I would get another opinion by the most qualified oral cancer center in the world before I would accept this one opinion.

Thank you all for your kind thoughts and prayers. It is indeed a very difficult time for us.

PaulB, the RO has already ruled out surgery; his comparison being, "when your house is on fire, just dousing the bedroom won't help." The MO is in charge of drug development and it is possible that she might suggest clinical trials.

Nancy14, your case (I read about it on the other thread but could not comment as I was still waiting for the results of John's CT scan) may be quite different. Please take it a day at a time and try not to get ahead of yourself.

Hi Gloria. Just finding your post this morning. I'm just so sorry to read the current update with John. As a caregiver it is our worst fear and just leaves us with such a helpless feeling. I 2nd the suggestion of seeking a 2nd opinion and clinical trials. Continued prayers to both you and John as you travel this road together. Hugs, Wanda

I agree. I know you are in TO and I do believe you are being seen at PMH - I would ask two things... 1 for a biopsy of the lungs... I would want to know how many nodules or tumors they are talking about, then I would want to know the results of the biopsy (is it mets for sure) a friend of mine who's husband was treated for the same cancer, had something appear in his lungs, they went in and biopsied and discovered it was not mets but early stage lung cancer, they removed it and treated him and he is still walking the earth free and clear today... You want to know for sure. Hugs. And have faith.

Cheryl,
That is brilliant, get a biopsy of a lung nodule to determine etiology of what is showing on the CT of the lung. It seems there is a big fork in the road ahead depending if it is metastasized or it is new.

Gloria,
How did they determine it is metastasis and not a new cancer? It seems they only went off the recent CT scan.

Praying and hoping for you, Don

So sorry to hear that you have joined the same boat as us Gloria.

Just to share some of my advise that I have acquired over the past month or so which I hope may be of some assistance.

a. The doctors will never be sure as to whether or not the cancer in the lungs is metastatic cancer or a new primary as SCC looks exactly the same no matter what part of the body it is actually from. However, as the duration from the cancer appearing from the lung to when treatment was completed is relatively short - there is a very high chance that it is indeed metastatic and should be treated that way.

b. It is important that SYMPTOMS caused by the cancer in the lungs (i.e. shortness of breath, back pain etc.) is taken care of asap. From what I have researched, chemotherapy will be the only course of treatment offered and will be used for palliative purposes. Tomotherapy and/or IMRT may also be used to reduce the tumour size in the lung but should only be done if symptoms are severe and/or may cause further issues later down the track.

c. Unfortunately, curative chemotherapy is not possible when a H&N cancer moves into the lungs and has shown high levels of toxicity & very minimal impact. There are certain clinical trials that your MO may be able to introduce you to and one that I recommend is treatment using Reovirus. More info on current trials can be found @ http://www.oncolyticsbiotech.com/clinical-trials

d. Mind over matter is something that ALL the doctors have told us during this last round for me and Jen. Keeping a strong, healthy mind coupled with spending time with loved ones is the single most important thing you can do when stuck in situations like the one we are currently in.

As someone who is only a few weeks ahead of you in this journey, I understand the confusion, anger and "what now" that must be consuming you and I hope some of the points I have outlined above gives you some answers.

Best of luck and my prayers are with you both.

I called up the RO and talked to him for about thirty minutes yesterday. They see 4 to 5 (the RO was speaking from memory and did not have the actual report in front of him) nodules in the right side of the lungs. They are about 5 mm in size and have the classic, seed-like appearance. These are the large ones that have shown up on the CT scan. They are growing and they were not there the last time John had a lung CT scan right before his chemoradiation treatment in November.

The RO believes that John's inability to swallow is likely related to the TX he has had, but now with cancer in the body, it is possible that the gastroenterologist will not want to aggressively treat it.

Like Jay Jeong said in "C" in his post above, the RO said that most doctors will not treat the cancer in the lungs aggressively as the high toxicity will greatly impact the patient's quality of life but without the patient getting any better.

We now have an appointment to see the MO in two weeks' time. We will see what she has to say and whether a biopsy can be scheduled. In the meantime, we will be talking to John's GP about counselling.

Jay, I particularly want to thank you for your post, knowing that you have your own problems to deal with right now. Like I have said before, I came onto the forum just around the time Jen was finishing her treatment. I had always taken comfort in the thought that she was able to beat the tongue cancer and in your positive attitude. It saddens me to find that we are now facing the same problems, again, just a few weeks apart.

I'm concerned about a) I could be wrong, but i am under the impression that a biopsy will definitively tell you if it is small cell lung cancer, non small cell lung cancer, or squamous cell carcinoma. They are three different types of cancers. The may not be ale to tell you where the squamous cell came from, but in that case it would likely be mets.
I'm only saying this because they are all treated different ways. Or in the SCC case not really treated.

I would still push for a biopsy. I think or maybe doesn't wash for me. There is risk though with a biopsy as well though. Hugs. I wish I had answers -

We saw the MO yesterday and went over most of the issues that have been brought up in the previous posts.

John is not a candidate for any clinical trials because of his closed esophagus. Most medications in clinical trials are in pill form and doctors are forbidden from crushing them to put them in the PEG tube since no one can predict what may happen as a result -- e.g. will the medication stick to the plastic tube, will it lose its efficacy, will its efficacy become way too strong etc, etc.

A biopsy is potentially dangerous at this stage. Since the behaviour of the cancerous cells which have "escaped" from the head and neck area is well-documented, the doctors do not feel that they want to take the risk of doing a biopsy. In addition, if a nodule is formed away from the head and neck area after a lapse of time post-treatment, it may indicate a possible new primary; however, when the nodules are found this close to the end of treatment, it is likely to be metastasis.

The deep vein thrombosis that John developed after his second session of cisplatin (an ultrasound at the end of July indicates that he still has blood clots in his legs)can also constitute problems for further chemotherapy at this juncture. The last time, there were times when his blood counts were so low that he could only be given half the dose of Heparin. Since any systemic treatment at this time is likely to Cisplatin or Carboplatin, we can expect a repeat of all of the problems.

I understand that no one wants to told that there is little that the doctors can do now. However, at some point, one has to seriously consider the quality of life issues and one has to trust the judgement of our doctors.

I agree, sadly - did they not mention Erbitux at all? Regardless best of luck and much love to you both