Here we are again! Feb 2016 Charles had a recurrence in the base of his tongue. Surgeon resected his tongue, removed two involved lymph nodes, and increased the size of his stoma. A PET scan showed two suspicious spots on his upper left lung lobe for metastatic cancer. His ENT has referred him for radiation for the spots on his lung. Do you think this is the best treatment for him?

This was his third recurrence since 2012. We are understandably tired.

Thank you!

Sheryl

Will the RO do a biopsy?

Sheryl, Im so sorry to read about another recurrence! Im sure this is more than enough for both you and your husband. I would suggest you seek out a second opinion at one of the top Comprehensive Cancer Centers (CCCs). With your husbands cancer coming back so many times a fresh set of experienced eyes would be a good idea.

Without a biopsy, the spot can not be identified as cancerous. Sometimes OC patients will have different "spots" show up in their lungs after going thru rads. Not always does this mean they are cancerous. Its happened to me as well. Having false positives on scans after rads is unfortunately quite common. Only a biopsy will determine what the spots are.

Best wishes with everything!


List of CCCs



PS... As a caregiver, take some time for yourself too. Being a caregiver is a difficult job, especially with everything both you and your husband have been thru. Be kind to yourself.

Thank you, Christine. Charles has had all his care at one of the listed CCC. He has an excellent surgeon with an excellent team. His surgeon has worked with an RO located in our town, so we have been referred. Our first appointment is Friday Mar 4. Charles has refused a second round of rads to his head/neck. But is open to treating possible mets to lungs with rads.

Sheryl

Sheryl, do you know how many grays of radiation Charles has had so far? My husband had three rounds of radiation in all -- 70 grays, 20 grays and 20 grays -- 70 grays for the initial treatment, the two courses of 20 grays targeted the swollen nodes in his airway. After the initial treatment, each time the RO would say John was using up one of the five "bullets" he had got left. We were advised to consider carefully because it would mean that in an emergency situation, the RO would not be able to treat him with radiation.
For his lung mets, John was treated with chemo. He was in two clinical trials, one course of taxol and carboplatin and two weeks of capcitabine.
John was not given a lung biopsy when they found the lesions because on the CT scan it was very clear that the lesions had the classic appearance of cancer.
I would suggest that you ask the RO how many grays Charles will be getting and also maybe explore the possibility of chemo with your doctor at the CCC.
It is a tough road ahead, so like Christine said, do take care of yourself and your needs.
BTW, for one of his clinical trials, John had to have a lung biopsy. Like the doctor said, it's like poking a hole in a balloon and trying to not let the air out. There is some risk in a lung biopsy -- e.g. the lung could collapse. These are things you might want to take up with your doctors.

Gloria, I am not sure how many grays he has received. It was in 2001. The RO has all of his records. Charles had a chest ct scan on Jan 20 that showed interval development of several nodules in his upper left lobe. So he took a round of antibiotics and had another low dose ct scan on Feb 3. Usually I can read the scan results but the Dr who wrote the results for the second scan did not appear to be comparing the scan to the first, or any other, scan. But his surgeon is convinced that the lung nodules are mets. I didn't know that mets to lungs could be dx from scans. I was deeply saddened to hear your John passed away.

Sheryl

Sheryl, the reason I asked was that I was given to understand that 70 grays is the lifetime maximum for that particular area. With the two later, shorter radiation treatments, each time the RO made a point of saying that he would try and spare the spine in addition to his five bullets analogy. So, knowing how many grays Charles has had is important.

When John's mets were diagnosed, the CT report said that the lesions had the "classic, seed like appearance." That was how the RO knew it was cancer.

If a referral has been made, surely your surgeon has sent over Charles's medical history. Can you find out if that's the case? If not, it might be worth your while to get copies from his doctor from 2001.

I found that I needed to have all the facts clear so that I could tell the doctors what treatments John had had, when, where and how much. It sounds absurd but not all the doctors read all the paperwork even if it has been sent. Each time John ended up in the ER or was referred to yet another specialist, we got asked the same questions about his treatment history. At some point, after he started to lose his strength, John would lose the narrative and it was up to me to talk about things with the doctors.

Gloria, Charles is fortunate in that all his cancer care, beginning in 2001, was provided by the same team at the same facility. All of his records have been givin to his new RO here in our town. So, I will ask about the number of grays givin back in 2001.

This is the most concerning comment from his scan results.
"Interval development of multiple left upper lobe pulmonary nodules, the most suspicious being a peripheral 9 mm nodule with spiculated margins".

But, I need to pack all this up and try to enjoy each day. Next week we will meet with RO and he can help us unpack. Question is, can I really do that anymore? I sure hope so.

Thank you for being here. Thank you for listening.

Sheryl

Sheryl, packing it up is the best of dealing with it. I taught myself not to worry about CT scan results until I was actually sitting in the chair in the consultation room. It's not escaping from reality, it is not letting worries take over your life. Way to go!

We met with RO today. Turns out Charles does not need rads at this time, his surgeon just wanted us to be under the watchful eye of his friend! So RO coordinated an appointment with MO for next week to discuss options and put together a plan. Since lung nodules are currently growing very, very slowly RO thinks we could CT scan in two months but MO will need to weigh in on that decision. Charles would like to avoid a biopsy.

I'm not sure why but I feel really relieved and at peace!

Sheryl