what would you do?

kangatoo · October 2005

Hiya all. I thought it was about time I asked a question and this one needs your replies guys n gals.
I went to my doc today to get a referal for my next ultrasounds. I could not get an appt. with my normal gp( a lady) but got an intern. Ok..he was nice enough but nonetheless apart from my records does not really have the full picture. Anyway he left me for about 15 minutes while he conferred with another gp(male) at the clinic..one of the more experienced doctors. (whom I was never comfortable with)
This intern returned with a query for me. He asked me if I thought that having ultrasounds every 3 months was "overkill" In his, and the more experienced gp's opinion, it is. OK..I am now NED and am 2 years out from my surgery and I guess that they have a point to make. They think that 3 monthly blood CEA testing instead of 2 monthly is now warrented. They also think that I should only need ultrasounds (upper abdominal..mostly of the liver) to be done every 6 months with a colonscopy about august next year. They did, however say it is my choice but pointed out they think the 2 month bloods/3 month ultrasounds is pointless.
I do know that any metasteses needs to be from 1/2 to 1cm in size for an ultrasound to pick it up, especially in the liver.
I have always been of the belief that the earlier the detection the better and the timing of my scans I am happy with. They said that if I am uncomfortable leaving 6 months gap then I can choose to do as is done now..but they still think it a waste of time and money. I often read here about MRI'S, CT'S and PETS done in other countries..even for my staging, stage 2, so I would have thought that ultrasounds (much cheaper) would be a reasonable expectation. Over here in OZ I think that they tend to shy away from the more expensive scanning unless absolutely necessary. Thats my thoughts..what do you all think?
Should I opt to continue the way things are or have time durations for scan increased? I will discuss this with my normal gp asap as she worked out the original routine.I would kick myself if I changed to 6 monthly and during that 6 months the beast rose it's head. Am I paranoid ..or what?
Thanks for listening guys n gals, cheers, Kanga n Jen

Lisa Rose · October 2005

Hi Ross,

Here in Canada things are done much the same as OZ...

As soon as I had my first 2 years put in cancer free, I was put on the 6 month check... It was hard for me at first but I'm OK with it now. Often I have my family Dr run my blood in between that time frame. My ultrasounds are at 9 month's so I think 6 would be fine. But that's just my 2 cents worth ...

Lisa

kerry · October 2005

Kanga,

My advice is to do what you are comfortable with and as you remain NED you will become more comfortable stretching out your ultrasounds and blood work. As long as they will let you make the choice......you should do what makes you the most comfortable.

My 1st onc. insisted that I only have my scans every 6 months for the first year and then once a year after that.....well, I wasn't comfortable with that and insisted on ONE MORE SCAN before going to the new schedule...I had a recurrance...had I not insisted on that scan I would have gone another 6 months to a year with this stuff going wild in my body. Needless to say, I changed doctors and cancer centers. I now have the care I am comfortable with.....and so must you.

Take care...I'm thinking of you and Jen as you get through this. Let me know how your ultrasounds comes out.

Hugs,

Kerry

2bhealed · October 2005

hey kanga,

at 2 years I was going every 6 months too. Now I go once a year. My local gastro doc did a colonoscopy last year and said he didn't need to see me for 3 years! I was not comfortable with that at all so this year I went back to my regular onc and had another colonoscopy. HE said that the every three years was for screening but WE were dealing with FOLLOW-UP. Very different approach. If I go to the local doc it costs me nothing but lab fees (my hubby works at the hospital) but if I go to my regular onc then I pay 10%. To me it was worth paying the moola to have that piece of mind. And besides, I have my on-going relationship with my onc (whom I love) and the local doc has no history with me.

All this to say.....do what feels best for YOU if you are willing to pay the price, BUT it is normal in these parts to have testing every 6 months for the first 2 years and then once a year after that.

As for bloodwork.....I never had a CEA so that is a moot point for me. I do blood once a year too.

hugs to you and jen.

peace, emily

oes620 · October 2005

Hi! Do what you're comfortable with. I notice a lot of use of ultrasound scans mentioned. My tumor was 6CMX8CM and was nearly MISSED on an ultrasound. I'm 18 months out from surgery now and am scheduled for a PET scan next February. I know medical services are different here, but I'm going for the big guns as my tumor was attached to my liver. Not knowing the where/what size of your mass, I can't say what I'd do in your shoes. Be glad you have the choice!
Harriet in Texas

CAMaura · October 2005

oes620 said:
Hi! Do what you're comfortable with. I notice a lot of use of ultrasound scans mentioned. My tumor was 6CMX8CM and was nearly MISSED on an ultrasound. I'm 18 months out from surgery now and am scheduled for a PET scan next February. I know medical services are different here, but I'm going for the big guns as my tumor was attached to my liver. Not knowing the where/what size of your mass, I can't say what I'd do in your shoes. Be glad you have the choice!
Harriet in Texas

