Calling all TNs

Hi guys, it's been awhile. Had to take a break (especially after the loss of our dear friends) and try to move on but the cancer keeps pulling me back. Bak, so sorry you've been through such a rough time. Hope you are getting better.

Got a senario and curious what others would do. After 4 seperate tests done on my originial biopsy,  (3 of which came back as equivocal or unclear, 1 of which came back negative) it was decided I was Her-2 negative and triple negetive. I went to my new oncologist for the second time last Monday. He informs me that he had my internal node tested for Her-2 and it came back positive, so he wants to start Herceptin. Here's the catch...a note on the new pathology report says: node demonstrates a positive result for Her-2, however, it should be noted the fixation time is unknown and may not be between the recommended 6-48 hours. This has been known to lead to a false positive response. 

So...I am torn between thinking, If there is something else that could work I should use it and the fact that since it has no effect at all on Triple Neg then if this is a false positive I am doing a year of this for nothing! Doc said, "Her-2 stage III has a very negative prognosis without Herceptin, so I think we should assume the positive is correct and do it." IDK..second opinion maybe? request testing on other tissue samples removed? Just accept my fate and go with it? IDK...my head feels like it would explode.

What would you do if you thought you were done and then the docs said...maybe it's this other kind...let's do more? Thoughts? 

beautiful!

So beautiful and peaceful.

Take me there Dear Lord!!! Stunning!

What a breathtaking view! 

KS - not a nice feeling to think you are rushed by your oncologist and that she's not paying enough attention. However, many of us do not have routine scans. I believe that finding mets "early" with a scan or "later" when you have symptoms has no affect on prognosis. I had a MUGA before chemo, but not after. I had CT and MRI before chemo but not after. I have not had ANY scans since tx except for a bone density scan. Nor does my onc do tumor markers. So although you may not be happy with what you are not getting, it is pretty standard.

KS   It has been a running joke (not!) with my husband and me that every single doctor says,"Don't worry about it," to nearly all my questions.  If I'm sitting up on the exam table I'm tempted to kick them where I would get their attention.  I'm sure they see lots of scared women asking the same questions, but they shouldn't dismiss us as histerical broads. 

I've been getting lots of follow-up testing: multiple PET/CT scans, xrays, unltrasounds, mammograms.  I'm starting to wonder if it is because my cancer center owns all that technology and needs to pay for it.  I start (mentally) planning my funeral for a week before test until I hear a good result.  So far,so good.

Catwhispurrer- I had my port taken out with local and did fine, but they offered to knock me out with the same stuff they did when they put it in.  So tell them that you want to be out for the procedure.  They should have no problem with that.  As for the radiation: I have one boost left and I am happy with my decision to go ahead with it. My tumor was also on my left side and I had a mx and still went ahead with the rads. I had 33 treatments, 28 whole breast and 5 boosts.  I asked a question on here whether I should go ahead with it and with the help of all the ladies (THanks Ladies) I made the decision that I should. THey helped me realize that we have to hit it with the big guns the first time. 

Lisadi1963- I had 12 weekly taxol then 4 AC and it did get worse. I had the old schedule of A/C, once every 3 weeks not dose dense like you are having.  I didn't want to finish it, it was hard, but I am so glad I did finish.  You will get through it! Heck, you only have 3 more. you're almost there!  

Hi Cat - Sorry that Taxol wasn't kind to you.  My 12 treatments were a breeze, especially after AC treatments.  The minimal neuropathy that I had towards the end is now gone, so hopefully yours will disappear also.  Regarding radiation, ask if your center does it in the prone (face down) position.  This minimizes exposure to the heart and lungs.  Not all centers have the equipment to do this, but if you are concerned and have choices of where you can go, that is something to consider.  Studies have shown that radiation dramatically reduces recurrence, so the benefits really outweigh the risks.

Regarding port removal, it is normally done under local, which they inject around the port site until you are numb.  In my area, they believe in getting it out as soon as it is no longer needed, since it is a potential source of infection and prevents you from having any dental work until it is out, and also avoids you having to return to the center to have it flushed.  All the best to you!

My port was removed a couple weeks after I had a clean PET scan, which came two weeks after I finished chemo.  Keeping the port for a long time must be one of those regional differences. It seems kind of silly when not everyone is required to have it, to begin with. 

I have a follow-up appt with my MO tomorrow.  I am not expecting any surprises, although I'll feel better when I get the results of the CA 27.29 test, which probably won't be ready before next Monday.

My birthday is Saturday.  Last year at this time, I didn't think I'd be around to celebrate this year's birthday.  Instead, here I am, in relatively good shape, and looking forward to partying on Saturday with my children and grandchildren.  I've actually not ever celebrated my birthday with my grandkids because we always lived so far away.  This really will be a beautiful birthday celebration!  Yes, indeed!

LuvRving - that sounds like a wonderful birthday celebration!

Oh and LuvRVing - you have a great birthday celebration and yes you will be around to have another next year.  In the meantime enjoy this one with your grandchildren. Hugs. Annie  

LuvRVing - happy birthday early.  Hope you enjoy spending your special day with your grandkids!  

Mine is on Thursday (the 26th) and I'm taking my 12year-old daughter to Montreal for the weekend to celebrate. Can't wait!  I'm taking her out of school on Friday and we're flying there for three days/two nights. I'll be 48.

Enjoy your Birthday celebration, RV!! nd you too, Sugar!

Wish:  I flew several times with port/TEs/ and a scarf on my head.  No problems with security or the body scanner thingy.  At one airport-I think it was Tampa, I had a female TSA agent that had to do a pat down on me.  She quietly advised me that she would be touching my scarf and my head.  When she was done she leaned in and whispered in my ear "good luck, honey"  I also wear a sleeve on my arm to try to prevent LE.  Talk to your BS or PS and they can right a script for the sleeve and insurance should cover a portion or even all of it.  Make sure you get measured properly for a good fit.

Gilly:  Yep, I am on the road to cataracts, too.  I am 52!  I already have an appointment to see an eye surgeon for surgery consultation but not until September.  I absolutely dread the thought of another surgery!

Sugar: Have a great time in Montreal. What a nice thing to do with your daughter!

Cocker: With taxol, I had some nails go black (and eventually come off). And my hair started growing back, that was a good thing!

Re scans, I had a MUGA after chemo - I guess to see what damage the AC might have caused. There was no change in my result. I have only ever had scans when a symptom popped up. Personally I would not want PETs and CTs all the time... it's not only the anxiety, but the radiation mounts up. Most research indicates that recurrences present at intervals anyway... and there is no difference in outcome.