Tumor markers are up, & so is my anxiety!

[Chelee]

I am just beyond stressed tonight. I had my 6 month onc appt today. My onc said my TM'ers were up to 46...that's high for me. (Reference range is 38)

I've been getting my TM'ers done since I was dx. They have always been 15 to 18. But over the last yr they have slowly been inching up which has concerned me but my onc just ignores it.

My last visit to her was 6 months ago & I told her I was concerned about my lungs & scapula pain. I requested a PET/CT scan back then. She refused and told me to see my primary doc. Which I did and he wouldn't order a scan either...just did a x-ray which showed nothing. Anyway I caused a stink back then because I was concerned. Three doc's all refused. I did get them to NOTE that I requested a scan and it was refused.

Now 6 months later and my TM'ers are up to 46 and I'm scared to death. So now my onc FINALLY ordered me to have a PET/CT. But I'm so ticked off because I asked for a scan 6 months ago. Plus I asked my onc if I could have the PET/CT asap...I can't wait...to much anxiety. She looked me right in the face and said "Yea, you should have no problem getting in this week".

Well she gives me the orders for the gal at the desk and it said right on it, "Schedule PET/CT for 2 or 3 wks". The girl setting up my PET/CT said she had to follow my onc orders...so my PET isn't until the 28th & thats only because I pushed the issue. Then she has me set-up to come in a MONTH after the scan. I can't believe this. If you can't tell I am stressed out of my mind tonight. I've been telling her to pay attention to my markers for a long time now...I know they aren't always a reliable tool..but in my case they always remained consisted. Why would they be so high all of a sudden. Has anyone here had their TM'ers jump that high before and it not be a recurrance?

Here's my TM'er readings over the last yr that were every 3 to 4 months as they inched their way up. 15, 18, 20, 23, 25, & now 46. I know I shouldn't worry until I know for sure...but as you all know that is easier said then done.

Chelee

[Mary Anne in TX]

Chelee, you were diagnosed and treated just about the same time as me with similiar diagnosis. I have never been refused a scan or test when I asked for it. My insurance has been mediocre at best, but covers some of the scans.
My TM scores "lived" in the 40s most of the time. 30s was good. My last one was 28 and I have still been celebrating. I got a CTC (circulating tumor cells) test not long ago and it gave me such peace of mind. I get TMs every 3 months. You have the right to be involved in your care.
Is your onc the only one in town? Do you have choices?
Just want to lend my support and tell you I'm on your side.
Hope you can find a good outlet for the stress and anger energy! It's the times my house gets the best cleaning!
Thinking good thoughts for you, ma

[DonnaD]

Chelee,
I am so sorry you are going through this. Remember TM are not always reliable. I do not know about the rapid jump but hopefully someone on the board will respond. Becky?????

Also sorry you have to wait for the PET/CT. I wish all oncs. could be sympathic and passionate to their patients concerns. Our lives will never be the same after the diagnoses of cancer. Try to take deep breaths, relay on the board, family and friends for comfort and support. My prayers are with you.

Donna

[suzan w]

I am so sorry you are dealing with all this anxiety...I can identify with every word you say. I really don't understand why oncologists/doctors/and anyone who-for a professional choice-deals with cancer patients is not overflowing with a calm, but LET'S GET ANYTHING YOU WANT TO ALLEVIATE YOUR FEARS attitude. This should be a no-big-deal...no-brainer. We are all scared to death (literally) of a recurrance. We all KNOW that early detection is KEY. I just do not understand the attitude of the medical community that says, "wait for symptoms to appear" and leaves us feeling like whiney brats. Hmmmmmph. Got that off my breastless chest. Fighting cancer is hard enough without having to fight the doctors and insurance companies for what we know is best for us. Sending good thoughts your wau, Chelee...even though I am sounding like a ranting maniac!!! XOX Suzan

[Yorkiegirl]

Chelee Postive thoughts and prayers going for you. I know it's scary for sure. I sure you could get those scans faster.

Just know prayers are being said.

[Becky]

Oh Chelee


Besides your TMs and scans not being able to be done for 2 weeks, you still have to put up with all the downright meanness of your medical team.

Isn't there anywhere else you can go? It almost seems like a vet would do better. You need a new medical team girl. At least a team that will treat you like a human being and a valued partner.

I am wrapping my arms around you.