Hi Kanga -
You could always test the waters with a small step. How about both tests at a three month interval? See how you feel and go from there. In time, you could feel comfortable with a bit more time between ultrasounds. The nice thing is that the docs are giving you the option to not change now (just the guilt!) and that the tests are non-invasive. Plus, I think I remember you saying that you really liked your ultrasound-tech. You could ask her about it next time. And, you could also consult with the Radiologist; this really is their area of knowledge. All the best to you making this decision. If it is creating too much worry, you can think about it as an option for the future. Take care - Maura

alihamilton · October 2005

Difficult decision to have to make but I agree that you should go with whatever makes you most comfortable. My husband was dx around the same time as you were but was at a more advanced stage. He is only having CT's once a year now...due one soon. Now I have no problem with that as some say too many CT's are not good. However, he is to have a CEA test in a month's time and that will be six months after the last one. This does concern me somewhat. I do not think ultrasounds have any adverse effects, do they? If this is the case, then I really think you should have them as often as you feel is right for your peace of mind...if one can ever really have peace of mind after this dx!!

All the best,

Ali

goldfinch · October 2005

i agree with "do what you are comfortable with." But maybe you could test the waters by going every 4 months for a year.
Mary

ron50 · October 2005

Hi Kanga and Jen,
I had a surgeon and oncologist who both considered that I was certain to metastacize because of the aggression of the tumour and the number of lymph nodes involved. Upon initial diagnoses I had a scan and an ultrasound both of which showed no spread. My initial cea was only 2.8 so that was not considered a useful medium for diagnosis. I had a second colonoscopy at 6 mos ,simply because the first couldn't get passed the tumour. I had monthly blood tests for the first year but that was only to monitor blood counts whilst on chemo. I had a scan (ct)at 12 mos then cea every 3 mos for the second year. After that it was a scan every two years until the 5 years was up with colonoscopies on average ever 18 mos ,only because they keep finding small polyps.
The only ultrasounds I have had were to check on gallblader and they showed no problems. It wasn't until I developed pancreatitis that they got serious and removed by gallbladder. It had around 150 little black stones in it so that hasn't given me a great deal of confidence in ultrasounds. In my opinion your own instincts become your best weapon to stay well. After cancer you certainly become a lot more aware of your own body and what's happening with it. On several occassions I demanded investigation of symptoms that troubled me . On the frst occassion it resulted in them finding duodenal ulcers and the last time it was the gallbladder which they didn't find but I have made it abundantly clear to them that they should have. Having had plenty of genuine health problems over the last 8 years I will NOT let doctors treat me like a hypocondriac.
I guess what I'm trying to say Kanga ,is that you may have to kick some butts but you have to take charge of your own health and sometimes you won't achieve that by being nice or reasonable. You are doing fine so far so maintain the rage and stay well,Ron.

kangatoo · October 2005

ron50 said:
Hi Kanga and Jen,
I had a surgeon and oncologist who both considered that I was certain to metastacize because of the aggression of the tumour and the number of lymph nodes involved. Upon initial diagnoses I had a scan and an ultrasound both of which showed no spread. My initial cea was only 2.8 so that was not considered a useful medium for diagnosis. I had a second colonoscopy at 6 mos ,simply because the first couldn't get passed the tumour. I had monthly blood tests for the first year but that was only to monitor blood counts whilst on chemo. I had a scan (ct)at 12 mos then cea every 3 mos for the second year. After that it was a scan every two years until the 5 years was up with colonoscopies on average ever 18 mos ,only because they keep finding small polyps.
The only ultrasounds I have had were to check on gallblader and they showed no problems. It wasn't until I developed pancreatitis that they got serious and removed by gallbladder. It had around 150 little black stones in it so that hasn't given me a great deal of confidence in ultrasounds. In my opinion your own instincts become your best weapon to stay well. After cancer you certainly become a lot more aware of your own body and what's happening with it. On several occassions I demanded investigation of symptoms that troubled me . On the frst occassion it resulted in them finding duodenal ulcers and the last time it was the gallbladder which they didn't find but I have made it abundantly clear to them that they should have. Having had plenty of genuine health problems over the last 8 years I will NOT let doctors treat me like a hypocondriac.
I guess what I'm trying to say Kanga ,is that you may have to kick some butts but you have to take charge of your own health and sometimes you won't achieve that by being nice or reasonable. You are doing fine so far so maintain the rage and stay well,Ron.

