Confused Follow Up Onc Visits

Again, I am sorry if some folks like to come here to talk about how freaking awful their lives are and how they will never get over what cancer did to them.

I'm not keen on having been diagnosed myself and I didn't much care for the treatment, but I will stand firm on my observation that the experience does allow one to focus on what is important and to prioritize accordingly.  Those of you who have demanding jobs can probably understand.  Not to say that having a large family isn't hard work, but those who work inside the home are less likely to be asked to work outside the home on evenings and weekends to keep their jobs.

I'd rather focus on the positives than the negatives.  My employer was wonderful when I had to take days off here and there to complete my treatment.  My Sweetie held my hand when I was cut and poisoned.  I was able to do my radiation first thing in the morning and then head into work.  Life got better.  The hair grew back.  The bills got paid.  I developed lymphedema, got it handled and am managing it well.  Married my Sweetie of 8 years last fall.  We plan to live happily ever after, but I do get checked regularly.  I know if I get sick again my shelf life could be shorter than I'd like.  I know my handwriting is worse than ever after I had a needle slip during chemo and burn my dominant hand from the inside out.  But I'm not asking for sympathy.  I just can't tolerate being attacked if I say I'm enjoying life after that bad stuff.

I'll pop in from time to time, but you all can deal with what these boards have become.  This used to be a place for TNBC folks to get together, but now it's a free for all with people with a totally dissimilar Dx coming in and complaining about how hard it is to tolerate treatments we cannot even be offered.  People with a 96% cure rate complaining about what it took for them to get to 100%.  I just can't relate to that.     

Barbe...TN's get the "kitchen sink" thrown at them no matter what stage they are.

I only brought up statistics because inaccurate ones were thrown at me. You all hve my deepest apologies for that case of bad manner, for feeling I had to reply at all to any of this  and for intruding.

living: Yes we seem to have strayed far from your OP. FWIW, I've only had a mammo and MRI since treatment, and a neck CT only when I showed suspicious nodes (and all was good). No blood tests except for what my GP does annually.

I am very new to this TN - I was dx'd stage iv 2 years ago and treated with antihormonals and attanined stable with mets to the bone - spine only.

Then a weird thing happened...I had some sort of an attack and after 8 days in the hospital, I came out with 'seedlings' in my abdominal wall and the receptors flipped to triple negative. I have started chemo but this is really weird...and a puzzle as it surely should not be happening.   I can no longer treat with antihormonals, chemo is my only option.  And I understand that with the TN, it limits the types of chemo that are available. 

Followup visits are interesting - I would just like some answers as to how this could have happened - being stage iv was hard enough to deal with - now its triple negative?  It doesn't really leave me feeling very optimistic - I don't know what to even ask - what does triple negative do to the already terminal prognosis?  I am trying not to be scared too much and hope that the chemo works.  I really hate this disease.

lowrider54:  I am sorry you now have to worry about TN.  I was wondering about your HER2 status.  I have heard sometimes HER2 testing can be unreliable--there are two tests I believe, and one is more reliable than the other.  If you were HER2 positive, you would be able to take Herception. Is it possible you could get a second opinion?   Perhaps at a different lab?  Just to confirm that you are for sure TN.

Also, have you already had Adriamycin?  

(Edited to change name) 

livinglarge:  I am sorry, I had meant to direct that post to lowrider54, and I put your name instead.  I edited it (chemo brain).  Yes, it is strange to go from ER+ to TN, but I have heard of it happening.  I read an article on this site about the reliability of HER2 testing and it makes you wonder if sometimes people are given the wrong diagnoses.  It would make a big difference in treatment because of herceptin.

I was unable to get the HER2 test on my final pathology, so hopefully the inital biopsy path was correct.