I never had any scans and want one!

lmcclure4477

I was diagnosed triple negative in January 2013. I had a bilateral masectomy and had five lymph nodes removed which were all negative for cancer. Prior to surgery I had a breast MRI, chest X-ray and blood work but no PET or Bone scan. I am stage 1A and I am almost finished with AC and T chemo. I don't need radiation. I asked my MO if I would have any scans after I finish chemo and he said no, only if blood work shows something or I have symptoms. How am I supposed to feel cancer free if I never had scans? Anyone else never have scans done?

Luah

I understand your anxiety. For what it's worth, I had a bone scan, abdominal ultrasound and chest Xray - this was just after diagnosis and BEFORE surgery... standard practice here... the rationale being that if there is any sign of spread, surgery is out and the patient goes straight to chemo. I have no idea why you wouldn't have received such scans (very small tumour?) but as you are (almost) already through treatment, it's not too surprising to me that you will be in the boat that most of us are in in follow-up care, which is to investigate and scan if and when symptoms occur. Evidence suggests there is no difference in outcomes whether one is scanned or not in routine follow-up for early stage BC.  

Also, scans do not pick up random floating cancer cells anyway. And regretfully, despite how docs like to phrase things, I don't think any of us has proof of being cancer-free/cured anyways. 

lmcclure4477

I don't know why I didn't have any scans prior to diagnosis either. I plan to ask my MO and BS when I meet with them. I did have a small tumor: 1 cm and clear nodes and clear margins. Maybe they would've done a scan if I had it in my nodes or breast tissue. Who knows, but I would feel more confident knowing it isn't anywhere else. I do understand the concern of exposure to radiation and that the treatment wouldn't change if the cancer spread already.

SewStrong

Imcclure, It sounds like you and I are at the same place. I would feel better, also, if I had scans. My invasive grade 3 triple negative carcinoma was found by mammogram. It was 6mm after surgery with clear margins and no node involvement. My question is: If the tumor was invasive and it was found on June 11, 2013 already invasive, how long before that date was it invasive? Months, weeks? If it was invasive and my surgery was one month after the mammogram, then my onc said it had a chance to get into my bloodstream before it was removed. He enrolled me in a triple negative clinical study in Indianapolis at IU Cancer Center. I go Friday for the first consultation. I think in the clinical trials, they will give more tests than we get from our oncologist because all they are studying in this trial is triple negative breast cancer. Possibly, you can see if you can get in a trial. I'm just as worried as you.  God bless you.

snoopysyl

I am new to this site, but can't believe I'm not the only one that feels this way. I was diagnoised June 2010 with DCIS and infitrating ductal carcinoma which was caught very early and was 1cm and no node involvement. I did have a questionable margin , but was told that they would cover it with a few extra boosts of radiation. I chose to have a lumpectomy and ended up having 40 radiation treatments. I was told I had a high grade (3) agressive cancer. I did have a breast MRI pre-operatively, but after my radiation the only thing I was told to do is have a mammogram every 6 months which I did twice and then they put me on yearly mammograms. Out of the blue last week I received a letter saying it was time for my 6 month mammogram??? When I called, they told me that I was still supposed to be on a 6 month schedule. For the past month I have had a headache that I can't get rid of. visual changes, dizziness, instability, and have blacked out for a few minutes about 2 weeks ago. I called my oncologist and left a message about these symptoms and never received a return call. I finally called them back after a week and when they returned my call, they told me to see my PCP since my tumor was so small they were sure it was not cancer related. Chemo or any other treatment has never been discussed with me.

SewStrong

Snoopy, I am going to pray for you tonight. I will pray that you can find a doctor for a second opinion that knows what's up. My tumor was only 6mm and I started chemo Monday, Aug. 26. My surgeon didn't recommend chemo, so I went to a medical oncologist on my own. He agreed with me and sent me for a consultation at IU Simon Cancer Center in Indianapolis, IN. The specialist in TNBC there agreed with both of us and I am so relieved. I have Triple Negative. My tumor was found with mammogram and was already invasive, as yours is. I'm not sure what you have, but TN is aggressive, recurs in the first few years, and there is no targeting medication for it like for positive cancers, inwhich women take a pill for 5 years. You have to push your way through sometimes. Don't let up. Start researching different doctors until you find one who will hear your case. THis is your life. I had a lumpectomy, sentinel node disection, and now chemo (Taxotere and cytoxan). God bless you.