Thank you all for your thoughts. From what you have all said I guess it is fair to say that a "change" is a bit like we all felt when we came off chemo. I am sure you agree that at that time most of us had reservations about stopping chemo simply because they were "taking away our safety net"....so to speak. I guess this is very much the same.
So..I have to say that even now I dread the tests but am very happy that they came back with NED each time. Maybe I seem ungratefull/selfish but the safety net thing is with me now, just like when stopping chemo. The other thing that really pissed me off was that this new intern cited "unnecessary use of government money". I did not consider that fair as I have paid my medicare levy(tax) for public health treatment and I pay 1/2 the cost of the ultrasounds each visit (about $100)which I am happy to do for peace of mind.
I am probably a bit paranoid but then who wouldn't be, considering back in 1997 they think I was mis-diagnosed for haemharoids when the dx should have been cancer..go figure!It could have been found at stage 1.
In a nutshell I think you have all answered my question and told me what I wanted to hear deep down.
So...I will talk it over with my "regular" gp and my radiology tech, Julie-Anne. She is an expert on ultrasounds and her opinion will be invaluable to me.Like I said..I don't ask many questions here... but ...you wondefull people always come up with the most intelligent and wise answers. Luv you all ta bits!!!!
Ross n Jen

ps..I will tell you next week my decision.

CAMaura · October 2005

kangatoo said:
Thank you all for your thoughts. From what you have all said I guess it is fair to say that a "change" is a bit like we all felt when we came off chemo. I am sure you agree that at that time most of us had reservations about stopping chemo simply because they were "taking away our safety net"....so to speak. I guess this is very much the same.
So..I have to say that even now I dread the tests but am very happy that they came back with NED each time. Maybe I seem ungratefull/selfish but the safety net thing is with me now, just like when stopping chemo. The other thing that really pissed me off was that this new intern cited "unnecessary use of government money". I did not consider that fair as I have paid my medicare levy(tax) for public health treatment and I pay 1/2 the cost of the ultrasounds each visit (about $100)which I am happy to do for peace of mind.
I am probably a bit paranoid but then who wouldn't be, considering back in 1997 they think I was mis-diagnosed for haemharoids when the dx should have been cancer..go figure!It could have been found at stage 1.
In a nutshell I think you have all answered my question and told me what I wanted to hear deep down.
So...I will talk it over with my "regular" gp and my radiology tech, Julie-Anne. She is an expert on ultrasounds and her opinion will be invaluable to me.Like I said..I don't ask many questions here... but ...you wondefull people always come up with the most intelligent and wise answers. Luv you all ta bits!!!!
Ross n Jen

ps..I will tell you next week my decision.

Kanga - The guy sounds like he was just being a cocky **** when he mentioned "unnecessary use of govt money". You, quite frankly, might know more about your disease than he does..... I had someone tell me that I had ADD while I was on chemo; he was a cocky **** as well. Stick with your good sense and Julie-Anne and you will be okay. It helps to have a good tech; I've watched the ulrasounds and one needs a well-trained eye...things can look like mush on the screen. Funny -- your opinion of chemo and the safety net -- I was pretty glad/relieved when I stopped mine; I have much more fear that it damaged other organs while trying to kill some bad cells. And, of course, then a headache sent me thinking brain-tumor for a while. Oh well......All the best to you - Maura

AuthorUnknown · October 2005

I think you should continue the test as often as YOU feel necessary. Especially since they have left the final decision to you. You do not need the worry and stress waiting would cause. It is your body and your decision.

If you were reading this question from another person on this site, what would you recommend to them. That should help you decide.

Just my opinion.

Good luck.

HowardJ · October 2005

Hi Ross,

This one's tough to answer because it's a balance between scientific evidence and patient comfort. I'm a data nerd so I look at the recommendations. ASCO recommendations can be found at this link:

http://www.asco.org/ac/1,1003,_12-002214-00_18-008034-00_19-008039-00_20-003,00.asp?ArticleId=8034&ArticleBodyId=8039&ShowHead=&PageNo=1&cancer_type_id=&state=

Other guidelines are at: http://www.jco.org/cgi/content/full/17/4/1312#TBL31312

Guidelines differ depending on what/who you read but they are guidelines, developed by following patients over time and seeing how quickly reoccurence, if it occurs, happens.

Personally, I have CEAs done every 4 months, with repeat colonscopy and CT due at 1 year (I'm not there yet), and I'm comfortable with this timing. If it weren't for the hemangioma they are following in my liver my doc would not do repeat CTs (not sure I'd be comfortable with that).

Good luck!

Howard

cal79 · October 2005

Hi Kanga,

My follow up regime is check up with a colorectal surgeon every 3 months(with bloodwork, xrays, and possibly scans - to be confirmed), CT and MRI (abdominal and pelvic) every 6 months, and colonoscopy every 12 months. I'm in Oz too, and an ultrasound has never even been suggested as an option. I think that it is ultimately the preference of your treating doctor / surgeon which determines the "recommended" tests. I'm stage 1, and all of the tests are bulk billed so they must be medicare approved (unless there is something they are not telling me!).

