Tumor markers are up, & so is my anxiety! - Page 2

Mary Jo · 09-16-2009, 06:31 PM

Hi Chelee...Maybe I'm repeating what others have said but why can't you switch oncologists. Oh my gosh.....such rude and mean behavior. There is no way I would put up with that. No one deserves that.

I guess as long as you go to an oncologist like this that will be the behavior you can expect. I'm so sorry for you. I can't imagine being fearful and then having a doctor who truly seems to care less.

Please find another oncologist if you can. I pray your PET/CT turns out well Chelee and I'm so sorry you are having to go through all this.

Love and gentle hugs,

Mary Jo

caya · 09-16-2009, 08:09 PM

Chelee,

I am sorry you are going through all this aggravation and anxiety... but I am glad that you persisted and got your scans moved up.

sending big hugs from Canada.

all the best
caya

ElaineM · 09-16-2009, 09:28 PM

I would see if I could talk my HMO into letting me get a second opinion. I had a problem with an oncologist many years ago when I started this cancer thing. I was able to talk to my HMO into letting me see two other oncologists after I told the HMO about the problems I was having. I consulted two oncologists and I found a new one that I was happy with.
By the way, if the scans do not show anything significant try to find out if you have inflammation, lymphdema, benign tumors or seromas somewhere in your body. They can all raise the tumor markers.

Chelee · 09-17-2009, 10:13 PM

Its ridiculous that I have to get that upset & go through what I did to get my scan & appt pushed up. Wait till I see my onc this Thursday...she has some explaining to do!

Elaine I will definitely be getting a 2nd opinion if God forbid this is a recurrance. I've had lots of 2nd opinions for all kinds of things since dx. They have been pretty good about that...the few times they tried to deny me a 2nd opinion I called the HMO and it was OK'd asap.

I just pray this slow elevation in TM'ers is from something else. I do have a large seroma that's been there since my 1st mastectomy...its gotten so hard and it really hurts. I just want to be able to breathe again...I haven't been this stressed since my 1st dx.

Chelee

Pam P · 09-18-2009, 04:13 AM

Chelee - I'm so glad to read that you were assertive and got your scan moved up. Now you'll have the results in less than a week to know if there's anything going on. If the scans are clear then I think to ask about that circulating tumor blood test that someone else mentioned would be the next thing I'd request. Another measure to compare against the ca2729 counts. Even the 53 is pretty low but it's not the pattern you want to see and you need to know if it's caused the the seroma. Can they do anything about that or is that just something you have to live with?

Mary Anne in TX · 09-18-2009, 05:22 AM

Chelee, the same fight that got your appointments moved up is the fight that will help you if you need to fight the bc again. You're a warrior girl and you've got us behind you. ma

Chelee · 09-18-2009, 01:48 PM

Hi Pam, When I see my onc this Thurs. I will request the "CTC" test be done...that is a good idea that "MA" came up with. (Thanks MA) As to my seroma my surgeon drained it twice & he said he doesn't like to do it unless you have to due to the risk of infection. I was told in time it would slowly absorbed...but that never happened.
I know I've complained about pain right where my seroma is forever it seems like. What worries me is I have pain from the seroma that travels down around my liver area...so you know where my mind goes. (Liver mets) I know there has been changes in there because the seroma was never this hard to the touch.

I just know that my slowly rising TMers aren't a good sign. If it jumped up once or twice & went back down...but they just keep moving up. Now that I've looked at dates of my trt etc...I see my markers started on an upward trend exactly 4 months after I completed Herceptin. It makes me think the Herceptin was working. I begged to stay on it but was denied by my onc and a 2nd opinion onc at City of Hope. They told me there was no data to back me staying on it longer then a yr.

Chelee

ElaineM · 09-18-2009, 02:09 PM

I wonder if there is some research out there by Dr. Slamon or others that have figured out how long Herceptin can be used?
Maybe you can find a specialist who can address your concerns about the seroma if it is bothering you and seems to be getting worse. Are there any breast specialists in your area?
An ultra sound might be able to tell what is happening to the seroma and if you have lymphdema which is an inflammatory condition.
Lymphdema can happen anywhere in the body, not just in the arms.
How about a C reactive protein test in addition to the CTC test? C reactive protein tests help determine how much inflammation is in the body.

swimangel72 · 09-18-2009, 02:26 PM

Oh Chelee - I am sending a prayer your way that your scans will be OK................but wow girl, you have a Fighting Irish spirit - I am impressed! Good for you to call back and get them to sit up and pay attention! (Are you Irish, btw, lol.)

