Hi all,
My dad was recently diagnosed with stage 4 SS with about 10 lung mets ranging in size, biggest is about 1 cm (at last xray a month ago). We were told surgery is not an option even though they are not in any critical areas. He is in otherwise excellent health and is not feeling the effects of the cancer at all, except a bit of fatigue from radiation which he just started last week for the main tumor in his leg / groin. As soon as tests showed lung mets, he was whisked into a palliative care regime and no longer a curative one.
From the reading I've done, it seems that surgery, targeted radiation, lung perfusion are potential treatments for the lung mets. We will have a discussion later this week but I'd like feedback going into our meeting from others' experiences. Is surgery really not an option when it has metastasized to the lungs with about 10 lesions? Are there really no other options other than palliative care until he feels symptoms and then chemo?
We have had great difficulty even having a discussion with any oncologist overseeing my dad's care, so any feedback would be greatly appreciated.
Thanks!
Karen
I am in the same exact situation but with 20 mets! 
look up dr Rolle in Germany. I just sent him all my information. My email address is ■■■■■■■■■■■■■■■■■ if you want more info. I am also going to Mexico for alternative treatment. I have seen one of the best specialist in the US and she offered NO hope. I am not gonna lay here and just take chemo like they want me too until I have tried it all! I have a 2 year old daughter. I am researcing many things and would love others to join me in my research. The great US of A is not likely to have anything that will help me and it is really frustrating.
Hi MissMya,
Thank you for your info! I have looked into Dr. Rolle - think I will send along my dad's info to him soon. I'll email you about the process you went through and the contact info.
My dad has been doing loco-regional hyperthermia on the main tumor while he is in radiation treatment. He is also doing hyperbaric oxygen therapy at the same time. I've done a lot of research on both of these complementary treatments and would be happy to forward. We are fortunate to live a half hour away from the only place in Canada offering the loco-regional hyperthermia. We have my dad on a mostly vegan (eats fish), sugar-free diet (still eats low-glycemic fruits and whole grains) and are monitoring his pH. When we first found out he had cancer, his blood / saliva was quite acidic, and after 8 weeks of his new diet, he is now in a good alkaline range. If you want any info on what we're doing, I'd be more than happy to send it your way.
Yesterday he had a follow-up X-ray to check his lung mets, and while they grew comparatively fast previously, over the past 6 weeks there has been no detectable growth! We are taking the news for what it's worth and will keep doing what we've been doing, hoping every little bit helps.
Hiya Karen, I am so sorry to hear about ur dad, my husband also has mets on his lungs and no more then ur father pallitive care were brought straight in, they have been with us for 6 months now and in the beginning our live were revolving around them. I have since spoken out and asked them to leave us be as colin doesnt have any major symptoms from his lungs and we just want to be a normal family while we can, this time also gives us a chance to forget so to speak about his cancer, if you find it hard to talk to your oncologist write out questions and get ur answers i found that great... sadly they seem to do radiation and chemo once its in the lugs and whenever surgery is mentioned we were fobbed off. Keep pushing to get a response that you are satisfied with. i wish you all the very best of luck xx
Thank you, and sorry to hear about your husband. It is incredibly frustrating and saddening to hear of others having similar experiences. Has your husband done the full rounds of radiation and chemo? Where is he in his treatment protocol?
irish shiela said:
Hiya Karen, I am so sorry to hear about ur dad, my husband also has mets on his lungs and no more then ur father pallitive care were brought straight in, they have been with us for 6 months now and in the beginning our live were revolving around them. I have since spoken out and asked them to leave us be as colin doesnt have any major symptoms from his lungs and we just want to be a normal family while we can, this time also gives us a chance to forget so to speak about his cancer, if you find it hard to talk to your oncologist write out questions and get ur answers i found that great... sadly they seem to do radiation and chemo once its in the lugs and whenever surgery is mentioned we were fobbed off. Keep pushing to get a response that you are satisfied with. i wish you all the very best of luck xx
He has had full radiation but only on his leg and it did kill of some of the cancer, at the moment he is on high dose ifos and is due in for a scan next week then depending on the result of the scan he will decide on whether to go for a 3rd roundas he is feeling very bad with the treatment. If he decides not to go ahead with the 3rd round of ifos there is only one more chemo left, I am hoping and praying the ifos is working ESP since surgery is not an option and this for us is the most frustrating part
All my love Steph x