So what's my best shot?

bluwillo

I see the onc doc in about 10 days. I'm having a few issues....fear right up there! I WANT A SCAN!!!! I've never had one (invasive ductile, estrogen positive, 9 out of 13 nodes positive..that's all I care to remember). I was diagnosed 2 years ago, had masto and did chemo and rads.

What's the best scan to demand? Pet or MRI? I don't want a CAT, already know about the osteoporosis, and my good friend Arthur-itis. I've never asked my doc for any special tests, hell, I don't even know what they look for when they do the blood work before the apt. All he does is poke me here and there and poo poo any complaints I have. I really like him...but this time I don't want sunshine and roses, I want SCIENCE! I see him once every 6 months. I want to know that for now, I'm good. Is that too much to ask (ya, I know it is, but I still want it!LOL!) Selfish much?

mamolady

There are different reasons
There are different reasons to do different scans.

PET is a non discriminant test to look for "hot" spots. It doesn't distinguish between cancer and arthritis. If they see abnormal hot spots they order either a CT or MRI or maybe x-ray. Traci pointed out that it does not see masses in the breast.

CT is good for looking at the organs especially with contrast. It is good for bone too.

MRI is good for vascular and the brain. It is also good for the organs but I think a lot of docs prefer CT for that.

X-ray is usually for bone surveys to look for mets in the bone.

My MO prefers not to do PET because there are a lot of false positives. She only ordered a CT for me prior to starting chemo for staging.
Some docs rely on blood work some order imaging. If you really want imaging, PET/CT combo is probably the most bang for your buck. Talk to your oncologist though, he may have different a opinion.

Cindy

grams2jc

I'm having ct
I have rheumatoid arthritis so a pet scan isn't a good fit for me and I had a bone scan before I started chemo...don't know if that will be repeated. My onc had a CT done in April and another scheduled for October it shows above clavicle, chest and liver (80 to 90% of) and then my gyno ordered a pelvic ultrasound to be done in a couple of weeks. My onc doesn't like the tumor marker blood tests so not doing those.

Good luck with your doc,

Jennifer

Lighthouse_7

grams2jc said:

I'm having ct
I have rheumatoid arthritis so a pet scan isn't a good fit for me and I had a bone scan before I started chemo...don't know if that will be repeated. My onc had a CT done in April and another scheduled for October it shows above clavicle, chest and liver (80 to 90% of) and then my gyno ordered a pelvic ultrasound to be done in a couple of weeks. My onc doesn't like the tumor marker blood tests so not doing those.

Good luck with your doc,

Jennifer

I had CT of chest and bone
I had CT of chest and bone scan before surgery chemo and rads. My doc said she had to check all possible areas that it might have traveled because she didn't want to start treating me backwards. If that makes sense how I said that.
Because they saw enlarged lymph nodes in chest I have had yearly CT's since. I also had a biopsy done of the chest nodes. All is ok but I think I'll stop the CT's every year since they haven't found any change. My doctor doesn't use Pet or tumor markers either because of the false readings sometimes. When I complained of back pain I had another bone scan but only because I said something. When I go now I get poked and prodded but that's about it except for yearly mamma's.
Hope this helps,
Hugs,
Wanda

TraciInLA

Lighthouse_7 said:

I had CT of chest and bone
I had CT of chest and bone scan before surgery chemo and rads. My doc said she had to check all possible areas that it might have traveled because she didn't want to start treating me backwards. If that makes sense how I said that.
Because they saw enlarged lymph nodes in chest I have had yearly CT's since. I also had a biopsy done of the chest nodes. All is ok but I think I'll stop the CT's every year since they haven't found any change. My doctor doesn't use Pet or tumor markers either because of the false readings sometimes. When I complained of back pain I had another bone scan but only because I said something. When I go now I get poked and prodded but that's about it except for yearly mamma's.
Hope this helps,
Hugs,
Wanda

I trust my oncologist on this one
I'm 18 months out of treatment (bilateral lumpectomies, chemo and bilateral radiation). I see my oncologist every 3 months (because I'm on Tamoxifen). He does blood work for tumor markers, a thorough (and I mean THOROUGH) poking and prodding of my lymph nodes, liver, breasts, and stomach/pelvic area, and wants to know about any changes in my health or how I'm feeling.