[Pam P]

Chelee - I agree with others - you shouldn't have to wait so long to get the requested scans to find out if anything is going on. I hope you can get better attention and support from your medical team - or find another doctor who is more understanding of the emotional stress caused by not getting thorough and timely answers. Best wishes for a clear scan.

[tricia keegan]

Chelee, I think you should call and ask your onc outright why he put 2-3 weeks on the script rather than urgent this week!!!!
This relationship with your medical team cannot be good for you mentally or physically so if you have a choice I'd go elsewhere for sure.
I'm sorry you're so stressed, but try really hard to relax a little.
I know TM's can get higher with an infection or certain meds so this may be the cause?
I wish I could help more but my onc does'nt even do tumour marker's!
Just wanted to let you know I'm thinking of you and agree, you have been treated badly.

[Sheila]

Chelee
I would get rid of your current team if you can....no one deserves to be treated like that. No wonder you are anxious. We go through enough stress with this disease, and then to have the medical team treat us like we are over reacting...I would over react and DUMP THEM! Find a Dr who had YOUR best interests at heart. You are the important one, not the person with the fancy title!

[Patb]

This is just not acceptable or fair. All the stress you
go through and the wait. I always tell them if they
don't do it now I will be admitted for something else
because of the stress. If you can't change now,
I would as soon as possible. My thoughts are with
you, we have all waited for test and it is terrible.
Try to breath deeply and be around others for
support. Alone is bad, our thoughts just take over.
Take care ..
Patb

[Ruth]

Oh Chelee I am so sorry for this wait! It is just not fair. I am hoping that everything is OK. I remember that you have had a hard time getting your Onc. to listen to you...to really listen. I wish you could get a new team as Becky suggested. You had an issue with insurance coverage I think in the past...are you still covered with an HMO? Does that have any effect on what Onc.'s you can use?

I'm sending you lots of hugs and calming thoughts.

Ruth

[Sherryg683]

This makes me furious. My oncologist gives me scans whenever I ask for them, then has me in 3 days later for results, and he is very busy. He says it is his job to make his patients feel safe. Many, many patients do not want nor request scans but those who have reason to should definately be taken seriously. Your oncologist has given you problems before. You should definately look for a better more understanding doctor, there are those out there..sherry

[Jean]

Chelee,
I know you have never had a good realtonship with your health care team and that is criminal. I remember you always haveing problems and it is due I believe from what you have written in the past due to your insurance coverage (right)?

I also think I remember you had someone whom you contacted for help. Does the facilty where you are going have a patient advocacy dept? You must get someone
to move your file over to another dr.

Your dr. is not a good or healthy match for you.
Don't hesitate to demand another dr. it is your right
to make a change.

Sending you lots of love,
Well Wishes,
jean
PS : While I know those markers are making you worry
you know that are not reliable and many issues can cause the markers to show elevation.

Please let us know how you make out.

[DianneS]

Chelee,

I changed oncs 3 times before I finally (I hope) found someone with a heart. I can't understand why they want us to wait until we have symptoms.....curious way to do medicine. My onc doesn't do tumour markers, he says they are not reliable and many things can affect them - medications, diet, etc.
Just be a squeaky wheel. Call them daily. Tell them you want an appt. NOW. Camp out in their office. We have enough to deal with without accommodating people who are clueless. See if patient advocacy can help. They are usually hanging around in a a medical facility somewhere. Or a counselors office...I had great results by going to the counselor at the cancer agency and whining about the jerk I had for an onc. Will be sending good thoughts your way - do try to not stress, take a deep breath, ok, many deep breaths. Hope to hear that you got your scans ASAP!
Dianne

[Joan M]

Chelee,

Is it possible to switch locations? Get a new onc?

And even if your onc schedules an appointment two weeks after the scan, she should be able to give you the results by phone as soon as she gets them.

If possible, you should look around for another medical team. It's upsetting that you were stage IIIA initially and scans were not done then just to ensure that everything was clear.

Why were you not able to have rads?

I'm praying for another onc to take the reins.

Joan

[Chelee]

I am feeling emotionally & mentally exhausted since my appt. with my onc. I'm so tired it's unbelievable. I feel so alone...I have no one anymore. My husband but he is little to no support. All I have left is my Her2 sisters. It was nice to come here & find replies....it brings tears to my eyes. Only people that have been there could possible understand how I'm feeling.

