Chest Wall Recurrence--Feedback anyone?

Brenda, I don't have experience with chest wall mets.... just wanted to lend a shoulder to lean on as you decide how to go forward. 

Paula 

Brenda, I'm not sure what state you are in, but can you collect short term disability for 6 months?  After not working for six months you can get Social Security disability since you are stage 4 BC.  Being able to focus on your body might add so much to your quality of life and survival.  Certainly something to consider. 

Carol

Hi Brenda,

Chest wall pain?  yea, but most of its under the R arm where 1st mast done, and down all the ribs on that side, as they had to scrape all the cancer on all those ribs...all I can think of and call it is that they used a "potato peeler"..LOL

If the pain in chest is from where i had a portacath, which is in there no more, as it broke off (the tubing) later i found that out, but complained about it from day one, but went thru chemo and blood etc from it..long ugly story, but it has left me with pains in chest/heart (as when the tube broke off it fell directly into top valve of heart, but no one would listen to me..and now we all wonder where the chemo went..this port thing ended up a life/death thing had i cought, sneezed, tripped, coughed, laughed etc, and being even prior to BC I always took daily naps or just rested, and dr's said if i had moved while resting I could of died and no one would know about it as i would of bled to death and no one would of known why, cant lay on the pain in chest is spooky, as i think im having a heart attack...so far nope, thank G*d.

One thing is kind of "funny to me" as i bruise EXTREMELY easy and Im very lopsided even w/cane I was trying to do laundry and had all the clean dry laundry in left arm nice L:& ready to fold, when a sock fell, so I put my cane to the side, and i have a wrought iron hand rail on that step to go from garage to kitchen, and when i bent down  oy vey I thought i was gonna die, as my chest wall on R side, port was on left (left a scar) but when i bent, dang sock should of just laid there, but oh no, i gotta do everything now, and when i bent my chest bent down deep into the railing of wrought iron, and it was the end area (like 1 1/2"x1 1/2") went deep deep into my chest..that was like 6-8 months ago..do u know that i hit so hard its not a scar, but a huge dent about 3"X 1", and its like straight across the chest from where port was..so instead of 2 boobs I have 2 indentations, adn they dont make bras like that..lol  had to add a bit of humor.

I sure hope your pain and mine and everyone else's pains go away.  Isnt it amazing how before BC normnally most of us were in half way OK condition, and now were like we seem to add 100 to our ages, and hobble around like an ole wounded cowboy.

Hugs

Ter

Hi Brenda and sorry you're going thru this again.  Not sure if you remember my story so here it goes: rt mast Jan 07 for node clear trip neg ILC then chem x 6months.  good till aug 08 when SOB landed me in the ER and ct found large mediastinal mass.  my world changed forever.  I wanted surgery to remove it but both drs. said no way since where it was located in the chest too high risk for damage to critical vessels as well as very high risk of creating more spread of the cancer cells.

Now onto 33 IMRT rads to chest --this type beam shapes to the mass to prevent radiation damage to other areas as much as possible.  But where my mass was it still got some of both lungs and part of heart.  Then onto chemo where I've been on since Nov 08.

Good news, with each and every ct chest mass has showed more shrinkage and I've been off home oxygen now for about 2 months.  Yes I ended up with radiation pneumonitis 3 months after last rads but that parts over now.

My onc said I went from stage II to stage IV with this chest mass as it was pushing its way ou thru my chest (you could see a small lump on my chest if I wore a t-shirt) and encouraged me to begin the ssdi process since I'm alone and couldn't miss getting some type of income when my short term disab. ran out and if I couldn't return to work yet.  Thank goodness I did it since with the rads pneum. I havent' returned to work yet.  anyway, I was approved within 2 months I think and benefits started in March.  If you tell soc. sec. you are stage IV they will expedite your claim but you will still have the 6 month wait to get first check and you have to be NOT WORKING at the time you apply. 

The radiation for me was very fatiguing, more so since it was in the center of my chest and the rads dr. said he was "hitting me hard" to get this mass under control. 

I wish you the very best and just know you can get thru this. You are blessed to have such a supportive spouse.

Feel free to pm me anytime.

Hugs,

Hi Brendatrue

 Am doing some research on chest wall recurrence. My daughter has just been diagonsed with her 3rd recurrence since her original DX in 2005.

 So far it continues to recurr in the skin area first. CT scans this week will tell us if it has become metatastic.

In Chemo she has received: TAC, Carboplatin, Navelbine and 30 rounds of rads. This last time she received 6 rounds of Abraxane + Avastin. she took Tamoxifen until the last recurrence in 2008.

We are currently looking into Photodymanic Therapy as a less invasive therapy and less toxic, and is showing promise in chest wall recurrences in the skin. since the previous chemo combos and radiation gave her only 15 months between the 1st and 2nd recurrences, and only 3 months since chemo to the present 3rd recurrence, we believe it is time to try something not as systemic.

Hope you are able to  resolve the disability issue. The SS papers I printed out tonight say:

By law, Social Security has a very strict definition of disability. To be found disabled:

1. You must be unable to do any substantial work because of your medical condition, and

2. Your medical condition(s) must have lasted or be expected to last 1 year,

3. Or be expected to result in your death.

I understand Onc's and the govt not wanting to give a free ride to everyone, but come on, my daughter could hardly get around during her 2nd set of chemo regimines. This last one she was able to work a little, but was still pretty sick. We are applying for SSI disability because she knows that this 4th time, she just doesn't have the energy to do it all.

 Hugs

Bobbi

Mel's Mom