No PET or CAT scans ordered?

05-27-2008, 07:03 PM

I have seen all three of my oncologists lately --surgical, radiation and medical. All say I will not have or need a scan of any kind unless I am experiencing lingering pain. Is this typical for a stage one, Her2 +++ patient? I guess I want to KNOW I have NED. Maybe the Dr.'s assume I am as I had no node involvement and my tumor was under 2 cm.

Thanks,
Dana

DanaRT · 05-27-2008, 07:08 PM

Sorry. I forgot to "log in" on this site. The above post is from me.

Dana

Mary Jo · 05-27-2008, 07:57 PM

Hi Dana,

As you can see from my signature, I was a stage 2B, her2 +++, 1 microscopic cell in 1st sent. node and a 4 cm tumor and yes, that is the "norm" as far as scans go. Most oncs. strictly go by the "if symptoms warrant a scan" type of treatment. A good onc. however, will listen to the patient, and if anxiety is high and a scan needs to be given for peace of mind, they will oblige. Some patients get them on a regular basis also but I find that the majority of oncs. don't do regular scans unless symptoms warrant.

For me, it's a good call. But that's me. Even though I often wonder what's going on "in their" to put myself through regular tests would drive me WILD. The stress would be more than I could handle. However, if it's something you feel you need, then I'd demand it. Nothing beats peace of mind.

God's Peace and Love surround you .....

Mary Jo

Joan M · 05-27-2008, 08:50 PM

Hi Dana,

I would agree with Mary Jo that most oncs go by whether you have symptoms, especially for a stage 1 diagnosis.

However, since you are ER negative and HER2 positive and had grade 3 cancer, it might be a good idea to start with a basic CT scan of the chest, abdomen and pelvis every six months for at least the first two years (this scan would be done as one scan, but the report would come back in three parts).

It also depends on how you feel about following up.

Best, Joan

chrisy · 05-27-2008, 08:52 PM

Well said, Mary Jo and Joan.

Regular CT and PET scans are not "standard of care" for follow up on early stage cancer. Not only are they expensive tests, but they expose you to extra radiation. They can also cause more anxiety than they relieve, particularly PET scans as a lot of things (not at all cancer related) will "light up" on a PET scan.

That said, if your level of anxiety is high, you may want to push for more aggressive follow up with at CT scan.

DanaRT · 05-28-2008, 03:45 AM

Mary Jo, Joan and Chrissy,

Thank you for responding. It seems to be standard care around the country for stage 1 cancers so I am going to let it go for a while. My medical oncologist did tell me CT scans light up many false positive putting the patient through unneeded biopsies.

The only pain I have is in my hips from sitting at the computer leaning forward too long!

I do take Ambien almost every night because I can't sleep and worry most. I pray much of the time for the women on this board and others. It's as if I NEED to keep praying then I am sleep deprived.

Take care and many hugs,
Dana

Mary Jo · 05-28-2008, 04:12 AM

Hi Dana,
I hear ya! Trust me though, in time, it does get easier. You will come to trust your body again - somewhat anyway - and sleep will become easier.

Love to you today "sister"

Mary Jo

cath52 · 05-29-2008, 05:02 PM

Dana,
I have had pain in my right leg and both hips since finishing treatment last July. I have complained everytime I saw my Dr. and he has finally ordered a bone scan to be done in Sept. right before my next visit. If it really bothers you keep complaining. If only for your peace of mind, the Dr. should do it.

DanaRT · 05-29-2008, 06:35 PM

Hi Cath52,

You're almost local--Marion, IN!! Where do you get your treatments?
Thank you fro responding. I will push the issue if my hip pain continues. For now I am working on weight loss and exercise. My hip only hurts when I sit too long.

Take care,
Dana

Sherryg683 · 05-31-2008, 08:00 PM

Did they do any scans at all on you when you were first diagnosed? I think I would at least want a set of scans done to make sure everything came back clean and that nothing had gotten out by means of the bloodstream. If that initial scan came back clean, I would be Ok with not having any other scans..that being I was diagnosed with early stage bc. I just think it is our duty and right to be active in our care and if a set of scans would ease your mind, then you should get them. When my brother was diagnosed with melanoma, his lymph nodes were clean. They later found out it had spread by way of his bloodstream. Not much they could have done either way in his case but that's not the case with BC.