what are usual tests done post chemo, surgery & radiation...

Chutney

to determine whether cancer is "gone" or littler or ????  I've been thru chemo, had a mod rad mastectomy & nodes out, finishing radiation (6 more) - when I asked how do we evaluate my status after the last rad treatment, he said something like "we've determined that 28 + the 5 boosters is enough."  huh?  I've been MRId, PETscanned & CTscanned into oblivion and now they just send me out the door with "good luck" & a bottle of Femara?  yeah, go see the Onc in 3 weeks, but NO post treatment evaluation? 

What have you all had done at the "end" of treatment (not counting AI or tamoxifen)??? This seems sooooo weird! 

KerryMac

I'm at the same treatment point as you (I finish rads this week) and no scans for me either. It is standard of care for most Oncs. Some will do routine scans, most won't. Apparently any problems will "present themselves." I think the thinking is that Stage 4 is no longer considered curable, so early detection won't change the eventual outcome. Personally I fins scans stressful, but I wouldn't mind a yearly check....

reen

I was told the same thing.  Nothing is done until there are symptoms.  What???  Isn't that a little too late?  I've never had a bone scan and ask about it every time I see a dr.  Well they just blow me off.  I'm still going to keep pushing for it. 

Chutney

Keep pushing, keep asking....I lost track of how many times I asked.  Finally, got Vit D levels drawn and bone scan.  Vit D was way low; bone scan was okay - but maybe with 5 years of Femara in my future.....I expect the "side" effects to be dealt with.  I am very angry with the medical 'system' that blows women's concerns off.  I've stopped worrying about being "nice" too. 

reen

Does anyone know what the difference is between a PET scan and a bone scan?  Can the PET find cancer in the bones?

ddlatt

i finished treatment today. i have a follow-up appt with my oncologist one month from now, where he'll order tumor marker and complete bloodwork. then i'll see him and have the same tests every three months for the next year. then the same every four months for two years. my UCSF med onc said he does not order any scans unless a problem comes up. he said the bloodwork and tumor markers will indicate if there's a problem.  personally i don't want any more radiation or invasive tests than absolutely necessary. 

Chutney

as I understand it: bone scan only measures density (or whether porous) of the bones - no cancer issue in a bone scan.  PET scan - dark areas indicate "new cell" growth which is often cancer BUT not always

Chutney

hi -

thanks for that info - I don't disagree with you regarding additional radiation, scans, invasive - and personally - I have had quite enough.  However,  I REALLY don't get no scan, no bloodwork, no nothing.  How could they define anything down the road as a 'recurrence' if we don't know what is left on my chest wall and lymph nodes now (if anything of course).  Waiting for more symptoms?  Hello.....this is ridiculous.  What?  they think I'm going to go thru this treatment again (and, don't forget the $200,000) - no no no. 

My decision re Femara is fairly dependent on my status now.  I truly don't get this.....if no one scans or tests post treatment, how the heck can they say whether it has "recurred" or is just still there and bigger (or elsewhere) later?  This makes no sense to me.

nelia48

I'm so glad I was not the only person who had "detachment" issues when done with treatment!!!!!  I thought I was crazy or something.  I actually cried when I went out the door, thinking I should be so happy and celebrating.  Before I started any treatment, they did a bone scan, a chest xray, and an MRI.  Then I did chemo first, then surgery.  After the mastectomy, I got a PET scan.  When they do a PET scan, they do a CT scan first -- that's the first pass through the "tunnel".  Then they do the PET scan.  The CT scan shows the bones, the PET scan shows the rest of everything.  They can line the two up somehow.

After my radiation, it was like "See Ya" as I went out the door with my Arimidex.  I remember asking my oncologist, "Is this it?"  And he said, "Yes, go enjoy your life! I'm here if you need me or think something's wrong."  I never felt so alone as I did in that moment!  It seemed like years before my 6 week appointment.  My 3 month appointment is coming up in two weeks.

I did go in last week because I found a lump at the mastectomy site. It was hard, and I just didn't know what it was.  He checked me out completely, did blood tests, etc.  But he wasn't sure about the lump, so ordered a chest xray.  That came back with something suspicious, so he ordered another PET scan.  So I do know that if there is any doubt or question, they will double check it. 

I haven't heard anything from them about that PET scan, so that's good news.  They only call you if it's bad news!!!!  I hate that part!

My problem is, I don't know when something is suspicious or serious.  Every ache and pain is a panic for me!  How do I know if something is a side affect of the ARimidex or a sympton of a brain tumor, or bone cancer, etc.?????  No, I don't want a million scans, but I can't believe after all this research for all these years, that it is still a hit and miss, "let us know if something comes up" type of thing!  These follow up visits where all you get is "How are you doing?" are NOT very reassuring to me at all!!!

thegoodfight

nelia,

I am suffering all the same feelings you describe.  I see you are in Florida also.  Do you go to Florida Cancer.  I do and I am very happy with my onc, but I too feel like now I am waiting for the other shoe to drop.  I had a CT Wednesday but of course no results yet.  I expect I will hear on Monday and will call if I haven't.   This is my big "check up" month.  I am seeing my internist, my onc and the breast surgeon for my current three month rechecks.   I am hoping for NED so that maybe I can start to believe that I will be okay.   Also having an endoscopy next Friday (another story) which would show if anything is going on in that area.  I have planned to go to Philly the last week of July for a visit with my grandbaby (13 months) and hope it will be a celebration of all good medical results.

I  thought the surgeries, chemo and radiation were the tough part.....................not so............this is the tough part for sure.

nelia48

Thegoodfight, I do go to the Florida Cancer Institute in Hudson.  I'm happy with my onc, too!  He's not the best with "bedside manners" and is straight up and to the point about things.  But I feel he saved my life as I was in really bad shape when I started with him.  Be sure to call about your test results.  I hate that when they don't call if there's nothing wrong.  Hope you have a great visit with your family!  It should be great "therapy" for you!  You are right --- this part is the toughest, and I thought it was supposed to be the best part!

Leah_S

It seems that standard of care is to wait until there are symptoms before doing scans. I'm not done with treatment yet (just started rads) but will have checkups every 3 months afterwards since I'll be on tamoxifen. I'm ok myself with no scans, since I also agree that I don't need even more radiation.

Just to clarify - a bone scan is to check for cancer or other abnormalities in your skeleton. A radiactive tracer is injected by IV, and an hour later the scan is done (I  think by gamma camera but not sure). A bone DENSITY scan checks for porousness of bones - that's how osteoporosis is diagnosed. Haven't had one yet so don't know the procedure.

Leah

LeggyJ

No scans, just a 4mon. visit with the Onc. and a 3 mo. visit with my surgeon's NP...