In his opinion, there's no need to do any type of scans (except for mammograms, since I still have breasts), unless/until I have any symptoms -- which he feels would show up in the blood work, his exam, and/or symptoms that I would notice.

To be honest, I trust his judgement, and have had no scans at all since completing treatment. In my opinion, MRIs and PET/CTs have too many false positives, and I don't want to put myself through all that anxiety and unnecessary biopsies if I'm not having any symptoms.

In my case, I'm lucky -- my oncologist is a great listener, and never "poo-poos" any of my complaints. If your oncologist doesn't take you seriously, find another oncologist.

Just my opinion for myself, for what it's worth.

Traci

bluwillo

TraciInLA said:

I trust my oncologist on this one
I'm 18 months out of treatment (bilateral lumpectomies, chemo and bilateral radiation). I see my oncologist every 3 months (because I'm on Tamoxifen). He does blood work for tumor markers, a thorough (and I mean THOROUGH) poking and prodding of my lymph nodes, liver, breasts, and stomach/pelvic area, and wants to know about any changes in my health or how I'm feeling.

In his opinion, there's no need to do any type of scans (except for mammograms, since I still have breasts), unless/until I have any symptoms -- which he feels would show up in the blood work, his exam, and/or symptoms that I would notice.

To be honest, I trust his judgement, and have had no scans at all since completing treatment. In my opinion, MRIs and PET/CTs have too many false positives, and I don't want to put myself through all that anxiety and unnecessary biopsies if I'm not having any symptoms.

In my case, I'm lucky -- my oncologist is a great listener, and never "poo-poos" any of my complaints. If your oncologist doesn't take you seriously, find another oncologist.

Just my opinion for myself, for what it's worth.

Traci

Thanks Ladies!
For all the advice. I will mull it over, make MY decision, and decide how to present my plan to my doc. Frankly, at this point, I don't really care what he's "comfortable" with..I'm the patient and I have a say.

Rague

In the 17 days between DX
In the 17 days between DX and starting A/C I had a CT, and MRI, a bone scan and a PET scan along with a biopsy of a spot along my jaw that showed 'hot' but came back fine. Since then I've had a CT the day of the last Taxol as Rads were starting the next week and Rads Dr wanted it. After Rads my back started hurting (there's been arthritis there for years but never a problem) so my PA ordered a bone scan to be sure it was 'just' the arthritis - it was; a year from DX had a mammo; last Nov I got horrendous pain around and behind my right eye that pain meds would do nothing for - Dex would knock it out though so she had me have another MRI - clean again so it was decided that the pain was from a nerve that had gotten 'aggravated' for some reason - haven't had any pain in the area since; in June had another bone scan as was having more back pain - again just the arthritis; had bone density test in June and it showed that osteoporosis had raised it's head (to be expected with my family history and early natural menopause); Wed I have the 2 yr mammo. I see Chemo Dr Aug 23 for 6 mth check up and all he wants done is blood work. I don't want to have any more scans than my Drs suggest and the only ones either (only had 2 Dr's left - my Chemo and my PA - Rads and Surgeon do not want to see me again as long as I see my PA every 6 months - fine with me) have suggested has been for a particular reason. I don't want any more radiation than I have to have - just how I see it.

You and only you can decide what is right for you.

