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Upcoming Scans

Posted: Fri Sep 29, 2017 2:53 am
by Swirdfish
Hello Fellow Warriors,

So I've got my very first 6 monthly scans very shortly, flying out of work early for these. Initially my ONC said that they just wanted to ultrasound my liver. I argued with him about this cancer going to the lungs first etc etc, so under my wishes he put me in for also a chest x-ray.

Usual blood test including CEA which isn't a good indicator for me.

What about local recurrence? Is the above a good means of detecting early or should I be more aggressive?

Is there anything else any of you would also push for to keep this nasty beast at bay.

Best Wishes

Fish

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 5:48 am
by AbbyDoo
To me it sounds like there slacking,
I get a ct scan with contrast every 6 months. I was getting blood work done every 3 months for the first year.
I would really push for a ct scan.. My first scan after chemotherapy showed I had pulmonary embolism that scan probably saved my ass.

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 6:25 am
by JJH
Swirdfish wrote: ...Is there anything else any of you would also push for to keep this nasty beast at bay?

In the first 2 years post-treatment, I would push for an emphasis on healthy living, in particular the three pillars of survivorship: (1) exercise, (2) diet, and (3) stress reduction. These are the main tools for keeping cancer at bay, i.e., on prevention of further cancer.

When you focus on scans, x-rays, tumor markers, etc., you are not focusing on wellness. You are focusing on illness and disease. What you want to do, instead, is to put your main emphasis on setting up and maintaining the healthiest living plan you can come up with so that you minimize your chances of ever having another cancer

There are several websites that outline various plans for this, and they are usually found under the rubric "survivorship".

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 12:30 pm
by CRguy
Hey Fish

I am kind of back at the same point you are getting to.
I am not scheduled for any CTs ( I always had Chest-Abdomen-Pelvis numerous times as Stage IV ) because I am back with my family doctor and outta' the big center.
The plan we have concocted, which may shed some light for your situation, Summary :
( and you can read all the details in the signature link to my ongoing update topic )

chest and abdominal xrays ( multiple views ) and abdominal / liver ultrasound
continued general blood tests including CEA ( not a marker for me ) CA19-9, LDH, liver enzymes and whatever she thinks needs checking
OR I ask her for.
(( I have a VERY good doctor who is always supportive of my plans to be aggressive in follow up ))

Now you are not Stage IV = good for you !
BUTT I think your best chance of staying ahead of the game is to be proactive and push your docs for suitable imaging / monitoring.

I would think your docs should be on board with increased monitoring for the first 3 years at least.
If not ... find another doctor JMO.

BTDT and that is what I DID !
after my lung met was first missed on CT .... I did xrays / ultrasounds / CAP CT scans and found a new family doctor and new Onc.

My philosophy is very simple --->>> My life = MY DECISION !!!!

Best wishes
CRguy

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 2:42 pm
by SweetC80
Even before my mother was stage IV she was always given a full CT scan, and obviously now that she is they are. She was often told that she had just as much risk of a pelvic recurrence as finding liver or lung mets. She did have a very low tumor that broke through the anal wall and a fisure to her uterus, so I don't know if the fact it basically touched so much made that more of a concern for her over other rectal cancer patients or if it is generally an increased risk.

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 4:33 pm
by Swirdfish
Thanks all.

I wouldn't say I'm focused on the scans but I'm trying to establish a suitable for me method of determining if im still NED that i think is sufficient enough.

For some reason I'm not happy with what they have in place. I think it's lacking substance to say.

Also I eat very well and exercise majority of the week. Cardio and weights.

I will approach my ONC with the above knowledge or my surgeon for consideration.

Rectal cancer has a high local recurrence rate so why dont they scan for it?

Seems unsuitable to me.

Will CT scans every 6 months be too much radiation? Cant use MRI. I've already had a good fair share of radiation.

As CRguy said maybe imaging at different directions.

Stress isnt an issue with my life even as an engineer. Been in the job along time now. 8)

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 4:38 pm
by Swirdfish
CRguy wrote:Hey Fish

I am kind of back at the same point you are getting to.
I am not scheduled for any CTs ( I always had Chest-Abdomen-Pelvis numerous times as Stage IV ) because I am back with my family doctor and outta' the big center.
The plan we have concocted, which may shed some light for your situation, Summary :
( and you can read all the details in the signature link to my ongoing update topic )

chest and abdominal xrays ( multiple views ) and abdominal / liver ultrasound
continued general blood tests including CEA ( not a marker for me ) CA19-9, LDH, liver enzymes and whatever she thinks needs checking
OR I ask her for.
(( I have a VERY good doctor who is always supportive of my plans to be aggressive in follow up ))

Now you are not Stage IV = good for you !
BUTT I think your best chance of staying ahead of the game is to be proactive and push your docs for suitable imaging / monitoring.

