Confused Follow Up Onc Visits

livinglarge

I am trying to understand the process and what everyone goes thru during their follow up appointments.  Not sure if I need to be concerned or just be happy.  I had a fairly aggressive tumor which was TN.  I had Chemo, BMX, Recon and all that stuff, which finished about last Aug.  I have been seeing my onc every three months for my follow ups.  He says I am doing great and I really want to believe him but not sure how he knows and when I ask he says having all those test does not improve survival rates...  I have not had any blood work, chest x ray or any other scan.  Nothing at all.  So every time I come home from a visit everyone ask how it went and I say well but no one is ever relieved.  I love my onc but just want to know what others experience during their follow up visits.

Luah

LL: Right now, I go every 4 months to my onc, every 6 months to my BS. No scans or bloodwork unless I show troublesome symptoms. Docs do a clinical breast/neck exam, cursory abdominal and lung check, ask how I'm feeling, that's it. I get a mammo and MRI once a year. From what I've read on these boards, this is pretty common. Regular scanning hasn't been shown to improve outcomes.

LuvRVing

Even the oncologist I really disliked performed regular blood work including the CA 27.29 tumor marker test.  Sometimes those lab results point to something that a physical exam cannot detect.  That was certainly true in my case.  My CA 27.29 jumped to just above normal in January and was redone in March, just to be cautious.  Well, they were higher in March, and by March 17, I had a confirmation that I had a loco-regional recurrence.  So personally, I will be insisting on the tests.  I have just reached the halfway point of my chemo regime, and my current oncologist has ordered a tumor marker test a few days before my next treatment.  We will review the numbers at my pre-chemo exam and be able to determine if the chemo is doing its job. 

Personally, I would insist!

Michelle

livinglarge

Thanks for the response.  So I am not alone as it sounds like the same exam process.  I just thought if it did spread the earlier they catch it the better the outcome.

Guess I am just being paranoid.  I assume this will pass with time. 

Lynn18

LL:  I go to my onc every 3 months and have bloodwork done, along with a clinical exam.   I also get vitamin D levels checked.  I see the BS twice a year and will get a mammogram and MRI twice a year.   

I agree with Michelle, I would insist on at least getting bloodwork done.  You might ask your onc about checking vitamin D levels.

livinglarge

I too used to get my blood work done before each treatment but now that I am post treatment/chemo I haven't had any blood work.  I didn't think too much about it until my mother kept asking me how I knew I was NED and she told me how her friends all said blood work is a must and they were all shocked I hadn't had blood drawn.  Sometimes mother's mean well but she is making me a little nervous.  I am sure my 17 year says the same about me 

livinglarge

My regular GP told me to take Vitamin D and Calcium.  Each onc visit they do ask if I am still taking the vitamins.  I am learning that Vit D is very important to help prevent cancer.  I guess I should be diligent about taking it each day.

Might sounds stupid but since I had a BLM I assume I don't need a mammogram or MRI.  With that said I do sometimes get little discomfort in breast where the cancer was even though there is an implant.  I just keep telling myself it's my body healing from the surgery and try not to worry about it.  It's a little creepy like when you hear about people who have lost a leg but still feel pain in the missing limb. 

barbe1958

I used to worry about tests too but now I don't. If I do recur, I don't want to know right away! I'd still be Stage IV whether I knew it or not and finding it sooner isn't going to change the treatment - I'd just start the treatment earlier. It took 2 1/2 years to get to this point of thinking though.

I just keep vigilant and see my reg doc when I need my normal drugs renewed and tell him if anything is bugging me. Then we go looking. So far so good!

Lynn18

LL:  That's good that you are taking vit. D and calcium, I take calcium also.  I have read studies that suggested vit. D was especially important to those of us who are triple negative.

I also have strange pains now and then, as long as they don't linger, I don't think we should worry.

The nice thing about having a BLM is, no more mammograms or MRIs.   

livinglarge

Barbe - that's a great way of handling it.  I hope I get to that point as well.  Hmm it took 2.5 years for you so I guess I only have another year or so to go.

Glad to hear everything is good so far.  Let's keep it that way. 

nastazia_s

i will have my second yearly PET CT soon and im very confused as to whether it is necessary.

my oncologist insists to have it only now for a second time(2years since diagnosis) and from next year will have one a year MRI and once mammo and ultrasound with bloodwork.

does any of you have PET CT as a follow up?

is it necessary or is it because im triple negative with lymph nodes affected?

im very confused.......

Luah

It is confusing because individual oncologists may vary in their approach, but here are the general practice guidelines...

National Comprehensive Cancer Network guidelines: "interval history and physical exam every 4-6 months for 5 years, then every 12 mos...annual mammography". (Other points relate to hormone therapy surveillance which doesn't apply here.)

