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elkiesmom

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Four months ago Gary had his pet scan and blood work and all was ned. The ONC said he would see him in 4 mos not three and he would be given a CT scan and then a CT/PET scan.The 4 mos is here and I am worried why all the scans since his last scan was ned as was his blood work. Any answers?

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I see your husbands surgery was around the same time frame as mine.I dont know why they would want to see him again already but I think every onco is a little differant. I was given a ned last dec. and my onco doesnt want me to have another scan until I see him next dec. So I am kinda of the opposite of you. I worry about going from every 3 month scan or xray to only once a year. I quess we worry if we dont have enough or we worry if we have them to often.You might call your onco and talk to his nurse. I wish you both the very best whatever they decide.

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Well it sure is hard not to worry. I think every med onc has a different approach to how often follow up CT scans are provided. It is a bit of a balancing act I am sure. Patients are also different on how often we might want them. We can always ask why though and what other options there might be. Try not to worry too much....easier said than done for sure.

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"beatlemike"]I see your husbands surgery was around the same time frame as mine.I dont know why they would want to see him again already but I think every onco is a little differant. I was given a ned last dec. and my onco doesnt want me to have another scan until I see him next dec. So I am kinda of the opposite of you. I worry about going from every 3 month scan or xray to only once a year. I quess we worry if we dont have enough or we worry if we have them to often.You might call your onco and talk to his nurse. I wish you both the very best whatever they decide.

We had thought it would be every 6 mos for 2 years and then once a year after the 5th year. I quess we will find out Fri. What worries me is that a few mos ago we moved to NC but we are still and will still the same ONC so 6 mos would have been better travel wise. It is an 11 hour drive to FL. I did tell my husband that if they find anything it has been only 4 mos since is last scan so maybe it is for the best.

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I would be thankful that his onc wants to keep a close eye on him. My husband's cancer recurrence was at the 3 year mark and I believe if he had been monitored more closely he might be here now. By the time, he was diagnosed the second time, he was stage IV . He was getting chest xrays only , at the point of diagnosis and his tumor didn't show on the xrays. :-( There has to be a happy medium, but keeping an eye on things is a really good idea.

Sue

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I just had a CT/PET and was told I was in remission. Nevertheless, my oncologist has me on Avastin maintenance every three weeks and sees me every six. The CT/PET was April 1, 2008 and I'll find out on May 13 what the scan follow-up schedule is. I was on the side of I don't need all this stuff now until I learned my daughter-in-laws father, after surgery and "light" chemo for a dx of IIa, had a scan that showed nothing but a little blip on his liver (they even took his port out it seemed so nothing). By the next three month scan, he progressed to Stage IV. Scared the jeebies out of me and I immediately decided I'd go with my oncologist and her conservative maintenance and follow-up. I'm hoping if I put in more time in with no changes, my oncologist may begin to trust the remission a little more. Same may be true for your husband.

Hang in and be glad he's being watched closely.

Judy in Key West

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"jaminkw"]I just had a CT/PET and was told I was in remission. Nevertheless, my oncologist has me on Avastin maintenance every three weeks and sees me every six. The CT/PET was April 1, 2008 and I'll find out on May 13 what the scan follow-up schedule is. I was on the side of I don't need all this stuff now until I learned my daughter-in-laws father, after surgery and "light" chemo for a dx of IIa, had a scan that showed nothing but a little blip on his liver (they even took his port out it seemed so nothing). By the next three month scan, he progressed to Stage IV. Scared the jeebies out of me and I immediately decided I'd go with my oncologist and her conservative maintenance and follow-up. I'm hoping if I put in more time in with no changes, my oncologist may begin to trust the remission a little more. Same may be true for your husband.

Hang in and be glad he's being watched closely.

Judy in Key West

Judy that is what we are saying to our selves . The tests will pick up something that the CT or PET doesn't pick up. Gary had theCT/PET scan today and the CT tomorrow and we see the ONC friday. He was supposed to have the plain CT scan on monday but he got there at 930 and they said he was late. Today he spoke to the lady who told him to come at 930 and she was so upset. She said that she told them they are coming from NC (we just moved from fL to NC) and they should have takem him. The group has a lot of new people so I hope the CT scan has been read by FRI since we have to go back home. His ONC has always watched him closely and he is also in charge of Gary's coumadin and his iNR levels. We can do that testing in NC since they have a quest lab and they call our ONC with the results.

