Follow Up Recommendations

Anonymous

Marsha - I think it's good that you've decided to hear what both have to say at your appts at the end of the month. I'm hoping you will come up with a plan that's comfortable for you, both medically and financially. You raised some very good questions. Let us know what they say...

marshakb

LOL Colleen, the trans vaginal was this instrument like a wand with a golf ball on the end!  UGH  I had that done since I was starting tamoxifen for a baseline.  If you are not BRCA (and I hope your not!) then you might want to complain of some kind of symptom so you doc can order it for insurance to pay. 

Anne, you had a tumor marker done BEFORE you were treated for BC that was low????  WOW I guess you don't feel that test is valid!  Thanks for you 2 cents!

snowyday

This is an interesting thread. Marsha I'm sorry someone put down your question, I think it's a good one and very important. I've finished rads two weeks ago and then it hit me, I'm triple neg without clean margins how are they going to know and I'm driving myself bonkers some days worrying. What I find strange is that when I was being treated I felt safer and now that my treatment is finished I'm scared.  My Doc. actually she's my back Dr. and fantastic has ordered bone scan, colonoscopy, and endoscopy because of some other problems I'm having so I'm so lucky that she understands my fears.  I will feel better after my bonescan and as much as I don't want a colonoscopy or endoscopy I've got bowel narrowing and they want to know why and I'm verping (that's what I call a mis between a burp and vomit) so she wants to get to the bottom of it. For myself if there are blood tests I can have for the next while every three months that will help me to fiquire out if it's come back or not I'll take them.   I will worry anyway so maybe it will help to calm my fears I wish I could put it out of my head but can't maybe after a year or so. Best of health to all of you. Pearl49 

marshakb

Pearl, LOL at "verping"!  Can I steal that from you??  I feel EXACTLY that way every time I have a doc appt.  And I understand how you feel, once active treatment is over, ???????  I'm a little ahead of you, just over a year since dx and have started getting my life back.  Before all this I did alot of community theatre and just recently was cast in Always.....Patsy Cline at our theatre.  It's a huge role, with 22 performances in 25 days.  Definately helps keep me from thinking/dwelling on BC!  So find something you love to do and immerse yourself in that.    Hugs to you!  Marsha

lv2cmp

Oh Amy ... why did you say that about the hoping the person who posted wasn't a medical professional?  You know exactly who it was.  I was being sincere when I posted to Marsha.  I truly didn't read anything into the other post.  I'm so scared that my dx went from a positive outcome (until I reread my path report) to you're basically f--ked with 3 month regular checkups.  I was really hoping for some real input and I wasn't reading hard to find other hidden motives.  I'm sad, distraught and suffering from things going on in my life you don't know about.

Bren-I do not read any breast cancer board but this one so therefore I have not read who it was nor do I care because obviously thats not somebody I would want to be around.  I simply meant that we don't need people like that when we go to our doctors for answers. Sorry if you felt I wasnt being sincere in my answer.  I just know that Marsha posted her question and I was in shock that somebody would make fun of it. 

Amy

beth1225

Marsha, I always ask tons of questions and remember way back when you posted about the roll of questions you showed your doctor.  I have talked to my onc before my PBM and after and again since they discovered DCIS recently.  My onc is not going to see me until after my recon is all over.  She did a CA125 when I saw her a year ago and it had not changed overly much.  After an ooph, the risk of peritoneal cancer is greatly reduced. 

Colleen, I had my first mammo at 25 because of family history and the fact that my dad had bc which is rare.  I also had the testing done and am BRCA2+.  So I also had the lovely TVU and the CA125 once a year.

The financial side of all of this is just as traumatic.  I hate oweing money.  We DO have insurance but our out-of-pocket is $6000 per person per year.  My ps has been wonderful though.  He knows what I owe the hospital, etc. and he said not to worry about what I owe him.  He told me when we are finished, we will work it out.  He said he can some of it off and he has plenty of people who pay for cosmetic surgery so he is not dependent on what the insurance pays.