Ruth · 09-18-2009, 04:05 PM

Thinking of you Chelee...I know the next week and half will be filled with anxiety for you and I wish that there was something that I could do. I will pray that you have peace and can enjoy your weekend. I know Thursday seems like a long way off. I am amazed at your spirit and glad you got your appointment moved up!
Hugs ~ Ruth

Chelee · 09-18-2009, 08:14 PM

Elaine, I do have a breast specialist that had me doing routine ultrasounds of the seroma every four to six months. There were no changes seen over a long period of time so I haven't been back in for a while. As hard as the seroma is now, & the discomfort it's causing me...I think it's time to go back in and have it checked out. It's been causing some mild sharp pains & pressure.

I have not heard of the "C reactive protein test" but I will keep that in mind depending on what I find out this coming wk. I will google it. Right now my entire body feels like inflammation. lol All the stress has everything hurting! Thanks for the information...I appreciate it.

Chelee

Chelee · 09-18-2009, 08:32 PM

Kathy, You hit it right on...I'm not all Irish...but I do have just enough Irish to come in handy at times like this. lol

Ruth, Thanks so much for you kind words. It helps just having some feed back here from people like you. Means alot to me. I doubt I will enjoy my weekend...I haven't been able to breathe or do anything since my last appt. It makes me so angry that I am wasting valuable time just stuck in this fear mode. It acomplishes nothing...I know better then this...but I just can't manage to make myself do anything. I can't even sleep thur the night...its that bad. My onc mentioned my weight loss too...and I've dropped 6 more lbs since last Monday...now I'm really getting concerned. (I wish some of these onc could live a day in OUR shoes.) Actually a good month or more would make me much happier.

Chelee

swimangel72 · 09-18-2009, 09:09 PM

Chelee - I read that some seromas can turn into pseudobursas - do you think this is what happened to you? Here's more info on pseudobursas:
http://thetummytuck.blogspot.com/200...udo-bursa.html

Chelee · 09-19-2009, 09:33 PM

Kathy, I did alot of reading on that last night & yes it sounds exactly like the problem. After reading the link you gave me, I did a seperate search on google about pseudobursas. I do remember my breast surgeon explaining over time if it did not resorb like it should....many times scar tissue builds up around it and he would no longer be able to drain it. This must of been exactly what he was talking about.

Thanks for the link...much appreciated. My ultrasounds always referred to my seroma as "slowly resolving". Ha! It's never gotten any smaller so I'm not sure why they say that in every report. (It must make them feel better...but it sure doesn't help me any.) lol

Chelee

Jackie07 · 09-20-2009, 05:05 AM

Chelee,

What an educational post! Thanks for sharing your anguish - my oncologist prescribed me some antidepressant last time I saw him at the end of August. He didn't even realize that 'he' was the major cause of my depression!

They were lucky that I did not try to sue them for having missed my recurrence for 4 whole years. When I asked for genetic testing, the OB/GYN wanted to charge me $3000.00. So I told my oncologist and he arranged it for me 'free'. Sure enough, I got some kind of BRCA1 variance of unknown significance. Since I've already had two brain (tumor) surgeries before breast cancer, I really think that I was born (premature) with some kind of defects (None of my other five 'older' siblings have had any major health problems.) But I will have to wait till November when I see the genetic specialist to see if she would help to let me have preventive oophorectomy.

My oncologist never would give me tumor marker test - claiming it's not a reliable gauge. I've read in other research articles supporting his claim. However, how in the world should they have misread my mammagrams for the whole four years? Why didn't they let me know there were 'shadows' (they termed it 'scar tissue') there so I could have requested for an ultrasound? This time when my family doctor ordered CT and then ultrasound (to rule out cancer) for my liver discomfort, I leared from the nurse practitioner that my oncologist did spend quite some time to study the results. Our family doctor's father used to be the Chairman of the hospital, so I guess he's not afraid of ordering tests.

By the way, my IDC was also very poorly differentiated (thus Grade '3'.)

Take care and keep us posted. In the meantime, know that all your Her2 sisters are praying for your good health.

