Tumor Markers/Scans

[*_Donna_*]

In previous posts I inquired about when everyone was getting scans. I had been advised via this board to demand blood work for tumor markers and serum her2 and baseline scans. I spoke with my onc who doesn't like to do scans until there are symptoms. Today he mentioned that he doesn't check tumor markers/serum her2 because if the markers are evaluated he would be searching everywhere. He believes that I do not have any cancer in me at this time and is working to cure the bc. I was dx in 7/05 with Stage 1, Grade 3 IDC 1.5cm and .4cm had lumpectomy with negative sentinal nodes. Bioposy path report mentions possible lymph invasion. ER-PR-Her2+++. Started chemo in 8/05 A/C 4 cycles every 3weeks. Then rads and taxol/herceptin for 12 weeks then continue with herceptin to equal 1 year. Onc states he closely follows ASOC and they do not adhere to scans/tumor markers. What does everyone think about this? I want to catch things early before they become a problem. My mom died of bc at age 65, she originally had a mast and took hormones (tamox,and others). She was 10years out when her hip fractured and it was discovered that the bc had metastized to her bones. She lived for 4 yrs after mets discovered and her quality of life was not the best (had hip replaced 2x). I don't want to fall through any cracks!
Thanks

[Gina]

Dear Donna,

BEST ADVICE...get a NEW onc....smile...but seriously, are you going to base perhaps one of the most MAJOR decisions for your life on an 'onc's' "belief" that you have no more cancer in your body??!!!! Especially when there are so many empirical methods out there to PROVE it one way or the other??? Personally, I hope and pray that you do NOT have any cancer anywhere, but noting that you are ER-PR- and Her-2 +++ (which can become high risk, though it looks like you caught it early thank goodness) as I am also, I would strongly advise you to monitor yourself somehow. I know a lot of oncs don't adhere to the markers because they really don't understand much about them and, in truth, interpreting markers can be very tricky. You really have to start charting your own on a regular basis and find out what, if anything, they say about you. Right now, for instance, given what you have just mentioned about your treatment and the fact that I believe you are still getting regular Herceptin, your marker numbers are probably quite normal. However, it has been my personal experience (long time user of Herceptin and "believer" in empirical data..wink; Dx 97) that if the numbers suddenly take a run for the worst it is a STRONG indication to get back on Herceptin or up the dose you are already taking. The only way you will NOTICE this increase, is if you are checking them at least once every 3 months, just to be safe. If you wait till symptoms, to scan...most likely, by that time you will have serious mets that could have possibly been prevented. Also, ask your onc if he has ever heard of a simple PET scan...GEEE!!!! Let me at him...wink. One last caviat..., if I had believed everything an onc told me or followed even 50 percent of what they "thought" was the perceived 'wisdom' at the time...I, like many of our sisters before us, would be long since dead, dead, dead. It is your life. I can see you have a GOOD mind and strong will. You will make the right decisions. Also, if--for other reasons--you like this onc and want to stay with him/her, you can get the markers taken usually at least once or twice a year from your primary doctor when you get your physical. Many will simply include it in the normal blood work-up, especially, since now you have a solid breast cancer history, you are well within your rights to ask for it. Good luck to you, Gina

[Christine OZ]

Donna, i would ask onc for bone scan and CT scan now as a starting point and then follow his way. No symptoms, no scans. I must say i was quite edgy to get scans one year after finishing chemo to make sure it hasn't progressed. I did end up getting those as i am on HERA trial(Observation arm). But now i don't really feel like i need to get more till it may be deemed necessary. I have heard a lot of people talk about scans/ no scans and i can see why they don't do it. You need to be in tune with your body and if you notice any changes that don't go away, do something about it. Seeing as you are early BC they don't constantly check bloods like they do for metastatic patients. but they do keep an eye on them.
My mother died at 55 from BC so i know how you feel. Being HER_2 we probably didn't get it from them though. I am still waiting on my gene results. And my mother died 20 years ago and i know things are so different now.
Sounds like you are getting the chemo/herceptin that has had good results.
All the best
Christine

[*_BonnieT_*]

