post treatment tests?

skoolmom · 11-05-2006, 03:20 PM

I am done with chemo and radiation. In Jan. I will be done with my Herceptin (24 doses). My onc tells me he isn't having me do anymore pet, bone or cat scans or anything if I'm not having any problems. He tells me that the cancer is gone with the surgery,chemo and radiation. He also hasn't done tumor markers you guys have talked about he feels not accurate. He has done muga scans frequently though. What has everybody else had done when treatment was done to tell you that you are cancer free? Should I also be worried that I'll be done with Herceptin? I know the pet scans are expensive but shouldn't I be demanding one for at least a piece of mind that there are no mets? I had my first mamogram since dx and it was fine. I am one year from dx on Oct. 26 and one year from surgery Nov.18!

I had infiltrating ductal type, poorly differentiated,ER/PR - and Her2/nue 3t positive, stage II, grade 3. I had a wide incision, needle wire localization lumpectomy and sentinal nodes removed, one node positive.

I love all of your advice and experiences. I have posted this web site on the bulletin board at the onc and have told everyone I meet that is Her2 positive to go to this site I love it. Thanks in advance for your thoughts and help.

KellyA · 11-05-2006, 03:35 PM

Hi there,

You and I had almost identical dx. I just finished chemo, am on Herceptin and will start rads in three weeks. My oncologist and I have talked about how he'll test after tx, and he just uses markers, and then if those signal something, or if I am having other problems, he will scan me as needed. I can relate with worrying about mets and all- its on my mind alot now. I do know that many docs feel like scans and even markers can give false positives. Some scan and some don't, and I'm kind of in the middle with my feelings. Not really sure how I want it (other than to go away and never come back :-) ). I have had all of the same questions you have though.

Kelly

DX 05/06 37 years old
double mastectomy, immediate reconstruction
Stage 2b, ER/PR-, HER2 +, 3+ nodes, 2.2 cm
4 dose dense AC, 12 weekly Taxol with Herceptin
Weekly Herceptin x 1 year
35 rads

skoolmom · 11-05-2006, 05:38 PM

I too had the 4 dose dense A/C, 12 weeks of Taxol/herceptin and now on every 3 weeks Herceptin for 12 more doses, I finished my 33 days of radiation on June 21. Hopefully you'll do as well as I did, I didn't burn , peel or itch or anything. I kept putting vitamin E lotion on the area all the time and it kept it soft. I did get a little bit brown coloring but nothing bad. My hair has grown back and I was lucky enough to get the chemo curls, but it came in salt and pepper (heavy on the salt) I had some gray but not mostly white with the rest gray. I was just happy to have hair and some dye fixed the white hair up just fine! I've had several people ask me if I got a perm and asked who my hairdresser was. I told them hair by oncologist and body by surgeon! I wish you success in the rest of your journey! Hopefully we'll all be able to live a cancer free life now!

Mary Jo · 11-05-2006, 06:10 PM

Hi skoolmom,

If you read my signature you'll see that my dx was almost identical. Are you sure we don't go to the same oncologist? Haha! She feels EXACTLY the same way as your oncologist does. However, I agree with her. Don't get me wrong, there are times I'd LOVE a scan to tell me I'm fine BUT in all honesty, I wouldn't want them either. It would make me nuts. From reading the posts on this site you do see that there are so, so many false positives and so much chasing after nothing. However, at the time you don't know that and the stress has to be absolutely incredible.

So, me.....like you.........is doing fine for now. Until symptoms warrant my oncologist will do nothing. She does do blood work every 4 months when I see her but I'm positive that tumor markers aren't part of that either as I remember asking that at the beginning and they aren't used for early stagers like me. Too unreliable she said.

My oncologist is leaving however...........a new one has been hired from Chicago and I'm hoping he is just like my Doc now. My nurse, says he is awesome and we will get a long wonderfully. So.......................that's my story.

God Bless......

Mary Jo

Lauriemn · 11-06-2006, 05:44 AM

Hi, I also had a similar diagnosis and I go for pet/ct scans just to make sure everything is ok. At first my onc told me the same thing that your onc did, but I told him I didn't agree and wanted to have scans. I also talked to my insurance b4 talking to my onc, to see if they only covered so many pet/cts in a year, etc. They told me that they will cover anything my onc orders. So, when I talked to my onc and he started saying something about ins maybe not covering, I already told him what I had found out.

I told him I am 37 with 3 small children, I want to catch the mets as early as I can. I would rather deal with the anxiety of waiting for the results and possible false positives, than the wondering of whether I had mets.

If you really want a pet scan, demand it.

Laurie

tousled1 · 11-06-2006, 05:53 AM

Have any of you had the Serum HER2 test done? Since you are all HER2+ this is a blood test that you should definitely ask your about. I've had 2 done -- first one was a baseline. My oncologist will repeat this test every 12 weeks.

Mgarr · 11-10-2006, 06:06 PM

Hi ladies. I have the same diagnosis. I was 39 years old, 2b ER/PR- 3.5cm 1+ node grade 3. I had 4 A/C 4 Taxol dose dense rads & Herceptin. At Thanksgiving I will be 2 years from discovering my lump. I have a regular onc. & a second at the University Hospital and neither one of them does scans and I have minimal blood work done. I see the onc. every 3 months & have a mammo annually.

Tousled1,

What is does the serum test measure?

