Surgery back on the table for my sister

[cat127]

the results of my sister's PET showed no new sites, no activity in the lymph nodes, but residual activity in the tumor. i knew a CR was a long shot, but it didn't hurt to hope! med onc then said - back to the surgeon and if he is on the fence about operating, you need to press him to tell you why! plain and simple, both med and rad onc were always "if surgery is an option, take it". we were certainly happy to have the nodes not light up and to have nothing new seen.

i tried to subtly let my sister know that it wasn't going to be black and white, that if the surgeon felt that she was a candidate, then we would have a lot of new information to process, things for me to explain to her, before she feels she knows enough to make a big decision.

well i think she and my b-i-l were expecting the surgeon to be as gung ho as the two oncs, and he was not. in reality, i don't think he was as negative as they thought he was, but he wasn't the same as the oncs were. which i would not expect him to be and i think showed me he is a very circumspect guy and wants her to have all the info she needs to decide.

surgery is back on the table, with the caveat that while in the OR they'd biopsy the nodes and if signs of cancer in them they'd stop and with the comment that he is less comfortable with the location of the tumor than he is with the state of the nodes, and it is possible when he gets in there that he won't be able to get clean margins with a 'lobotomy' as my sister calls it, and he won't do a pneumonectomy. so then again he'd stop and close if the lobectomy won't do it.

my sister was quite distraught after the meeting and much more unsure of what to do. i think she may have more questions as it sinks in, i did answer the few she had later last night. i've told her to carry a notebook and write down the thoughts and questions and anything she wants clarified and i can answer them or i can get a co-worker to answer them for me, but i'll get her an answer. i called the med onc and left a voicemail for him to call me and to ask him if i can bring her back to him to talk to him now that she feels so uncertain after the surgeon. i offered to find her a second opinion surgeon too, though again i think she's got a great one and was thrilled to see that dr west agreed with me when i posted on his board.

i think i may send her here, so far she's been comfortable not knowing, as our brother calls it, the 'nuts and bolts' of things, and letting me be the one who knows things and tells her when she asks. she has had no desire to get on the internet yet and see what is out there. but i think coming here and hearing from folks who have had a lobectomy could help her, though most here who have seem to have been earlier stage, but still, you are the folks who can talk about the recovery period. as i told her, i know a heck of a lot about drugs, a bit about radiation, and not much about surgery.

if i do get her online, i'll be sure to post to let those of you out there who can give her some input know. but thanks for just letting me sound off a bit too.

[recce101]

Your sister is certainly fortunate to have you and your expertise on her side, and I hope she does join the group as you suggested. I've also been following your exchange with Dr. West on onctalk.com.

Best wishes and Aloha,

Ned

[Don M]

Well, even with those caveats I wold jump at the chance of a cure from surgery. I would be happy to post my experience from my 2 thoracotomies for your sister to read.

You know cyberknife surgery could also kill the residual disease with less risk and all, but there would be no way to find out for sure about the lymph nodes or check the margins.

Don M

[Patti B]

Cat -

I personally have no new information to give you. We have spoken on onctalk and I just want to wish you and your sister a great outcome on this and to once again congratulate on being such a wonderful advocate for her.

Hugs - Patti B.

[carolhg]

I went through the same thing with my surgeon. What a rollercoater ride!!! He had me to have 6 weeks of weekly chemo and daily radiation. He said after that time he would "reevaluate". After I completed my treatment he sent me for another PET scan. The scan showed the same two lymph nodes to light up in my chest that lit up on the first PET scan, a tumor in my left lung lit up on this second scan but did not light up on the first scan. My oncologist and radiologist both felt that it was not cancer but my surgeon insisted that I have a biopsy of the nodule before he would do surgery. I did and the nodule turned out to be scar tissue. He then told me that we would go to surgery and that he would first check the lymph nodes and if they were cancerous he would close me back up. It was possible that the radiation caused my lymph nodes to light up on the second scan and my oncologist told me that they do not always go back to their original size after treatment. Long story short I had the surgery, an upper right lobectomy. The surgeon also removed 20 lymph nodes and one rib bone. When he came to my room the next day he said to me, "I could not find any cancer in you, but of course we have to wait for the pathology report". The pathology report said clean margins and nothing taken out tested positive for cancer. Now that I look back on it I appreciate my surgeon and even more, because he was so very, very meticulous concerning my surgery even though they did not agree on all issues with my oncologist. Hope this helps.

Carol

[cat127]

thanks to all who replied. i've talked to my sister a bit more and i do think she's ready to post here and talk to people who've had the lobectomy. i will make a new post, being sure to be clear in my subject that i'm looking for folks to talk to her about the surgery. thanks in advance, as i know there are people here that can be of tremendous help to her.