You never get use to the anticipation when you go for the test results do you?

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I agree that your onc is probably just being super cautious. And thats a good thing, especially that he just recently received his NED status. Maybe after a few good scans, they will opt to have them farther apart. I personally would rather have too many than not enough.

And, yes, you NEVER get used to scan-xiety!!

Wishing all the best for a GREAT scan - keep us posted.

Hugs - Patti B

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My husband was ned for 3 years, or so we thought. He started with stage 1B and had a pneumonectomy. First year had scans and then to xrays. At 3 years he was diagnosed at stage IV because it had not been detected. I only wish someone had told us to ask for more scans. We were ignorant. Everyone just wants to make sure you benefit from our good and bad experiences. I would most definitely opt for scans , as many as they would do.

Sue

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Thank you so much for your encouragement. We will ask for as many scans as we can.We were so surprised that our ins co gave the ok for the CT and the CT/PET scan.I just wonder why at the three year mark this is being offered to us? I am so sorry for your loss.

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I think I see what you are saying. You are a bit concerned as to why the doctor thinks Gary needs the scan and my husband's doctor didn't . I think it is a matter of who is getting the best follow up care... Gary is, in my opinion. For one thing, Mike didn't have an oncologist because he opted not to have chemo after surgery. Back in 2001 chemo following surgery was considered experimental and was a clinic trial. Mike opted out. His follow up was handled by his surgeon . In my opinion, as Patti has said, I think Gary's doctor is just being very cautious and there is a lot of comfort in that. Sorry if I have been overly opinionated on this subject, but it's good to hear all sides . I didn't know anything about this board or others back in the day of his surgery, didn't even have a computer.. imagine that.. :lol:

Take care and God Bless,

Sue

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God bless this board. Gary was tol by the surgeoon that it was up to him to do chemo. We then went to our ONC and he told us the pros of chemo. It is not preety going through chemo but we think it was worth it. Believe me you are not comimg across overly opinionated . I am also on an other cancer board and after this woman had her surgery I think in 04 her surgeon said they got it all and no mention of Chemo. She died a few monyhs ago. Not to say this couldn't happen to Gary for you never know cancer does what it wants to do but we are worried since we moved last month to NC from FL and we would have to come to FL for treatment even surgery. Atna does not have a net work in NC only in the county we live in and I would never have Gary go there. Duke is another alterrnated but we would have to pay a lot more since we would be going out of network. He could do medicare in a few months but he doesn't want to do that since I will not be covered by medicare. I wil be in two years so in 18 mos I can go on cobra and he could dropped his works ins and go for medicare or cooud keep both. any things to think about. I just want to get trough Fri.

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I had my my upper left lobe removed in September and was staged 1b. The surgeon, pathologist and internal specialist all said they got everything and i did not need adjuvant chemo. I met with an oncologist and then got a 2nd opinion from another oncologist. Both said it was my choice to have the chemo but research did not support my decision. I decided to have the 4 rounds of chemo and finished a month ago.

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Elkiesmom: I didn't mention that one of the reasons I initially balked at the Avastin maintenance was because it meant continuing to travel from Key West to Orlando for treatments every three weeks. It's a seven to eight hour trip and we've been doing it since October and were really looking forward to a break. Well you know, once you know what you have to do, you do it and it's o.k.

What I really feel bad about is when I hear, and I do all the time, people having to wait days and even a week for test results. When I have scans at MD Anderson, I get the results directly from my oncologist the same day. I can't believe my good fortune because I really don't wait well so I really feel for you.

On the subject of the scans and why they are being ordered/approved, I know Dr West on cancergrace.org told me that once you are diagnosed as I have been, the expectation is that it will come back and that's why they do some of the things I didn't understand given I'm in remission. I don't know about your husband's diagnosis but it might be something like that and it's just a protocol they follow. I bristled at the mention of the "expectation" that my cancer will return but ultimately decided it was just that, an expectation, and I don't have to meet it. Same for your husband.

