Quesions for the Oncologist please

Darwin

Hello Everyone.
You may know from my posts on other threads that I am in Darwin caring for my ex husband who has stage iv bowel cancer with mets to liver and lung. Well I have come down to Melbourne to be with my partner for one week, so my ex is still well enough to manage at home with a daily visit from the community nurses although his now weighs only 59 kilos from 86 kilos.

My partner has been a tower of strength in supporting me and also supporting my ex in this difficult time. Unfortunately yesterday my partner had a call from his brother who is living in Sydney. His brother has just been diagnosed with lung cancer. He stopped smoking in 1993. We need some suggestions as to what questions he should ask the Oncologist as my partner can't be in Sydney to go to the appointment with him we would like to send some suggestions to him. Thanks for your help. I'm starting to wonder who will be next!
Dorothy
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Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

Darwin · Posted: Mon Feb 25, 2008 9:56 pm Post subject: Sorry - more information

After reading Leo's sticky. His brother is 62 and as yet hasn't been told the type or stage of the cancer . He is going for more tests today and tomorrow to ascertain the scope/spread but we don't know which tests as he didn't say on the phone.
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Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Darwin,

So sorry to hear cancer is touching your life again. Any questions will come once the test results are in and he is staged.

A notepad and an extra set of ears is always recommended when meeting with the doctors.

Once more info is available, let us know.

PBJ
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Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

dewey · Regular Joined: 21 Dec 2007 Posts: 21

He needs to find out what stage they are giving the cancer. Where is it located and do they know if it has spread anywhre else in the body. If they do blood work I would ask for a copy of the lab results. What are they thinking for treatment options. Since he has went long since smoking Tarceva might be an option. I think they may be able to look for some specific signs in the bloodtest to help determine if Tarceva would be the best option. Is surgery or radiation options.
Hope that helps.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Unfortunately, blood tests are not used to determine usefulness of EGFR inhibitors like Tarceva. Tumor tissue is necessary for these tests and they aren't quite at the point of being routinely done yet.

The staging, etc. will be told once the appropriate tests are completed. The type cannot be distinguished until an actual biopsy is done. Then a treatment plan will be formulated.

The testing phase is long and difficult to wait through. It's a time of trial that I wouldn't wish on anyone. Tests may include CT scan, PET scan, MRI, bronchoscopy, biopsy, and others. Usually these take about 3+ weeks. They can't make a definitive diagnosis without many of the above tests and it sounds like they are proceeding in the usual way.

When you have more information members will be of more help.

Best wishes,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Darwin

My friend had a PET scan and has just phoned to say the lung cancer has spread into his bones. he didn't know what kind it was and said he was going to have more tests to see how far it had spread. he was told it was going to be pallative not cure. Can anyone direct me to any posts that expalins how this progresses and an idea of survival time?
Thanks
Dorothy
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Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

Darwin

Update - my friend has lung cancer which has gone to his liver, spine and he also has lumps on his head which the Oncologist says could also be cancer.

From what I have read this looks like an agressive cancer with short term survival rates. Any thoughts?
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Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

I've heard of the bumps on the head thing before. Makes me think SCLC, but I really have no clue.

Whatever it is, he is at late stage. Palliative care can be just as aggressive as curative care. There is no cure at this stage, but there is treatment. My husband survived late stage for 2.5 years. Every one and every body is different.

Hope you get more news and again I'm sorry that the picture is getting worse.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Darwin

My friend said he asked the doctor not to give him a progonis as he said it could be a self fullfilling prohecy. I guess that's his choice but it seems to be making things more difficult his family to understand and cope with. He has told them he has three spots on his liver and a few in his lower spine and that he will have chemo for two weeks on and twwo weeks off. I have never heard of a regime of chemo like this. Has anyone else? Does anyone have any idea what sort of progosis there is for these symptoms? I feel so sad for everyone involved and my firend whi is normally a very outspoken gregarious person has just shut down giving any information about his illness or treatment leaving his family in the dark and not knwoing how best to support him. Perhaps it is denial but of course it is totally his choice. I'd appreciate any comments
Dorothy
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Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

brainman

Hi Dorothy. For some people, a prognosis can be a self fulfilling prophecy. It might make it more difficult on the family but if they just live each day as if it was their last, they can still find ways to make it quality time.

I know of several chemo schedules. Mine was a six week cycle: two weeks on followed by a 4 week break. The schedule really depends on the particular chemo and the overall health of the patient. My father took chemo once a week but some weeks his blood levels were off so they could not give him the chemo.

There is only one type of situation where denial should be confronted; when it is affecting the person's decisions. For example, if your friend was outright saying that he did not have cancer and did not need treatment. Otherwise, just try to respect his choice not to talk about it and not to want to know much more about it.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Darwin

Thanks for the info on Chemo regimes Jim as I didn't know there was such variation. I am in Darwin as you know and my friends are in Sydney so I haven't actually seen or spoken to him but I have spoken to the family. They are being very supportive and sensible so haven't pushed for more discussion than he wishes nor have they probed for more information than he has willingly offered but there is much discussion amongst family members. Not being told information seems to be adding to their stress as well as a sense of hurt at being excluded at such a time. Also they are finding it difficult to go from day to day pretending that this is not an issue to be emntioned. That was what prompted me to ask those questions.

I guess things will unfold but it makes me realise how important open communication is with the people we love whether we face illness or not.

Best
Dorothy
_________________
Ex husband's diagnosis was March 2006, stage IV bowel cancer with met to liver and lungs. Current chemo treatment folfiri + avastin +erbitux (cetuximab) every two weeks.

brainman

Well, the commend I made about denial was the counselor in me speaking Embarassed

. I cannot imagine having cancer and not talking about it with my family and I cannot even begin to know how bad it must be on the other side. My heart really does go out to your friend and his family.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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