ASCO guidelines, similar, are here: http://www.asco.org/ASCOv2/Practice+%26+Guidelines/Guidelines/Clinical+Practice+Guidelines/American+Society+of+Clinical+Oncology+2006+Update+of+the+Breast+Cancer+Follow-up+and+Management+Guideline+in+the+Adjuvant+Setting

Note: "The use of CBCs, chemistry panels, bone scans, chest radiographs, liver ultrasounds, computed tomography scans, [¹⁸F]fluorodeoxyglucose-positron emission tomography scanning, magnetic resonance imaging, or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine breast cancer follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination."

Titan

Being triple negative....I guess we all wonder if we shouldn't have a little more follow up care..I wonder that myself...but...I don't..every 3 months for the onc, every 6 months for the BS...This means though that I am seen every 3 months...plus every 6 months I see them both...I also know what to watch out for...they go through this with me every time...also I have my vitatmin d levels check twice per year.

I just saw the Onc on Tuesday...very thorough..checks my liver, heart, lymph nodes..lungs..and we talk..alot.

Livinglarge..if you want scans they would probably do them for you..just ask...

livinglarge

Nastazia - wow that sounds like a lot of follow up testing.  I assume you have a lot of unusual symptoms driving all these test or is this just normal for your onc.  I was thinking I should have a chest x ray or blood work.  Not thinking a PET scan.  But I am quickly getting the impression nothing is really normal.

Luah - Thanks for the guidelines but think they still leave a lot of subjectivity in the follow up process.

Titan - being TN just stinks.  It feels like we just get to sit and wait to see if the other shoe drops. Did you ever notice when you say your TN people just have that oh too bad for you look on their face.  I did ask about having scans and he said I look great and that research has shown that having scans at this stage does not change the survival rate.  Now there is answer that makes you go hmmm.

I think I just want someone to say the nightmare is over.  Reality is I know it will be with me for the rest of my life.

This is a great site.  A great place to talk to people who have and are still going thru this nightmare. 

Titan

Livinglarge..totally agree with you on the comment about wanting  the DR to tell us..Ok..you are good to go...you don't have to come back here anymore.....I think we will be followed for a very long time....

A co-worker of mine is TN...she's about 6 or 7 years out..maybe more...anyway she still has to go once a year...but...her ONC has told her that she is is pretty much out of the woods...

livinglarge

Yeah - love hearing stories from TNs that they are past the golden year and are doing fine.

Towny

I hate to break the news. but I would guess the insurance company maybe dictating what test the docs are doing!!!!

I have great insurance so I got scanned all the time. Thank God I did we found a mestasis... by PET scan I had NO symptoms!!! My blood work of course relfected something was going on!!!

I have GREAT insurance so I have gotten all kinds of scans and screenings!!! I would defintely re think not having any tests or any bloodwork no matter what kind of Breast Cancer we have!!!

If you have dense breasts you really should be getting an MRI and ultra sound.. especially if you have already had BC!!!! We all must be proactive. Check on your insurance to see what it will and will not cover!!!

Check out areyoudense.org

livinglarge

Towny - Sorry to hear about the mets.  We seem to have been DX around the same time in 2009.  Did you have mets at your original DX or did your mets occur 4/11?  

I have pretty good insurance and coverage has not been an issue.  I was told that studies have shown having continued scans does not change the outcome and there was a concern with regards to exposure to all the radiation.  My onc says I look great and believes the test are not required.  I am just concerned that sometimes as you mentioned there are no symptoms.

I had a BLM so dense breast is not an issue.  I do feel fine except for some random aches in the same spot where the BC was located,  I have been thinking it was scar tissue as everything is still healing from BMX, TE and inplants.

I don't know just looking for reassurance.  I was also told cancer markers are not accurate and given from what I have seen on other threads the counts/markers are all over the place.  

Once again I am left confused. 

nastazia_s

Towny , PET CT didn't alarm for mets to check?

How did you find out?

Towny

My ONC... did routine scans!!! That is how we found little tiny cm of hypermetabolic activity!!!

NO PAIN!! NO SYMPTOMS!!!  I was glad we were doing scans.. It was a PET scan ...It was found early and it is still treatable!!!

Just think if I had waited until this stuff started popping up which it did about two weeks after the scan.. I am on a PARP Trial now and am praying this nasty stuff will go away.  I am having a tough time with my breathing.. but everything else is working very well.. Even me, I go to work between all this crazy stuff. I do not want to scare you but..... please learn from my lessons.. What harm is a scan every 6 months??? All the chemo and everything else you have been through!! Please!! Tell the doc you want to be scanned.. Also you should be gettting CTC blood work done. That is a very good test to determine if something is going on. Cancer Cell  Tumor Search....And they all say the tumor markers are not accurate until you find something than they say OH Yes.. look at your blood work. It is confusing!!! So be your own advocate!!! Keep in touch with your body!!! Understand the lymphnode system...

I am just telling you what happened to me.. take it for what that is worth. We are all different.. I have heard that a thousand times.If you read Dellmonica her TNBC occurred in the same place as mine when it came back... I spoke to another woman at the onc office.. She has TN and it came back in the same place as mine.. The clavicale, the sternum area.. It is hard to tell because of the radiation  and the scars!!!