Hi Donna
I also caught my BC early, had a bilateral mastectomy since my mom died form this disease about 20 years ago. My Oncologist is very thorough, they didn't think I had to worry since it was caught so early. I see her every 3 months, and have labs done every 6 months with tumor markers. last year she thought she felt breast tissue under my arm and so I had a MRI and there wasn't any breast tissue but they found a spot on my chest, and of coarse it turned out to be cancer again. Chemo, and radiation, and trying herceptin now, but my MUGA is low 36% so I am on heart meds and will get it checked in October.
I know alot of Dr.'s don't believe in tumor markers but at least you have a baseline and if it does go up you know something is going on. I am going to have a PET scan at least once a year . My first oncologist didn't believe in markers or scans, also he felt checking me once a year was enough, since it was caught so early.Luckily I went for a second opinion, or I still probably wouldn't know that the cancer came back.
You have to be in charge of your health, I would just tell your Dr. that to have some peace of mind you would like to have the tumor markers every 6 months,
or How often do you see your Dr. ??? and at least a chest xray, ( although my spot didn't show up on the chest xray so i don't have alot of faith in them ).
I would also ask for a PET scan now and then every 1-2 years , until you have been cancer free for 5 years.
If your Dr. refuses than I would be honest with him/her and tell them that you need to get a second opinion.
Honestly I would have never known that the cancer came back because I didn't have any symptoms !!!!!!!!!!!!!!!!!!!!!!!
Sorry to ramble on , but I think it is so important to take charge of your own health, and find a Dr. that will work with you !!!!!!!!!!!!!!!!! Maybe someone on this board knows of a Dr. in your area.
Good Luck
God Bless
Bonnie T

[tammymarie]

Hi, I have to say that I agree with what everyone else has said. You need a new Onc if he won't do scans at least once 1-2 yrs and tumor markers. My onc didn't believe in tumor markers either, I went to a doctor to see about reconstruction and she sent me for tumor marker and scans etc... and that is how we found the liver mets!!!
I did not have any lymph nodes positive at time of dx!! 4 rounds A/C 16 high dose rads and 1 year tamoxifen.

I hated it when my onc would say it doesn't matter if we catch a reccurence early or not the outcome is the same well...bulls@#$t on that, I was a candidate for liver resection because it was still considered early disease... there were no other "hot" spots anywhere, had I waited until I had symptoms it would have been too late!!!!!


You would think that because I was on 30 at dx with 4 young children that they would really watch me, but nooooo... I just thank God for his intervention in finding the liver mets early!!!! I have a different onc now!!!!

Please be pushy this is not the time to mind your manners and not make waves!!!!!!
Tammy

[*_Leslie_*]

Dear Ladies I wish that I could bring you with me to my next onc visit. I don't like to make waves and I feel like I'm getting "the bums rush" at my appts. The onc.was annoyed that he had to explain to me about herceptin I am too far out from treatment for him to reccomend it for me I finished chemo and rads in june of 2004 . He said if I wanted it I could try ti get insurance to pay for it but didn't think they would. He also said I looked great. What does that mean? I looked great the day I first found out I had cancer I was soooooooooo mad. He also didn't like the fact that I am still getting periods said it was bad because of being er pr+ I called 2 days ago because I got another nasty period and was thinking I should have my ovaries removed,I am still waiting for a return phone call. I live on the cape and close enough to Boston if anyone could recomend a good "caring"onc. I would love to change.Thanks in advance Leslie

[Bonnie T]

Leslie
I would definitely get a second opinion, I started herceptin 12 months after chemo and rad. , not sure if that is the limit , I know I had to make my decsion right away if I wanted it.
DON'T worry about making waves there are alot of good caring Dr's out there
i would post a new ? on this board asking for Dr's in your area??
I use to work as a respiratory therapist in the hospital, and trust me doctors are just people, they are not better than anyone else, you have to keep that in mind when you approach your Dr. It is worth finding a Dr. who will work with you !!!!!!!!!!!!!!!!!!!!!!!!! This is your life and you need to take charge of your health !!!!!!!!!!! Ok- that is my pep talk :-)
keep us posted !!
Bonnie T

[al from canada]

Donna,
Read him the riot act. The first thing our Onc did in Canada, believe it or not was order complete bone scan and soft tisue ultra sounds. That's how we new that Linda had spots on her liver right from the beginning. HER2....this sor of thing should be the industry standard by now. I know....wishfuk thinking BUT.... if enough of us DEMAND the scans, it will become the industry standard.

If he diesn't budge, get a second opinion; with your family history and HER2, the answer should require very little thought.
Good luck,
Al

[*_Donna_*]

Thanks everyone, lots to talk over when I see my onc on Thursday.