Has anyone had the experience of the cancer not responding to radiation? My sister was discovered to have a recurrence right about the time she began her radiation treatment - she is about 3 weeks into now. Yesterday her oncologist talked to us about some other issues which are making him speculate that it might not be responding to the radiation. Of course I confirmed with him that it was just speculation on his part right now but was wondering if anyone else had this experience.

carol,
my sister's recurrence (near the site of the first tumour, on the other side of her neck) was discovered as she was finishing her radiation, in fact, about a week before the end of treatment. as i understand it, the protocol is to give radiation to both sides precisely because of the high rate of recurrence in SCC cases, often in close neighbouring areas. if they're not giving her radiation on both sides, perhaps you should ask them to explain why.

be well.

gita

thanks gita - Well turns out the scan they did yesterday did not indicate the cancer wasn't responding - they are radiating both sides of her neck.

Carol, from what I was told by my oncologist is that the tumor response to the treatment can't be determined within a short period after treatment. In my case, the follow up scans were given at 2 months post treatment to find out the cancer status.I feel oncologists shouldn't make speculations without concrete evidence. This can sometimes be scary.

Karen.

totally agreed: oncologists shouldn't speculate without concrete evidence. it seems like in addition to surviving the cancer itself and the side effects of the treatments, it's crucial to also learn how to emotionally survive doctor visists and practically advocate for survivors. perhaps the OCF collectivity, with its wealth of experience and knowledge, could develop a how-to-deal-with-your-oncologist manual and put it out there for others. i've read a lot of stuff on NCI and ACS and various other sites, but rarely are these aspects touched upon.

my sister's oncologist told her on tuesday, upon a cursory examination, that it didn't look like chemotherapy (1 session only) was working and they might not continue with chemo. a longer examination, some tests and a few days later, today she was told that the tumour has responded to chemo and its size has shrunk by 16%, and now she's scheduled for another chemo session! between tuesday and today, we've been through emotional hell and heightened anxiety. i find it totally unethical and unprofessional for oncologists to take so lightly the impact of what they say on patients and their families. carol, like you said to me earlier, i'm learning to adopt the attitude of "let's see what the tests show" and "let's just wait and see" and "the fight ain't over till it's over (and maybe even then it's not over?)"

be well.

gita
(head spinning from the roller coaster ride)

No offense, but I have to disagree with Karen and Gita on this one. Because of the changes from surgery and RAD, it is just too hard to have concrete evidence. I know everyone is different, but in Heather's case, it was an undetected tumor that was causing a lot of the problems she had during and after radiation. Karen, I'm sure you remember some of it - the infections, the fistulas, the intense pain. We kept complaining that something wasn't right and the doctors kept saying it was just from the RAD. Even replies I got here on the forum indicated that it could all be from the RAD.

Now I know radiation causes a lot of problems, but if just one doctor would have entertained the idea that there might be a recurrence, we might have found the second tumor while it was still small enough to be surgically removed and I might not now be grieving for a lost daughter.

I'm sure it would be excruciating to be told there might be a recurrence, then find out everything is okay only after worrying yourself to a frazzle thinking about it. But the alternative is definitely not one you want to deal with.

Carol,
Heather's tumor was resistant to the radiation. I often wonder if adding chemo would have made a difference. I strongly advise everyone to have chemo with the RAD. The experts that Heather's doctor consulted were concerned about the long term effects of the chemo, which is really idiotic when you think about it. Being stage 4, Heather's chances of even being alive long term weren't good to start with and by being overly cautious, the docs cut her chances even more.

I know! I know! Maybe even chemo wouldn't have helped, but I sure wish we never would have asked for the "expert's" opinions and just went with the gut feeling of the local oncologist, which was to add chemo to the RAD.

Sorry for ranting, but I feel strongly on this issue. Looking back, I would rather have agonized over 3 supposed recurrences that turned out to be nothing than to have had the recurrence missed because there was no concrete evidence of it.

Rainbows & hugs,
Rosie

Carol in RH: I have to agree with Rosie. I had the radiation and chemo (cisplatin) treatments and then surgery which was the recommended treatment based on a study which was in progress at that time. In fact, they wanted me to be a part of the study until noticing that my tonsilectomy disqualified me from participating. They went ahead with the treatment, though, with the best indicated results to that time in the study, which was rad & chemo then surgery after the tumor was reduced in size. After my surgery, the pathology report showed that the cancer had been completely destroyed. There was no cancer left in any of the lymph nodes after surgery. The rad/chemo had killed it all and I could have forgone the surgery. But I wanted the nodes removed completely so there was no chance of a recurrance from that location. I have since heard somewhere that the rad/chemo then surgery regimen is the newest preferred treatment for neck tumors. So it is a good idea to have both in my opinion.

HI all - thank you for your responses. We have already had an appointment with the medical oncologist re; chemo and a follow up appointment as well once the radiation is done. Do they usually do a scan at end of radiation?

rosie, i'm truely sorry about the loss of your daughter. in fact i totally agree with you. just to clarify: i'm not saying that the symptoms should not be taken seriously and looked into. quite the opposite. in my view, my sister is, as most other patients in most other cases, the best judge of her own conditions. she knows what's happening in her body before anybody else does. i've ranted before about the doctors not taking seriously my sister's symptoms when a new tumour started showing up. they thought it could just be a simple infection and it took them over a month to do the tests that showed that the growth was in fact cancerous. in the process, they might have in fact hurt her survival chances as during this time the tumour grew quite rapidly. here too, they made a subjective judgement that was erroneous.

so let me ammend my point: so much, physiologically and psychologically, rides on the medical professionals' judgements, and they should not make judgements without proper examination and investigation. telling my sister that chemo wasn't working before they actually had any evidence put her and all of us in psychological crisis, while dismissing early symptoms of the new tumour increased the physiological risk. in both cases what was missing was actual investigation (which finally only happened upon our insistance and pressure) and, may i add, respect for my sister. if the relationship between doctor and patient was more oriented towards the patient, things would be so different.

good thoughts, healing and peace.

gita