Lost and confused - 07-30-2016 07:22 PM
My partner Fred had a small SCC lesion removed from his tongue last December. They told us it was all removed but they prefer a wider margin so at the end of January it was resectioned and only scar tissue found.
At the follow-up appointment the surgeon felt his neck and found nothing, but a few weeks later Fred felt a small lump -- not much bigger than a pea. He raised this with the surgeon at a follow-up in mid June, and a CT scan and rine needle aspiration were scheduled. I was present when the FNA was done and observed that to my untrained eye there seemed to be a number of small lumps.As the surgeon is not based in our town it was agreed that he would phone us to discuss the results, which he did not do.
We did however get a copy of a letter to a larger centre advising metastatic SCC and suggesting he go to an MDM (I had to Google that)l. We had a phone call about an appointment a week before it happened. We are eligible for travel assistance and when I phoned th travel co-ordinator she said we were expected to drive. It took me around 5 ous each way to drive. (My partner doesn't have a license)
We drove down the day before and stayed at my sister's place overnight. Then we showed up for the 10 am meeting.
First we met a doctor who felt the lumps and looked down Fred's throat with a scope; then we met the cancer co-ordinator who showed us the meeting room and asked us to wait in the corridor. Medical types arrived, and morning tea went in. We waited, and waited, and waited. We gradually became aware other people waiting were there for the same meeting. People were called in, and came out and their treatment was discussed with them in the corridor. One was having an eye removed, another all his teeth.
Finally after 1pm medical people started to leave, and we were called into an office. Their were 2 doctors present. My partner says they were a radiologist and chemo expert.
We were told that there was also a lump in his chest and would receive palliative care only. He could have painkillers and nursing care. He doesn't actually feel any sicker than normal. The chemo guy said he could have chemo but it's not a lot of use. They asked if we were going home that day. Altogether we were in that meeting less that 10 minutes. And then had a difficult drive home. I don't know how I didn't drive off the road.
Fred had a CT scan for chest pain about April. They didn't find a lump in his chest (or anything else then). I am so confused that the tiny lumps in his neck, and a very recent one in his chest are untreatable. And I feel abused by the way we and other patients were treated at the meeting.
At the follow-up appointment the surgeon felt his neck and found nothing, but a few weeks later Fred felt a small lump -- not much bigger than a pea. He raised this with the surgeon at a follow-up in mid June, and a CT scan and rine needle aspiration were scheduled. I was present when the FNA was done and observed that to my untrained eye there seemed to be a number of small lumps.As the surgeon is not based in our town it was agreed that he would phone us to discuss the results, which he did not do.
We did however get a copy of a letter to a larger centre advising metastatic SCC and suggesting he go to an MDM (I had to Google that)l. We had a phone call about an appointment a week before it happened. We are eligible for travel assistance and when I phoned th travel co-ordinator she said we were expected to drive. It took me around 5 ous each way to drive. (My partner doesn't have a license)
We drove down the day before and stayed at my sister's place overnight. Then we showed up for the 10 am meeting.
First we met a doctor who felt the lumps and looked down Fred's throat with a scope; then we met the cancer co-ordinator who showed us the meeting room and asked us to wait in the corridor. Medical types arrived, and morning tea went in. We waited, and waited, and waited. We gradually became aware other people waiting were there for the same meeting. People were called in, and came out and their treatment was discussed with them in the corridor. One was having an eye removed, another all his teeth.
Finally after 1pm medical people started to leave, and we were called into an office. Their were 2 doctors present. My partner says they were a radiologist and chemo expert.
We were told that there was also a lump in his chest and would receive palliative care only. He could have painkillers and nursing care. He doesn't actually feel any sicker than normal. The chemo guy said he could have chemo but it's not a lot of use. They asked if we were going home that day. Altogether we were in that meeting less that 10 minutes. And then had a difficult drive home. I don't know how I didn't drive off the road.
Fred had a CT scan for chest pain about April. They didn't find a lump in his chest (or anything else then). I am so confused that the tiny lumps in his neck, and a very recent one in his chest are untreatable. And I feel abused by the way we and other patients were treated at the meeting.