No tumor marker tests?

Ihopeg

Hi Ladies,

 I just got back from seeing my MO for my yearly visit. This is only the second time I am seeing her. I expected to have blood drawn for tumor markers. The MO said that she doesnt draw for them because they have only been proven to show if chemo is working for metastasis, not to see if there is a recurrence. My dexascan was normal, so no zometa, done femara, no tamoxifen, no metformin. She told me about a vaccine trial at Sloan Kettering, but then realized I had melanoma so no go on that. I said, I have no defense against recurrence and she said that I dont need any since I am NED. What are your thoughts ladies? I am seriously considering going to yet another MO. Thanks in advance... 

TectonicShift

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clariceak

I would be concerned.  I believe 3c requires more strigent monitoring and measures to help prevent reoccurance.  My onc said I will be on femera "indefinitely" and sees no reason to stop it at the aribitrary 5 year mark.  I have tumor marker tests every six months .  As you have seen on the boards, while tumor markers are not accurate for everyone, if they show a constant upward trend it is worth investigating.  Diana had one met which makes her case much easier to treat because she was monitored with the tumor marker test despite being 10 years out.  I also have a chest ray once a year.

My onc would not prescribe metformin, although she had nothing against me trying it.  My primary doc wouldn't either so I'm ordering it from Canada.

I'm 3C as well, and I would be definitely looking for a onc who was willing to watch me more closely. 

Ihopeg

Thanks for your input fellow 3cers! I think I will go to Lankenau Hospital where Dr. Weiss practices and see what they say. Ill keep you informed. 

Momine

ihope, I am with the reast of the gang. My doc uses tumor markers. They are not perfect, and you can get false positives (happened to my mom once and she almost died from fright), but they can also work as an early warning system.

Besides, with ILC, I think it makes sense to continue follow-up monitoring 10 years out instead of the usual 5. I have also seen some docs using tamox after femara, although that seems a little weird.

Let us know what the next doc has to say. 

fredntan

I was going to post similar Q. I have had my 2nd quarterly check from MO. I am starting to wonder why go. No bloodwork.

I had to ask for the bone density test. Hejust feels my lymph nodes. Asks me how i am doing. And thats it. Said no to metformin. No clinical trials.



Where is this dr weiss at? Is he reallygood? I can fly about anywhere. Check out corporate angels forcomplimentary flights to appointments

fredntan

I just googled her. She is my hero. She founded this ver board that i have relied on for support this whole year with bc

karody

My oncologist doesn't do them either, though she does do a CBC, CMP each quarter.  I am on Arimidex and get Zometa infusions due to osteoporosis.

fredntan

Mine said he doesnt do them since such and such board doesnt recommend them.i am beginning to wonder why i go there. Can anyone reccomend top medical oncologist in the northeast? I am in Va,



All mine does is some vitals, some questions, a physical exam, and i am out the door

sewingnut

The next time you go to your family Dr for bloodwork ask for a tumor marker test. I also took in studies to my onc for the simvastatin. She didnt care if I wanted to use it. Showed the family Dr the same studies and she wrote the rx and is doing the followup. I guess its just a case of open communication and Dr's working together. I'm IIIA and see my onc every 6 months.

pupmom

I'm Stage II so maybe I shouldn't post here but I would like to add my 2 bits. I see my MO every 3 months and always get the TM test. If you want them you should demand them. No, they are not totally reliable but if metastasis is caught early, the chances of long term survival are much better.

ali68

My BS said she doesn't do it, I see my onco next month and will ask to have it. I'm stage 3 but over here they don't do a, b or c. So if I'm stage 3c I would want the test I don't know if I am.

NancyD

I was only a IIIA but my bi-annual onc visits always include blood tests, if only to check my other systems. I know he does the CA 27-29, as that has been topic of discussion a couple of times, once because it was slightly elevated at the end of chemo (we suspect tumor flare), and a second time because I asked for the results which are not routinely given.

But I agree with the proponents of continuing some kind of AI. I'm told they all work slightly differently, so it seems you would start to cover a different base of hormone suppression with aromasin or arimidex, or even tamoxifen. SE from each can be the same or different with each one (it's a crap shoot), but if you tolerated the Femara well, why not lobby for another of the AI's? Really, it's no skin off your onc's nose, but it may mean your life!

fredntan

I guess I need to start looking for anther MO. I get so tired of telling him what to do. Then of course he doesnt listen. He said he doesnt do them because he says they have some false positives that put me through unnessary scans and anxiety. I feel though if i wait until symtoms start we arewaybehind the game

ali68

I agree with what you have said. If we want the tests we should have them.

Denise-G

My MO is kind of a big deal in the world of Oncologists - he has worldwide credentials.  He isn't big on tumor markers or scans as he said symptoms present themselves soon enough.  For me, I HATE scans so I prefer his style of doctoring. 

I guess it is because my grandmother who was supposed to die at age 65 and lived to be 92 always told me "Don't go looking for stuff."  LOL!   Funny what sticks with us even now and even with what I've been through with Stage 3A.

But if I was from the other frame of thought and wanted scans and tumor marker tests, I would find an MO that did them.  I believe you ought to be in control and have the kind of care that YOU WANT!! 

fredntan

Thanks Denise

I want them. But I dont

HLB

I was stage 2 in 2004 and my onc had done the ca27-29 ever since then. They were always in the 20s for 6 yeats. Then in April they went to 77. He told me about it in July and we did dcans and found four tiny spine mets. If he waited for symptoms, who knows how long it would have taken? By then I would have pain from cancer eating holes in my spine! Some people don't like the anxiety but if you want them you should find someone to do them. I would have more anxiety doing nothing but waiting for symptoms. Sometimes I wonder if they just figure we are incurable if we get mets so who cares when they are found. My insurance gave me a hassle about it one time and he wrote a letter. The standard was not to do them because they don't prolong survival but he doesn't agree with that due to all of the things that can be done for mets now. Also, bone only is supposed to have more prolonged survival sometimes, and if I had waited for symtoms it may have gone to the liver! I feel good about finding these mets early and getting started on treatment.

I am off to look up simvastin. I asked about metformin but he wouldn't give itto me. Maybe after the results are in. He's pretty by the book that way, but I plan on looking elsewhere.

clariceak

It's a personal choice.  Some oncs believe that tumor tests are unreliable and "symptoms present themself soon enough".  There are so many women who had little or no symptoms and then presented with multiple mets.  Apparently HLB is an example of the benefits of continuing testing after the magical five year mark.

I'm stage IIIC.  Testing doesn't create anxiety for me, because I would much rather get ahead of the cancer should it come back.  I can see how it would be different for other women with less risk of reocurrance. 

Although oncs will say finding mets early doesn't necessarily improve your lifespan, I wonder if it improves the quality of your life. It seems that a few mets in one body system can be treated with AIs or radiation.  At MD Anderson, a woman presenting with a few mets may be treated with curative intent. 

I don't obsess over every ache and pain.  I've gone through chemopause, I live in a wet climate and aching bones are a part of life.  In a way, tumor testing  makes me less anxious.  It is reassuring to have the good results come in, and to know it is a potential early warning system.

pupmom

HLB, have you ever  had your cholesterol checked? If not, you should have you Primary Physician do it. If you have elevated cholesterol you can get a script for Simvastatin. Not hoping you do, of course, but it is something you might look into.