Susan

Annette 11

I see you have alot of good
I see you have alot of good information here. I had MRI and Pet scans. My onc. likes pet scans. I will probably get one per year for the first 5 years but I'm not sure. I had bil. mast. no nodes involved.
Talk to onc. about your feelings. I am surprised that they never gave you a scan especially with positive nodes. Tell him you want tests!
Hugs,
Annette

Sunrae

Annette 11 said:

I see you have alot of good
I see you have alot of good information here. I had MRI and Pet scans. My onc. likes pet scans. I will probably get one per year for the first 5 years but I'm not sure. I had bil. mast. no nodes involved.
Talk to onc. about your feelings. I am surprised that they never gave you a scan especially with positive nodes. Tell him you want tests!
Hugs,
Annette

Bluwillo, my dx is about
Bluwillow, my dx is about the same as yours, with 11 positive nodes, stage 3A, had masectomy, chemo, rads and now on Femara for 5 years. Like Traci, I trust my onc to make the right decisions about tests, etc. Before treatment, I had ct scan, bone scan, ultrasounds. My onc doesn't have me do Pet scans because of too many false results. I only have a mamo once a year on the remaining breast. If I complain she does listen to me and will order the appropriate tests. I just had a bone density test revealing osteopenia, which I already knew about for several years. Your dr should listen to you and not turn off any of your complaints. If you feel like you need certain tests, question him about them. Ask why he doesn't want to do them. After all, its your body and your life.

LoveBabyJesus

TraciInLA said:

I trust my oncologist on this one
I'm 18 months out of treatment (bilateral lumpectomies, chemo and bilateral radiation). I see my oncologist every 3 months (because I'm on Tamoxifen). He does blood work for tumor markers, a thorough (and I mean THOROUGH) poking and prodding of my lymph nodes, liver, breasts, and stomach/pelvic area, and wants to know about any changes in my health or how I'm feeling.

In his opinion, there's no need to do any type of scans (except for mammograms, since I still have breasts), unless/until I have any symptoms -- which he feels would show up in the blood work, his exam, and/or symptoms that I would notice.

To be honest, I trust his judgement, and have had no scans at all since completing treatment. In my opinion, MRIs and PET/CTs have too many false positives, and I don't want to put myself through all that anxiety and unnecessary biopsies if I'm not having any symptoms.

In my case, I'm lucky -- my oncologist is a great listener, and never "poo-poos" any of my complaints. If your oncologist doesn't take you seriously, find another oncologist.

Just my opinion for myself, for what it's worth.

Traci

Traci -- We're pretty much
Traci -- We're pretty much the same with our Dr.'s opinions. I keep wanting o have scans, but she refuses to. She will follow me up with blood work.

VickiSam

Sunrae said:

Bluwillo, my dx is about
Bluwillow, my dx is about the same as yours, with 11 positive nodes, stage 3A, had masectomy, chemo, rads and now on Femara for 5 years. Like Traci, I trust my onc to make the right decisions about tests, etc. Before treatment, I had ct scan, bone scan, ultrasounds. My onc doesn't have me do Pet scans because of too many false results. I only have a mamo once a year on the remaining breast. If I complain she does listen to me and will order the appropriate tests. I just had a bone density test revealing osteopenia, which I already knew about for several years. Your dr should listen to you and not turn off any of your complaints. If you feel like you need certain tests, question him about them. Ask why he doesn't want to do them. After all, its your body and your life.

Excellent .. descriptions, background and
information -- Kindred Spirits!

We need to fell comfortable with our Oncologist, and our 'after care'.


Vicki Sam

disneyfan2008

I think I only had one mri
I think I only had one mri just prior to surgery, no cat or pet...

@ 3mths blood and office visits & Mammos (alternate both sides and then the ONE side)

Denise

dbhadra

disneyfan2008 said:

I think I only had one mri
I think I only had one mri just prior to surgery, no cat or pet...

@ 3mths blood and office visits & Mammos (alternate both sides and then the ONE side)

Denise

I think it's important
To work with your oncologist to get whet you need to feel comfortable. I'm glad to see all the information here since I would most likely be having a similar discussion with my oncologist...what now in terms of check-ups/scans when I see him after completing radiation. I believe he will give me another PET scan in three months as I am considered at high risk for reoccurrence. I had a PET scan for my initial staging as well, back in December . Not sure how he feels about other tests like tumor markers, bloodwvork, etc

Please let us know what you and your doc decide.

Laura