I would think your docs should be on board with increased monitoring for the first 3 years at least.
If not ... find another doctor JMO.

BTDT and that is what I DID !
after my lung met was first missed on CT .... I did xrays / ultrasounds / CAP CT scans and found a new family doctor and new Onc.

My philosophy is very simple --->>> My life = MY DECISION !!!!

Best wishes
CRguy


Thanks bud.

I'll mention your outline and try get a better response.

Re: Upcoming Scans

Posted: Fri Sep 29, 2017 8:26 pm
by mypinkheaven
JJH wrote:
Swirdfish wrote: ...Is there anything else any of you would also push for to keep this nasty beast at bay?

In the first 2 years post-treatment, I would push for an emphasis on healthy living, in particular the three pillars of survivorship: (1) exercise, (2) diet, and (3) stress reduction. These are the main tools for keeping cancer at bay, i.e., on prevention of further cancer.

When you focus on scans, x-rays, tumor markers, etc., you are not focusing on wellness. You are focusing on illness and disease. What you want to do, instead, is to put your main emphasis on setting up and maintaining the healthiest living plan you can come up with so that you minimize your chances of ever having another cancer

There are several websites that outline various plans for this, and they are usually found under the rubric "survivorship".





JJH, maybe you could complete your signature. It would be interesting to know your stage, location, treatment, etc.

Re: Upcoming Scans

Posted: Sat Sep 30, 2017 3:33 am
by Swirdfish
JJH wrote:
Swirdfish wrote: ...Is there anything else any of you would also push for to keep this nasty beast at bay?

In the first 2 years post-treatment, I would push for an emphasis on healthy living, in particular the three pillars of survivorship: (1) exercise, (2) diet, and (3) stress reduction. These are the main tools for keeping cancer at bay, i.e., on prevention of further cancer.

When you focus on scans, x-rays, tumor markers, etc., you are not focusing on wellness. You are focusing on illness and disease. What you want to do, instead, is to put your main emphasis on setting up and maintaining the healthiest living plan you can come up with so that you minimize your chances of ever having another cancer

There are several websites that outline various plans for this, and they are usually found under the rubric "survivorship".


Appears to be a very basic website with generic information. Perhaps I didn't look at it long enough. I already do majority of it.

Re: Upcoming Scans

Posted: Sun Oct 01, 2017 8:15 am
by DarknessEmbraced
I would push for scans too. I have been getting yearly ct scans and blood tests every 3 months since my surgery in 2014. Good luck!*hugs*

Re: Upcoming Scans

Posted: Sun Oct 01, 2017 3:55 pm
by Lee
I believe you have been given some great advice, butt just wanted to wish you "good luck" with your upcoming scans.

May you ALWAYS reside in NEDville,

Lee

Re: Upcoming Scans

Posted: Sun Oct 01, 2017 4:32 pm
by Swirdfish
Thankyou all.

Thanks Lee.

It's tomorrow. I'm not too worried at all I think it's all going to be a big thumbs up.

Yes ill still be getting my yearly CT scans. I just think the 6 monthly scans are to say abit light.

Thanks all.

Good luck.

Re: Upcoming Scans

Posted: Fri Oct 06, 2017 3:24 pm
by dianetavegia
Next week will be my first time in 9 years not to have CT or CT/MRI or Pet scans every 6 months or sooner. I'm going to a once a year scan schedule with CEA twice a year. People will say 'CEA is not a good indicator for me' because their CEA was low, but that's not correct. My CEA went to 4.4, 6.4 six months later and then 8.4 (day of surgery) when I had a liver met that was only 1.5 cm. I consider that a good indicator AND lower CEA's tend to be found in people with less aggressive disease.

Re: Upcoming Scans

Posted: Fri Oct 06, 2017 3:39 pm
by susie0915
dianetavegia wrote:Next week will be my first time in 9 years not to have CT or CT/MRI or Pet scans every 6 months or sooner. I'm going to a once a year scan schedule with CEA twice a year. People will say 'CEA is not a good indicator for me' because their CEA was low, but that's not correct. My CEA went to 4.4, 6.4 six months later and then 8.4 (day of surgery) when I had a liver met that was only 1.5 cm. I consider that a good indicator AND lower CEA's tend to be found in people with less aggressive disease.

How are you feeling about going to yearly scans? It's a good thing because it means you are doing well and cancer free, but the scans can give peace of mind. I have my six month scan in a week. Always start to get a little anxious, so when I get to yearly scans will probably be good for me. Congrats on graduating to yearly scans. Does your doctor consider you cured?

Re: Upcoming Scans

Posted: Fri Oct 06, 2017 8:11 pm
by Swirdfish
Well I did the ultrasound and xrays but for the life of me I can't stop myself asking them if they saw anything. However I'm not too worried. I'm positive its all good come monday when i see the onc