Just remember that the doc's who think 3 monthly screenings are overkill are not the ones who have had to live with cancer, so unless you are really comfortable with reducing your screenings maybe keeping the regime would give you peace of mind? Or maybe if you would prefer a different type of screening you could suggest that you reduce the time between tests, but have a different type of test instead (just a thought)? Probably a good idea to discuss your concerns with your own doc who knows you and knows your history...

Good luck with it, let us know how you go.

Cal

kangatoo · October 2005

cal79 said:
Hi Kanga,

My follow up regime is check up with a colorectal surgeon every 3 months(with bloodwork, xrays, and possibly scans - to be confirmed), CT and MRI (abdominal and pelvic) every 6 months, and colonoscopy every 12 months. I'm in Oz too, and an ultrasound has never even been suggested as an option. I think that it is ultimately the preference of your treating doctor / surgeon which determines the "recommended" tests. I'm stage 1, and all of the tests are bulk billed so they must be medicare approved (unless there is something they are not telling me!).

Just remember that the doc's who think 3 monthly screenings are overkill are not the ones who have had to live with cancer, so unless you are really comfortable with reducing your screenings maybe keeping the regime would give you peace of mind? Or maybe if you would prefer a different type of screening you could suggest that you reduce the time between tests, but have a different type of test instead (just a thought)? Probably a good idea to discuss your concerns with your own doc who knows you and knows your history...

Good luck with it, let us know how you go.

Cal

Thanks again guys n gals.Howard..thanks for the link. As soon as I get a mo I will go do some reading.
Hi Cal...never new you were in OZ? I'm in SA about 80klms north of Adelaide CBD at a place called Kapunda.It is possible that my surgeon was very happy with the outcome of surgery and is satisfied that with good margins he got it all. As there were no lymph nodes positive I was lucky I guess and that he did resect a lot more colon/sigmoid than he original thought he would resect, maybe he did the right thing and really did go for "very" clear margins. He seemed very positive that re-occurance chance was minimal. I guess my concerns were more for the fact that the tumour was a 2/3 blockage, did go thru the bowel wall so blood vessels were affected. Anyway, thanks for everyones comments. I will definately talk to Shirley, my gp, and also to Julie-Anne on tuesday. Their opinions will more than likely sway me one way or the other.
Thanks all,
huggs, kanga n Jen

jana11 · October 2005

kangatoo said:
Thanks again guys n gals.Howard..thanks for the link. As soon as I get a mo I will go do some reading.
Hi Cal...never new you were in OZ? I'm in SA about 80klms north of Adelaide CBD at a place called Kapunda.It is possible that my surgeon was very happy with the outcome of surgery and is satisfied that with good margins he got it all. As there were no lymph nodes positive I was lucky I guess and that he did resect a lot more colon/sigmoid than he original thought he would resect, maybe he did the right thing and really did go for "very" clear margins. He seemed very positive that re-occurance chance was minimal. I guess my concerns were more for the fact that the tumour was a 2/3 blockage, did go thru the bowel wall so blood vessels were affected. Anyway, thanks for everyones comments. I will definately talk to Shirley, my gp, and also to Julie-Anne on tuesday. Their opinions will more than likely sway me one way or the other.
Thanks all,
huggs, kanga n Jen

Kanga, I agree that scans can be decreased after 2 yrs of NED... BUT that is something YOUR GP should talk to you about, not some intern kid. AND U/S aren't that expensive (compared to all the other tests). I would continue the U/S until you can read more, and talk to the doc you are most comfortable with.

Nothing about checking your body to keep cancer away is a "waste of time and money". You need to remain your strongest advocate. The docs don't quite understand what being a cancer survivor means.

Stay well and happy. jana

johnom · October 2005

Hi, Kanga and Jen.
I was Stage II as well. I am getting checked by the onc every 3 months and an annual colonoscopy as well as PET scan. I am in my second year. I wouldn't care what they told you, THEY don't have cancer. I would stick to your most comfortable schedule. The fallacy in the "wasting money" argument is it quickly costs ten times more to treat a recurrence than the cheap preventive/diagnostic approach.
'I'm not young enough to know everything.' But I do know that much.

Take care.

John

kangatoo · October 2005

johnom said:
Hi, Kanga and Jen.
I was Stage II as well. I am getting checked by the onc every 3 months and an annual colonoscopy as well as PET scan. I am in my second year. I wouldn't care what they told you, THEY don't have cancer. I would stick to your most comfortable schedule. The fallacy in the "wasting money" argument is it quickly costs ten times more to treat a recurrence than the cheap preventive/diagnostic approach.
'I'm not young enough to know everything.' But I do know that much.

Take care.

John

Thank you Jana and John for our replies. I am off to my clinic tomorrow morning and will talk to my tech. gal and see how she feels about it. She deals with cancer patients of all stages and I am sure that her advice would be interesting.
Cheers and be well, kanga n Jen

what would you do?

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