12 Taxol).  Taxol had totally EXHAUSTED me but with every day on rads I felt better.  I did burn VERY bad but it showedthe day after last rad and took months to heal BUT that is incredibly rare so I'm told.  Even knowing that I did burn so bad would I do it again - you betcha - I'd just start what finally healed it (Domobro soaks) sooner.

i had no neuropathy but as I said the EXHAUSTION on Taxol was complete and basically all I did was exist on the couch in fornt ot TV (Hubby took care of all home chores and Son did all horse/barn chores).  When I saw Dr. T before my 10th Taxol I complained a bit and he said that he would put in orders that I could quit at any tiime IF I wanted to - the 9 Taxol had probably done 85-90% of what 12 could do so it was up to me to decide.  I'd already done 9 so 3 more wasn't that bad to get all that they could do.  But we are each so different - THANKFULLY.

markcleveland

All of you ladies are awesome! Suzilla, don't be afraid. God has the wheel. Let him drive. My wife has triple neg, IDC and the cancer went flammatory after diagnosed. After the mastectomy, it spread to the skin just above the incision. We pray daily also. The best medicine is prayer and laughter. Keep us posted.