I have been a wee bit stressed over follow up care and I am so glad you started this thread Marsha.  Thank you.

AlaskaDeb

Hi MArsha -

Good question!

I think it is hard to know who is going to follow what after a cancer Dx.  I am 2 years out from DX and I see my Onc once a year and my rad onc once a year, but opposite each other....So I see one of them every 6 months.  They do a physical exam, but no tests unless I have symptoms.  Unfortunatly, I have never gone 6 months without symptoms of something...so it seems like I am always getting tests!  In between those visits, I see my PCP and my GYN...so I see somebody every 3 months.  All of them do good physical exams of my scar areas (Bilat mast with no recon). I sometimes think this is overkill, and if I didn't have insurance, I might cut back....it's a hard call.

Sounds like you are busy and getting back to the things you love to do...good for you missy

Deb C 

Bren-2007

Thanks for pointing things out to me Amy.  I'm sorry for writing to you.  Please accept my apology. 

marshakb

WOW starting to feel like old home week, I'm seeing SO many familiar names and old friends.  And I do think this a subject we all wonder and worry about.

Deb hey crazy lady.  A good physical exam is exactly what I want!  I've had my baselines for everything and now would like to be like you, busy and happy but not "watched" so closely.  LOL

Well hello to you miss Beth.  Where the heck you been?  I joined BCO one day before you did, very nice to see you again.  I agree with you, so many women who DO have insurance have such high deductibles that it becomes financially a major burden.  Sounds like your PS is a great guy.

Amy thanks for letting us know how your mets were discovered.  My rad onc said it would be a pain that you would undoubtably know was not right.  Don't you have scans coming up this week??  Let us know how they go.  I know you are still in the chemo chair every Friday and you are my hero girl friend.

beth1225

Marsha, I forgot that we joined almost the same time.  So much has happened since.  I did update a little on myspace blog and some on my family website. 

My dad's mets were discovered when he rolled over in bed and thought he pulled a muscle. 

See you all around the boards!

nosurrender

"Thanks for sharing your stories/situations with me.  I actually found my post copied on another BC site with a little bit of a put down for even asking you guys the questions."

Hi Marsha,

I think you had valid questions and I found the responses here very informative. The ASCO guidelines that you posted from the ASCO site were reposted on my site by a member who found the ASCO report interesting reading, as we all do. There was no "put down" of you anywhere that I can see because you are not mentioned any where and the ASCO GUIDELINES are the only thing posted.

If someone found the GUIDELINES to be somewhat lacking in what they felt was enough for surveillance-care then it was a remark about the American Society of Clinical Oncologists, not you. The Guidelines could be cut and pasted from a number of sources.

I hope this clears up any confusion on this issue. Because I wholeheartedly agree, the only dumb question is the question not asked!

hugs,

g 

Primel

Marsha, thank you for the thread, dear friend... it sure brought a lot of infos we all need.  Because I was in the Abraxane/Avastine clinical study (for early stage BC), I have regular checks (blood + urine, no scans, but a heart US every 3 months, then the last one 2 months after last Avastine which was Dec. 12). 

Wishing everybody to do well and feel stronger every day...

Catherine

marshakb

Hi Catherine, sweetie, I'm so sorry to hear you won't be able to make it to the reunion next month!  Dang and I so wanted to eat some of your cooking!  But I know you need to hang with hubby right now.  Talk to you soon.  Marsha

Anonymous

Goodness!   Edge gave some wonderful information on tumor markers.  Getting his insight and explanations is great.  Now I understand why my insurance company doesnt want to cover them.

Im still waiting for my results.  Always does make me a nervous ninny.

nnn

susanmcm

It's been interesting to read this discussion.  I am three years past treatment so I try not to dwell and I would just as soon not have a test unless I had a real problem.  My tumor markers were always very low so my onc said it wouldn't make sense to track them.  I do get CBC once a year. I have liver scans done because I have had hepatitis not because of BC.  My biggest problem is I have to keep changing oncs.  I move or they move.