WHATS NEXT?????

justpayton1

Here is my condensed story

Dx in Feb

TX 8 rounds ( 4X AC 4 X taxol ) dd

L Masectomy in July

33 rads....finished 10/2/2009

I saw my onc yesterday and he said he will see me in 8 wks for blood work and then to discuss the surveilance...

Could anyone give me an idea as to what could be next for me?

My onc has not been drawing blood for markers is that normal for trip neg?

sftfemme65

Hi there.  I have discovered that not many doctors us those markers on bc patients.  they dont seem very reliable actually.  I know there are women that got mets and the markers stayed normal and others that went up but no mets.  My onc draws them but doesnt take much stalk in them.  Also, I dont get regular scans unless Im having an issue, like now Im having dizzy spells and pressure in my head, they think its my sinus's but Im insisting on a brain and sinus scan because Im paranoid lol. 

I personally think scans are a good thing but every doctor is different.  My onc is following up with me every 3 months for the first 3 years.  then every 6 months til 5 years. and then yearly.

Let us know how your check up goes.

Teresa

justpayton1

sftfemme65- Thanks for your reply.

I go back in 8 wks.. to discuss in lengh the next part(s)

Iam  BRCA 1 positive and sometimes I feel like they are more concerned with that than my primary bc. I lost my Mother in 76 and than my Grandmother in 93, so I am most concerned w/ my primary bc. I feel like they should be watching my lungs instead of waiting for my body to heal so they can take the rest of my parts.

I am also suffering from headaches. Feels like I spent the night drinking but I talked to a woman while I was doing rads and she complained of the same thing. So maybe the chemo??rads??

Who knows?? Now I know that tx are different and people are living longer but given my family history I feel like they should keep a close eye on me.

I guess its the fact that my onc never lets me know were I am headed, its always we will talk about it after chemo, after rads, now its in 8 wks after I have time to heal..

Its the not knowing thats driving me nuts...

At least w/ your reply I have an idea, thanks

ShondaE

I am seeing my Onc every three months as well.  She does blood work and sets up a different scan each time I see her.  She has also told me if I feel the slightest bit off to let her know and she will check me out and run whatever test or scan is necessary to put my mind at ease.

Shonda 

smithlme

Hi justpayton1. I'm another triple negative and I am also BRCA 2+, which wasn't discovered until after my second BC diagnosis. My first diagnosis was triple negative. I chose to have a unilateral mastectomy on my left side, followed by 4 dose dense AC, then 4 dose dense Taxol. 7 1/2 months after I completed chemo I went in for my annual mammogram. Because of my history, my doctor decided to biopsy what she swore was just calcification. Thank God she did. It was early DCIS, which was ER+/PR-. I chose to have another mastectomy on the right side and had genetic testing done. With the recommendation of my geneticist I have also had a preventive hysterectomy w/BSO...everything out. I am trying to stay one step ahead of my genetics.

When I was diagnosed the first time, I was seeing my Onc every 3 months. After my second diagnosis and preventative surgery I see her every 6 months. She doesn't do lab work or order scans unless I have symptoms. I have my list of items to be aware of and know I can get her help at any time.

My oldest sister is a 20 year BC thriver and is also BRCA 2+, which she found out after I tested positive. She has also had preventative surgery for ovarian cancer. Our other sister has chosen not to get tested. I have 4 children and 3 grand-daughters, so far, and they will each decide when/if they choose to have genetic testing done and what options are available for them.

There's a great website called FORCE, which deals with genetic BRCA 1 & 2 breast and ovarian cancer. www.facingourrisk.org. It can be, and is, a scary lot of information to deal with, but the knowledge we gain is powerful...

Linda

chinablue

Typically, is it the chemo oncologist that monitors us after we are done with chemo and rads?  I am so confused.  Some say it is the bs or is it the rad oncologist or is it my internist?  

justpayton1

It seems to me that it will be the Onc..that keeps an eye on you.

I met w/ my rads onc for a month follow up and will see him in 6 months..My Onc I saw on Oct 27th and he wants to see me in Dec..( 8 wks)

Titan

I see the Chemo onc every 3 months for two years..no scans unless I feel or sense something is not right...I watch myself like a hawk...if I don't feel perfect I freak but then try to calm myself down....it's sooo hard..but we ALL will get through this...