I was clear from March 2010-March 2011 than it came back... I enjoyed every minute of being cancer free... Now I am still trying to enjoy life.. just moving a little slower!!! and not so far from home...

Hope this helps.. good luck.. I know it is like jumping off a cliff and hoping there is someone down there with a net.. we all know what you are going through

OtraVez

For what it's worth, my doctor dropped scans down to twice yearly after 2 years, and once yearly after year 3.  Years 4 and 5 required huge fights with my insurance company, who also fought a PET after my recurrance last spring (that's right, AFTER a new diagnosis).   Blood work was less of an issue, but the scans are really what I care about  - my cancer did not appear on a mammogram, even though we could see that something was wrong with my breast and nipple.  

 I also learned that some folks have assumed that if I get a scan, it means that the cancer came back.  Others ask me if I'm "still" ok (sometimes three times, like I was lying the first times they would ask!), even during the 5 years I was cancer free . . .  and no one was more suprised that my docs (Onc, Primary, etc.), who'd seen me 3 months before my second diagnosis, and declared that all was fine . .  . 

livinglarge

OtraVez - Clever user name.  I can't believe the insurance company fought a PET scan after a recur.

Towny - heard great things about PARP and I am real glad to hear they caught it in time.

After reading some of these posts I think I need to call my onc and get some peace of mind.  One thing for sure is there is definitely not one standard that all onc are following.  Guess htat makes sense so no two cancers are the same.

Thanks for all the feedback.   

yellowdoglady

I think you asked if a PET/CT is a regular thing?  It is.  Why do it?  Well, it is to save your life.  Not everyone needs or wants that but for those of us at high risk, it just has to happen.   

livinglarge

Correct - I was inquiring to see what everyone had done during their follow up visits.  I have asked twice for scans and was told I didn't need one as they found that they do not change the outcome (I still have no idea what that really means but have heard that from two separate doctors).  I would feel better if they did something to look inside the body even if it was a blood test before just telling me everything is ok.  Oh and that I look great.  I am sure I can get them to do the scans if I persist but was trying to get a feel from other BC patients to see if there was a norm.

Yellowdoglady are those golden retrievers in your photo.  How many do you have?  I have one and work as a foster for the rescue.  Absolutely fantastic dogs. 

barbe1958

livinglarge, 'their' thought is that it doesn't matter if/when they catch a recurrence because that still just makes you a stage iv. Kind of silly, eh? I'd like to catch it before it hits my liver or brain, please! They say it's better to not know and live normally until symptoms demand a second look. I kind of know what they're saying, but they don't realize we DO worry!

livinglarge

barbe - I think that is what they are trying to tell me but I'm with you I think I rather know sooner than later.  Maybe I am wrong but if they catch it early they have a better chance of containing it right.  Understanding that will still make you stage iv, but rather be ahead of it.

I really think my onc wants me to just go about my life without worrying (they do not understand we will always worry).  Either way I am living every day to the fullest and I am very grateful for everyday.  

barbe1958

My DH was diagnosed with 3 inoperable brain tumours. He quit his very high paying job and went into real estate which he thought he would like better, but kind of bombed. We had to move and change our entire lifestyle after losing his very good income. When we went back for the follow-up a year later, the neurosurgeon said "Huh....they haven't changed. I hope you didn't make any life altering changes." Doi

livinglarge

OMG.  That is awful and how scary.  I bet you and DH learned a lot during that year of uncertainty to really put everything in perspective.  Something about having cancer or any life threatening illness makes you rethink priorities.

It is great news that his tumors did not change.  Hope he is still doing well and has picked a new career.  Not sure real estate has rebounded enough yet or at least I know it hasn't in Florida but Texas seems to be picking up (or I should say just holding on).  

barbe1958

living, he ended up driving a CAB for 5 1/2 years!!! Then we moved to a 'lifestyle' community and he is the Marshall on the golf course we live on. Whew! Very hard to get a job when you're 61 and look it!

livinglarge

It sounds like you two have been on an adventure.   And living is a wonderful thing.

I am not sure what a Marshall on a golf goes is as I never learned how to play.  I don't have the right temperament for the game.  I get frustrated easily and only could imaging golf clubs flying Either way that has got to be different for him (and you) to have made all those adjustments over the years. 

barbe1958

I actually enjoy golf, surprisingly, as I am not a patient person. But I like pool too and with golf the balls are smaller and the holes are bigger! The Marshall is the 'boss' and keeps everyone moving so no one is waiting for idiots ahead of them. He also stops illegal drinking and horsing around. He gets to ride around all day with his red hat and flag on his golf cart and feel great. He's out in the sunshine and making minimum wage but is happy. That's the important thing.

Adjustments? Are you kidding me! We haven't been able to pay a gas bill so have had our gas turned off since May 30th. No hot water!! Can you say cold shower? Good thing it's summer, eh? We have a settlement coming from his mother's death that will cover the bill and give us a bit of a buffer. Yet, life has changed dramatically....and so have we!