Aug 13, 2010 01:04PM o2bhealthy wrote:

LilyLou - I am so glad you posted your questions. 

I had my last Herceptin in July and am meeting with my onc on the 18th of August. 

I have worked myself into a tizzy over this appointment because in the past when I asked 'How do I know when I am NED?'  I was told, 'You were NED after your BMX'. 

REALLLLY???!!!!  Then why did I just go through chemo hell and a year of Herceptin??? 

When I asked about 'What is next? Scan's? ect..." I was told "We only do scans if you are symptomatic."  I was not symptomatic with my first dx!!!!  

I am supposed to meet with my onc every 3/6 months for the next 3 years with alternating mammo/MRI each year.  Mammo??? I had a BMX, all the mammo will show is skin and implant!  What about chest wall?  What about Lymphnodes? 

I don't know how to push for scan's and better follow up care because I don't know how to ask or what to ask.  I don't have an advocate who can help me and since I live in such a rural area I am worried about pissing off the only onc in the area.  I have always been so taken aback by the 'because I say so' attitude that I really haven't responded well when I get these 'pat' answers and am now at a loss on how to proceed and stand my ground.  All I know is I NEED to know that, right now at this moment in time, I am NED or not...I cannot move forward with this constant worry and doubt in the back of my mind.

Any suggestions???

Aug 14, 2010 01:49AM LilyLou wrote:

o2behealthy - I'm not very good about being aggressive when talking to my Drs either.  Every time I go for Herceptin, they do blood tests and then I see my Oncologist which is good because I can accumulate questions each 3 weeks.  Last time I asked about a scan and was also told only if symptomatic.  ??  Once you are symptomatic isn't it a little late when it could have been caught earlier?  I am wondering if this is an insurance thing & something they don't want to pay for ??  I continue Herceptin till year end so I have time to bring the subject up again but wanted to have more info on the types of scans and so forth.  

I don't understand how they do a Mammogram once you have had a Bmx ??  I can see an MRI and realize there is still breast tissue to be checked so this is good but a Mammogram??? 

Aug 30, 2010 11:21PM crazylifex3 wrote:

LilyLou,

They don't do mammos after a bilateral, well at least with me they didnt. My Onc told me that they wait and see how you feel. I personally told her that that was a pretty shitty way to have to live... 6 years out and I go in for surgery on Sept. 15th. I found bumps in my mastectomy scar and they did an ultrasound cuz I can't have an MRI because of a heart attack and a stent in place. The ultrasound showed a BIRADS category of 5! I'm just hoping that it hasnt spread.........

Aug 31, 2010 01:22AM LilyLou wrote:

crazylifex3 - How awful for you!  I am so sorry and really hope the surgery on the 15th will get it and it hasn't spread.  Your first time around sounds like a nightmare with the heart problems.  Thanks for the info on mammos after bmx.  Am sending good thoughts and well wishes your way.

Sep 1, 2010 11:40PM o2bhealthy wrote:

LilyLou - I met with my onc and she agreed that after my first post tx mammo, I will not need any more, just an annual MRI.   The reasoning being that now that we know there is less then 5% tissue remaining, mammo's won't show much more then the implants and the MRI would be more productive.  For this I am grateful.   My first MRI will be in Nov.  I will meet with my onc twice a year for basic labs and a physical exam unless I become symptomatic. 

It is a little scary after a year of constant doctors and treatments but I guess it is the norm.

My DH and I won an on going battle with the onc...I have LE in both arms (mild in the Left non cancer side but LE none the less).  I had asked that once my port is removed to have a standing order for foot draws so that I can protect my arms from LE flares.  My onc shut me down and refused my request.  Of course I was so upset I could not think straight and just went home and had a pity party.  Well my DH called and spoke with one of the nurses who went to bat for me and know I have standing orders for foot draw's with the understanding that if they cannot draw from the foot we will have to use the left arm.  VICTORY!!!