Mary

tousled1 · 11-10-2006, 09:55 PM

Mary,

These are links to info that Joe just posted on the HER2 Serum test.

http://www.her2support.org/patientb.pdf

http://www.her2support.org/faq.pdf

My first one was 10.1 and my last one was 9.5. At least I know the Herceptin is working

Tessa · 11-11-2006, 06:50 AM

Hi,

I live in Europe and hence am subject to prevailing opinion here. For what it's worth, doctors in Europe completely agree with your oncologists. After the first year no more scans unless some symptom warrants it. This seemed intuitively a bad idea to me, on the basis that several women have mentioned, namely that the earlier something is detected the easier it will be to squelch it. However the radiologist here told me that this is not the case, that outcome /survival - all those alarming words - are not positively affected by more aggressive testing. I then checked on the National Institutes of Health site, and found the same thing.

It is a relief to just go in for my every-six-months post-HERA study check-ups (blood, annual mammograms/x-rays and abdominal ultra-sound if I need reassurance) and not get stressed about ct-scans and mris.

It's hard to relax at first, but amazingly enough it does get easier,

Tessa

Mgarr · 11-11-2006, 10:32 AM

Thank you for you reply touseld1 I searched for the Serum test after I wrote. My mom always said think before you speak. Anyway, I read that is for metastatic patients maybe thats why the early stage are unaware of the test. Or it is not done routinely? Is done while on Herceptin or thereafter as well?

I do agree with Tessa, I am more comfortable with less testing that why I haven't pushed the issue. I work hard at "knowing" my body so that if I feel there are any changes I let my onc. know.

Thanks again.

Mary

KellyA · 11-11-2006, 02:25 PM

Tessa,

I do have one question- I totally understand that the extra scanning does not change the final outcome, however I still find it hard to believe that if you catch it early, that it's not easier to control.. For example, it seems like one met to the liver would be easier to control than mets to liver, lung and bones. My onc says the same thing that your doc says... I just don't understand.

Kelly

kat in the delta · 11-11-2006, 02:51 PM

Had your cancer reoccurred when you got the Serum test?? My Onc. doesn't do the serum. I'll see Monday if mine has come back by the CA 27 and CA 29 blood tests(think that's right). I am asking for another PET...How good are those blood tests, anyway and what other tests should I ask to be run on me before the End of the year....INPUT ANYONE
I was stage III. Her2+,ER+,PR- diagnosed last March 05.
kat in the delta
I am 52 and because of my bone density, I have just started taking Tamoxifen...is there something better or with less side effects...(bloodclots,,etc....) ?????? i

All input is valued !!!!!!!!!!!!!!!! and appreciated...kat

Sandy H · 11-11-2006, 03:24 PM

Another reason for less scaning and no one has mentioned it here is all the toxins from the dye and radiation exposure. There have been people who had gotten another primary from too much radiation and no doubt over exposure of dyes. That is listed in my being scanned every 6 weeks, as a side effect. They list it as being a small risk but the way I see it if its a risk its something we don't need to worry about but we do. Now, I hope I haven't opened up another can or worms and now more worry had been added to this issue of not scanning more frequently. hugs, Sandy

Bev · 11-11-2006, 08:12 PM

Kat, try googling Reloxifine(sp?). Not an AI but better than tamox. BB

Tessa · 11-12-2006, 02:26 AM

I agree with you, Kelly. All the logic I can dredge up points to the wisdom of checking often and early and. as you say, to catch one small tumor before it turns into several. I would have attributed the less-testing approach to a sort of European medical passivity, fatalism almost, (so different form my American proactive instincts) except for the NIH confirmation. If anyone has understood why bi-annual standard testing is as effective as more frequent higher-tech scanning, please let us know.

Thanks,
Tessa

11-14-2006, 07:15 AM

I did read in an article that bone mets are more frequent in ER+, and viscera mets are more frequent in ER-. If you are worried about radiation, at least an ultrasound of the abdomen could be reassuring, with a yearly chest x-ray?

One possible approach you might undertake with your oncologist, is to simply ask why no scanning? You might mention that from what you've read there are frequently no symptoms for liver or lung mets, and you were just wondering how he planned to treat these as soon as possible, if they go undetected?

Wishing you all the best
Kind regards,
Nedra

Tessa · 11-14-2006, 07:25 AM

I agree, Nedra, and that is exactly what I do. Whenever I feel anything which could be remotely interpreted as liver pain, I do ask for an ultrasound scan at my next check-up. Those scans are readily available here. The doctor who does it can simply tell me then and there that he sees nothing, so it is a big relief.

BY THE WAY, could someone clarify the exact location of the liver? I always read that it is below the rib cage, but does that mean below in the sense of closer to the ground, or below in the sense of closer to the spine? No anatomical chart I have looked at really makes this clear.

Thanks,

Tessa

11-14-2006, 07:32 AM

Hi Tessa - the liver is under the right rib cage, toward the front of the body, and the spleen is under the left rib cage. The kidneys are also under the rib cage, in the back. The rib cage as a protection for all the major organs. Normally, on deep inspiration, the person who is palpating your abdomen cannot feel the liver, unless it is enlarged. It should not be felt below the rib cage (sticking out from under the ribs). It becomes enlarged when diseased, and can be enlarged for many different reasons. If, when the doc palpates the abdomen, that area is tender, that is a sign something is wrong. It should normally not be tender.

Hope this has been of help

Nedra

Tessa · 11-14-2006, 07:37 AM

That's wonderfully helpful, Nedra, finally I know (which tiny pains to fret about and which to ignore). The information about tenderness is also very useful and will probably save me a few ultrasound scans in the future.

Thanks!

Tessa

Linda · 11-15-2006, 10:24 AM

I just wanted to add a support for not scanning. My onc does scan, and I've now been through 2 false positive scares, and I'm about to ask her (my doc) just what the benefit of these scans are and if it's really worth the emotional stress and risk of a needless biopsy. Even though I'm high risk, I've about had it with scans, (unless I have symptoms or worrisome blood results).
Linda