And yes, I do have an HMO insurance plan...that’s been my biggest problem since day one. We all know HMO's are all about "Profit over patient". PPO's are the way to go if you can afford one. I really thought my onc would order the PET/CT when I asked for one 6 months ago. Prior to that appt there was one time I complained of serious upper back pain...along with a major headache. (Headache was REAL) Much to my surprise that day she said immediately ordered me to have a PET/CT & brain MRI. It's been a long time since then so I don't understand why she choose to ignore my slowing rising tumor markers and other serious issues. I've been pointing out my TM'ers to her for a long time. Its ridiculous for her to wait till their over the reference range to do anything. Her way to prove to the HMO these tests are now necessary. ARGH!!!

I will be on the phone tomorrow & see if "I" can schedule my PET/CT for this wk without telling my onc. I did that once and it worked. I'm also going to call her office all day until I get to talk to her on the phone & ask her why she sent orders to the front desk to make my PET/CT for 2 or 3 wks away when she told me to my face I could get in this wk. I'm NOT going to let her get away with this. I'm so angry. I'm also going to contact the case manager that was issued to me last time I had problems & see if she can help in any way?

I had my TM'ers ran again Monday so the results should be back today. I sure wish it was a fluke...but it sure worries me since they have slowly and consistently been rising for a year now. They were always so stable during treatment and a good year or so after. Thanks everyone for your support...it means the world to me.

Chelee

[Chelee]

Hi Joan, I wasn't able to have rads because I have some under developed ribs...along with scoliosis which results in me having
compromised lungs. The rads onc wanted to radiate but my pulmonary doc did several lung funtion tests on me and they found out I have only 30% use of my left lung & 40% of my right one. So any rads would of caused some damage & they were afraid it would put me in a wheel chair on oxygen...or worse yet...kill me.

But that would seem like more reasons for them to keep a closer eye on me and not ignore TM'ers or my complaints of breathing problems or scapula pain.

I did have a baseline PET/CT Joan...& one when I finished chemo. I believe I've had a total of 4, if not 5 in the last 3 yrs & 8 months. And I've had at least 4 brain MRI's. So they have done scans on me...but to put me off 6 months there is no excuse for it...other then they decided to take a chance on me in order to save money. (I hate HMO's...no one in PPO'S have these problems. Its just not right.

Chelee

[lexigirl]

Chelee,

Thinking of you and I am very hopeful that this isn't a recurrence happening. It makes me mad that you get the run around at your oncs. office. If only they walked in our shoes for even a day...

Big hugs to you,
Lexi

[Chelee]

It took all day but I FINALLY got through to them! I had to call a good 5 times before I got my onc's nurse. I went through the entire thing with the nurse...I basically let her know I didn't appreciate my onc saying I could get right in for a PET/CT next week...then seeing on the "orders" not to make an appt for me for at least 2 to 3 wks!

I told this nurse that I want an onc that is in my corner & fighting for me...not one that drags her feet. I reminded this nurse how I called 4 months ago worried about my TM'ers back then & wanted to come in...but they said no. I asked why would they do that to someone that is stage IIIA, Her2/neu, with positive nodes that could NOT have rads! I let her know how upset I was and there is NO excuse for this. She asked if I wanted to talk to my onc. I said "YES"!

Of course after a good 10 minutes away from phone she comes back & says my onc is busy. (Sure thing.) But she would get back to me...I said it better be today. So now they called me back & my NEW appt for my PET/CT will be this Monday morning the 21st, at 7:30 AM. Then my appt with my onc will be THIS Thursday the 24th. (So I just shaved off 21 extra days I would have had to wait.)

I asked the nurse what the results of my TM'ers from this last Monday were? So now they jumped again! Last appt on Monday they were 46...now in a wks time they are 53. Now I'm terrified.

Chelee

[Laurel]

Way to battle, Chelee!!! I do not blame you one bit for feeling nervous and majorly stressed. Cancer is such a scary disease. You should not have to put up with a marginalizing M.D. on top of all you have endured. I am angered on your behalf!

[Mary Jo]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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/2008/09/what-is-pseudo-bursa.html

[Chelee]

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]

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]

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 (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://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 (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 (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]

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]

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]

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]

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.

[juanita]

oh yes, having someone you completely trust is very important. wish i'd known that when i began this journey.