Judy in Key West

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Gary has always had scans but neve ar Pt/CAT scan as well as a CT scan.hhat just threw me. I feel that Gary had asked shouldn't he be every 6 mos now so his onc put him on 4 mos and then added the PET/ Ct scan .all of his tests since 06 has been ned. The move was a +for us us and he is lucky that he has a job were he can work anwhere. Yes we hate the 11 hr trip but have been doing it more since we sold the house in FL. Every 10 days just to have the place spotless for the new owners and going back to NC to fix up our place. Fl is such a long state isn't it?

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elkiesmom: I can tell the frequency is really freaking you out but I have to agree with others here who have said it's better to err on the side of caution with this disease. I admit, though, I thought as soon as I read it that I'd never heard of getting a CT and a CT/PET around the same time. Since you mentioned it again, I think I'll go over to Grace and ask Dr West. I'll let you know when I get a reply.

And yes, Florida is a long state, believe me I know since I live at the southernmost end. Whenever we travel north, it seems forever before we cross the border into Georgia.

Judy in Key West

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When He first gave us the script and after looking at iit all we saw was th CT/PET scan. Three months ago he had hsi PET scan as all was wel. The one who puts down the scrips and the time only sa that also. She is the one who called us a few wels ago and said she made a mistake and ONC said he wanted a CT scan also.. The only thing it night be is he hadn't had a cT scan for several months. I really don't know and tomorrow he gives us the results. Also a year ago he had colts in his lung and when we saw him last time His ankle was swolen and red and hot matbe even though it is ok now so it if it was a clot which I am sure it was even though his inr was in rage he might want to see if it traveled?

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I posted Dr West last night but am wondering now if I misunderstood you and asked the wrong question. You did say you were questioning why a CT and a CT/PET were scheduled within a day of one another didn't you? If so, Dr West thinks it could happen that someone would order both a CT and a CT/PET because the CT by itself might offer more detail than the CT that's combined with the PET. It didn't address the proximity in time, just the info offered by the two tests. He explained it like any electronic all-in-one. Any one function might not be as good as a standalone--i.e. a standalone camera will likely take better pics than a camera in a cell phone.

Anyway, I wanted to get you some kind of answer but am glad you are beginning to be able to think through to some little details that might explain your husband's particular follow-up. I suffer from a similar need to know or need to make sense of things the doctors say or do. The questions in my mind, of course, always come up between visits

Good luck tomorrow.

Judy in Key West

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We went to the ONC before going home to NC and he said NED infact he said Gary's Lungs looked so much better. He also said we are on the 6 mos plan so I guess putting him on 3 months for almost three years and then on 4 mos was to see if 6 mos was oK. After almost three years of every three mos scans and the one month of 4 mos scans plus thet PET/CT scan showed him Gary was ready for every 6 mos. So happy. Now I can worry about it being to long of a wait. But that is just me I always have to worry about something.

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elkiesmom: Oh a huge congratulations to you and to Gary. I can't think of a better way to end the week than hearing such great news from a fellow site member. Enjoy this time in your new home state and come back to Florida for more good news in six months.

Yeah!

Judy in Key West

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Hi Judy

Thanks so much and you bet we will be there every 6 months. Really more like three since Gary still will go down every few months at the main office for work and we are still keeping all our doctors since Aetna does not have a net work in NC. A few doctors in NC accepr it but they are nothing to wrte home about.

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Was reading your latest post and the news sounds fantastic, NED is a beautiful word. :D The follow up sounds good. I think the problem where Mike was concerned was they were doing chest xrays rather than CT scans and the chest xray saw nothing.. :( Sounds like you are on the right track to me... You can relax now. God Bless.

Sue

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Sue all doctors are different. My Cousin's husband was Diag with colon cancer 4 years ago and when he was doing OK and they did a colonoscopys every 6 months. Last year he came down with a cough and then was given a ct scan. He has LC plus cancer and cancer in the spine.When Gary came down with LC and after the surgery and chemo he had started the scans I asked her why her huusband didn't have any scans ? She said the surgeon didn't reccomend them but he akso was not seeing an ONC. To me an ONC is the main doctor who reccomends a surgeon, gives you pros and cons of chemo and sets up the tests. So far he has been our life line.

Lorrie

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