HER2 Support Group Forums - View Single Post - GIANT STICKERS/X marks for radiation to chest wall & supraclav nodes...

jml · 08-18-2008, 08:43 AM

Hi Sheila & Kathy& All~
Thanks for your responses.
I knew I could turn to all of you here for guidance & ofcourse kindness, compassion & support for my griping!
As a salty, 6+yr StageIV survivor, with 92 weeks of chemo, ???weeks of Herceptin under my belt, multiple surgeries, I was quite surpirsed by how much that visit with the RadOnc RATTLED me!
However, I called the RadOnc 1st thing this morning, cancelled my treatments, spoke w/the deptartment Administrator & explained my experience & the reason why I will not be having treatment there.
I was sure to explain that I wasn't calling just to complain, but because I believe it's important for patients to educate & advocate for themselves & must have a care team that contributes to that. And the attitude by the RadOnc team was that my questions were interrupting their job (one response to my question was "I'll draw you a picture later.")
As for how to treat these nodes...
I did have Taxol/Gemzar last Oct'07-Feb'08 & the supraclav nodes did resolve, but in July the same 2 started to look a little active again. Then the f/u PET last week showed slightly increased FDG uptake, so that's why we've decided to pursue Rads instead of returning to TG. At this point I am willing to roll the dice & give rads a try & honestly, I'm happy to extend the chemo break!
The 1st RadOnc was extremely adamant about radiating the chestwall too, but I was never comfortable with that plan, or w/his explanation why we should do that.
Now, after talking to my SurgOnc-who does have the whole of picture of my diagnosis/diease in mind, I'm pursuing a second opinion from a RadOnc.
I feel like I can move forward with more confidence & information & I thank all of you for that.
So, thanks again to all of you for your input & advice.

Keep the Faith~

jessica

08-18-2008, 08:43 AM	#7
jml Senior Member Join Date: Dec 2006 Posts: 415	thanks for the great advice (&support too!) Hi Sheila & Kathy& All~ Thanks for your responses. I knew I could turn to all of you here for guidance & ofcourse kindness, compassion & support for my griping! As a salty, 6+yr StageIV survivor, with 92 weeks of chemo, ???weeks of Herceptin under my belt, multiple surgeries, I was quite surpirsed by how much that visit with the RadOnc RATTLED me! However, I called the RadOnc 1st thing this morning, cancelled my treatments, spoke w/the deptartment Administrator & explained my experience & the reason why I will not be having treatment there. I was sure to explain that I wasn't calling just to complain, but because I believe it's important for patients to educate & advocate for themselves & must have a care team that contributes to that. And the attitude by the RadOnc team was that my questions were interrupting their job (one response to my question was "I'll draw you a picture later.") As for how to treat these nodes... I did have Taxol/Gemzar last Oct'07-Feb'08 & the supraclav nodes did resolve, but in July the same 2 started to look a little active again. Then the f/u PET last week showed slightly increased FDG uptake, so that's why we've decided to pursue Rads instead of returning to TG. At this point I am willing to roll the dice & give rads a try & honestly, I'm happy to extend the chemo break! The 1st RadOnc was extremely adamant about radiating the chestwall too, but I was never comfortable with that plan, or w/his explanation why we should do that. Now, after talking to my SurgOnc-who does have the whole of picture of my diagnosis/diease in mind, I'm pursuing a second opinion from a RadOnc. I feel like I can move forward with more confidence & information & I thank all of you for that. So, thanks again to all of you for your input & advice. Keep the Faith~ jessica