Dis Breast Cancer Survivors Part IV - GAGWTA

[Grace&Carolinesmom]

Early Happy Thanksgiving to ALL!!!

lmp - Hoping your scan finds the primary site and leads doctors to a positive plan of action. Big hugs and as always, sending prayers.....

 

[Pea-n-Me]

Happy Thanksgiving, everyone! Lots to be thankful for.

 

[snappy]

Happy thanksgiving!

 

[luvmarypoppins]

Well here is my latest update.
The pet scan did not show a primary site. There is cancer in vetebrae T12 and spleen?
Oncologist is sending out lesion biopsy for genetic testing. Says good no large masses were found.
I can get in and out of van so that’s good.
Now Dh has covid. After staying in the hotel.
Took 100 foot walk with breaks.
Surgeon check up. He said one of the screws was coming out. Could have happened during healing. WTH? He said there is the possibility of having to laparoscopically remove it if it’s causing me a lot of pain. Oh hooray. Another operation. See him Dec. 28
I actually got a real shower today.
Ds all done with Covid and back to work.
We’d. I see the radiation oncologist and then the following Wed.the pulmonologist.GAGWTA

 

[Pea-n-Me]

Well here is my latest update.
The pet scan did not show a primary site. There is cancer in vetebrae T12 and spleen?
Oncologist is sending out lesion biopsy for genetic testing. Says good no large masses were found.
I can get in and out of van so that’s good.
Now Dh has covid. After staying in the hotel.
Took 100 foot walk with breaks.
Surgeon check up. He said one of the screws was coming out. Could have happened during healing. WTH? He said there is the possibility of having to laparoscopically remove it if it’s causing me a lot of pain. Oh hooray. Another operation. See him Dec. 28
I actually got a real shower today.
Ds all done with Covid and back to work.
We’d. I see the radiation oncologist and then the following Wed.the pulmonologist.GAGWTA

I’d say that’s a mostly positive update, lmp! So glad to hear it. Minus the loose screw!
Stay well. Sending prayers for you.

 

[Dan Murphy]

Well here is my latest update.
The pet scan did not show a primary site. There is cancer in vetebrae T12 and spleen?
Oncologist is sending out lesion biopsy for genetic testing. Says good no large masses were found.
I can get in and out of van so that’s good.
Now Dh has covid. After staying in the hotel.
Took 100 foot walk with breaks.
Surgeon check up. He said one of the screws was coming out. Could have happened during healing. WTH? He said there is the possibility of having to laparoscopically remove it if it’s causing me a lot of pain. Oh hooray. Another operation. See him Dec. 28
I actually got a real shower today.
Ds all done with Covid and back to work.
We’d. I see the radiation oncologist and then the following Wed.the pulmonologist.GAGWTA

's LMP.

 

[Grace&Carolinesmom]

lmp - Sounds like some positive news overall. Isn't that first real shower glorious?!! AHhh......

 

[LuvOrlando]

BRCA2 and waiting for the Mammo results, I am now older than all my other family members who got related cancers so I feel like I am just waiting for the shoe to drop in some body part. In another week I get the special Pancreatic sonogram scope for the first time. Odd state of in between, I neither have it nor am I free - messes with my head when I think about it too much.

I don't want to take up any air from people struggling but I suppose I am more similar to the people here than I am to the people who are not positive. Some of you probably have children like me I would expect, in the in between.

 

[Grace&Carolinesmom]

BRCA2 and waiting for the Mammo results, I am now older than all my other family members who got related cancers so I feel like I am just waiting for the shoe to drop in some body part. In another week I get the special Pancreatic sonogram scope for the first time. Odd state of in between, I neither have it nor am I free - messes with my head when I think about it too much.

I don't want to take up any air from people struggling but I suppose I am more similar to the people here than I am to the people who are not positive. Some of you probably have children like me I would expect, in the in between.

I completely understand. It's similar to what we go through after having surgery and chemo/radiation. Always getting internal freak-outs after every mammogram, MRI, PET scan, etc. waiting for the results to see if cancer has returned. We try to go about our lives but every new pain or ache brings doubt.

 

[luvmarypoppins]

Hi peeps!
LuvOrlando - wishing you all the best with your testing
Grace&CarolinesMom - so true!
Pretty good visit to radiation oncologist
He calls me a black box? Says nothing is normal etc. lol
But he says there will be 5 radiation treatments to leg and 5 to spine. They can be combined for 1 week, 25 minutes total each session.
No hurry since we need to see if I need more knee surgery. Says my scoliosis makes things a little harder.
Need to get a shower chair, wheelchair etc. for home. I better be home for Christmas!
GAGWTA

 

[Grace&Carolinesmom]

lmp - I so hope you can be home BEFORE Christmas!!!! That's encouraging to have a shorter, combined radiation treatment schedule.

Is there a resource at the rehab center that can help facilitate the medical equipment you will need to return home??