ElaineM · 09-20-2009, 03:24 PM

I decided to do some research on tumor markers and share the results with everyone, so here are some links and assorted articles for both patients and medical professionals on the subject.
TUMOR MARKERS
http://www.plwc.org/plwc/external_files/tmarker_fin.pdf
A Patient’s Guide to Understanding Tumor Markers for Breast and Colon Cancers

http://www.usc.edu/schools/medicine/departments/pathology/research/clampcancer/up_from_HL/papers/liabrary/Tumor%20Markers/clinical%20translation.pdf

http://jnm.snmjournals.org/cgi/content/full/45/12/2045
Is 18F-FDG PET/CT Useful for Imaging and Management of Patients with Suspected Occult Recurrence of Cancer?
The results of present study indicate that hybrid PET/CT plays a potential important role in the early diagnosis and assessment of the extent of relapsed disease in cancer patients with increasing concentrations of serum tumor markers as the single suspicion of recurrence, with a significant clinical impact on further treatment planning in one third of the patient population.

A Re-Evaluation of Carcinoembryonic Antigen (CEA) as a Serum Marker for Breast Cancer

http://clincancerres.aacrjournals.org/content/7/8/2357.full

ASCO RECOMMEMDATIONS FOR TUMOR MARKERS IN BREAST CANCER.

http://www.asco.org/ASCO/Downloads/Cancer%20Policy%20and%20Clinical%20Affairs/Clinical%20Affairs%20(derivative%20products)/Breast%20TM%202007%20Changes-Final.pdf

Chelee · 09-20-2009, 08:37 PM

Jackie, It's not funny...but I did have to laugh at your first sentence about your onc & taking anti-depressants. I can SO relate. Some of these doctors these days are just unbelievable. Totally clueless!

Elaine, I've read so much since my last appt. about TM'ers that I think I'll need to see my optometrist. I almost completely blind at this point. lol Thanks for the links on TM'ers. I did find one thing tonight that could be responsible for my TM'ers rising?

On PubMed I found an article on TM'er and it mentioned some of the woman with breast cancer that had slowly elevated tumor markers were caused by "Interstitial lung fibrosis". All my PET/CTs from the first one has shown that I have "chronic interstital disease throughout both lungs". It says consistent with Atelectasis or scarring. But it always says on my PET/CT "unchanged". Then June & July my husband & I both had a really bad lung infection of some kind? It stuck with us for a good two months. We took anti-biotics and cleared it up but we have both been complaining about our lungs. It feels like they still have phlegm and mucus stuck in there.

So now I'm thinking since I already have chronic interstital disease...topped with this nasty lung infection or whatever it is we've had....that might explain the elevation with my TM'ers? I'm grasping at everything if you can't tell.

I have my PET/CT in the morning. Check-in time 7:30 AM. Then I just have to "wait" till Thursday...that is not going to be easy.

Chelee

harrie · 09-21-2009, 12:22 AM

Chelee, it does sound reasonable that the lung issue is causing the rise in the TMs.
I wanted to ask you, is your oncologist a general onc or does he specialize primarily in breasts?
It is so impt for you to see someone you are very confident with and can communicate with. You are smart and very proactive. I am sure you can find the "right" facility to moniter your health. They are definitely out there.

Chelee · 09-21-2009, 10:54 PM

Hi Harrie, My onc is a general, but really specializes in breast cancer. I'd could write a novel on what I've been through at this place...there is so much to it no one could possible understand. I have contacted legal advice more then once since I've been there. Things got better after that and I was assigned a case manager that stepped in. The case manager talked to my onc well over 1 1/2 yrs ago and there was a big improvement. But now my onc is back to her old self...she's gotten comfortable again. Whats really frustrating she is not stupid...she is very knowlegable...but she sure lacks communications skills. She just wants you in and out of the exam room in 6 minutes and thats ridiculous. Something is going to change!

I had my PET/CT early this morning...I may be over reacting but I sure didn't like the look on the mans face that ran my PET/CT. Now I just have to wait till this Thursday to see my onc...darn am I anxious. I wish she would call me before then and tell me my scans are unremarkable. (Thats what I'm praying for.) Waiting sure sucks.

Chelee

harrie · 09-21-2009, 11:56 PM

Chelee, do you live in a rural area like me where access to any oncologist is extremely limited? I can't stress enough how impt it is, for your mental health, to find someone you can be confident in. People to relieve your stress, not create it.