 

[luvmarypoppins]

Guess who’s back in the hospital?
Why me of course!
Tuesday I will be having surgery to take the screw out. They said most likely it will be a fast operation unless they see things inside.
I am being weaned off my blood thinners now
Ds3 got his friend to get me a great room on the 19th floor bone marrow transplant unit. Not everyone is here for that but it’s the oncology floor
Private room, couch, mini fridge, killer view etc.
Praying they won’t send me back to rehab
GAGWTA

 

[Grace&Carolinesmom]

lmp - Sending prayers for a successful surgery and a speedy recovery. It's good to have connections to acquire a hospital room with more comforts and a great view.

 

[LuvOrlando]

OK, so mammogram finally came back ok & today I am having the BRCA2 related sonogram guided endoscopy along with a regular colonoscopy. Apparently the Pancreas kind is highly specialized because none of the everyday GI Dr's are trained in it soooo it's nerve wracking.

I'm just sharing here because I imagine there are a lot of people whose kids might be BRCA and could be guided to my path. Actually, I imagine that BRCA people who have had breast cancer might be guided to the Pancreatic, too - not really sure since I am the only person I know doing this.

I am fairly well versed and have never heard a peep about pancreatic screening, so here I am trying to spread awareness to the pool of people who could be helped. Not quite sure what will happen if something isn't right in the scoping but off I go into the unknown.

My mother and aunt had breast and my aunts son had pancreatic, he and I have the same exact mutation - breast runs in the family with more extended family as well.

Here goes nothin'

 

[Pea-n-Me]

OK, so mammogram finally came back ok & today I am having the BRCA2 related sonogram guided endoscopy along with a regular colonoscopy. Apparently the Pancreas kind is highly specialized because none of the everyday GI Dr's are trained in it soooo it's nerve wracking.

I'm just sharing here because I imagine there are a lot of people whose kids might be BRCA and could be guided to my path. Actually, I imagine that BRCA people who have had breast cancer might be guided to the Pancreatic, too - not really sure since I am the only person I know doing this.

I am fairly well versed and have never heard a peep about pancreatic screening, so here I am trying to spread awareness to the pool of people who could be helped. Not quite sure what will happen if something isn't right in the scoping but off I go into the unknown.

My mother and aunt had breast and my aunts son had pancreatic, he and I have the same exact mutation - breast runs in the family with more extended family as well.

Here goes nothin'

Thanks for sharing, luv! Do you have an article that explains it that you could share? Good luck with the procedure.

Sending good thoughts to lmp, and to everyone here.

 

[luvmarypoppins]

Luv Orlando - Hope all your testing and results turned out well
Pea-n-Me - Glad you got to go to Disney for the holidays but sorry you have to deal with being sick. Hope you feel better soon!
Big announcement…..
After 45 days, 2 surgeries, one loose screw, 3 weeks in the hospital and 3 weeks in rehab…I am going home tomorrow!!

 

[Pea-n-Me]

Luv Orlando - Hope all your testing and results turned out well
Pea-n-Me - Glad you got to go to Disney for the holidays but sorry you have to deal with being sick. Hope you feel better soon!
Big announcement…..
After 45 days, 2 surgeries, one loose screw, 3 weeks in the hospital and 3 weeks in rehab…I am going home tomorrow!!

That’s great news! You must’ve gotten wonderful medical care!

 

[Grace&Carolinesmom]

lmp - So happy you can go home!! "Click your heels together 3 times and say --There's no place like home.....there's no place like home....there's no place like home...."

 

[luvmarypoppins]

Happy almost New Year everyone!
Wishing you all a bright, beautiful and blessed 2024 New Year!
Went to the orthopedic surgeon yesterday. He says my leg is healing well. He wants me to see the orthopedic oncology surgeon. This guy was actually supposed to operate on me but I got bumped due to other cases. He has already been consulted and reviewed my case. My surgeon said he’s the expert. Hopefully he will give the go ahead for the radiation.
I still always feel weak and tired. I’m dreading what it will be like with the radiation.
So far for Jan. besides pt home visits, I have 3 Dr. visits, 1 telehealth visit and 1 blood test.
My ins. company paid for a transport wheelchair which is great for us! Fits right in the van.
Now we have to get the cancer genetic testing bill straightened out. 7,700! Omg! The testing company coded it wrong, it’s out of network, the insurance company wants a letter from the oncologist stating the medical necessity. All in a day lol.
GAGWTA

 

[Grace&Carolinesmom]

lmp - Thanks for the update. Sounds like everything is being handled by your medical team. Good luck with the coding issue. I set aside one day every month (sometimes 2 days) to call and bee-yotch about incorrect/missing billing. It's mostly from one particular medical group, but it's SO frustrating. I called 1-2 times a month, for several bills of DH's, from Nov 22 - well.....current....and their incompetence has currently led to 2 bills being written off because it never got billed to our secondary insurance and the timely filling mandate expired. Sigh..... Also still calling about one of DD's bills that has about 45 days until the mandate expires.