Calling all TNs

Neoadjuvant was never mentioned or offered to me. In fact, I don't think I even knew it was an option. My BS at MSK just scheduled the surgery; I didn't meet with a med onc until after surgery and, as it turned out, his preference is to get tumors out first.

Either way, I know I struggled with this for awhile afterwards. Since I had never had neo mentioned to me as an option, I wondered if it might have been a better choice. Eventually, I learned to "let sleeping dogs lie", since I couldn't change the outcome anyway.

Basically, my dx and subsequent surgery came so quickly that it was ahead of my learning curve. I found comfort in the fact that I had been treated at one of the best cancer centers in the country and that is how I got my head around it.

I will say that both my surgeon and my med onc seemed to indicate neo was more typically used in larger tumors when the goal is breast conservation. That made sense to me at the time but, as I mentioned above, I have learned a lot since then and the ability to asses a pCR is a compelling reason to have chemo neoadjuvantly.

Me, I just wanted that sucker OUT--- and was lucky enough to have clear margins, neg nodes, and no LVI. So glad to be past all that now.

Janda - look at my signature - not so different from your dx. I finished treatment on December 30 or 31 2009, so am a year out now. Yes it is hard to suddenly have nothing. I was shocked when my onc said see you in three months!!! Just keep posting to get support from a wonderful group of ladies.

went for my 3rd taxol/avastin treatment yesterday...everything went smooth..not reactions ...yah! Wondering when hairs going to fall out...waiting, and anticipating...sort of want to get it over with.  Found wig, but it is a totally different color than my hair...Has anyone gone different..Im usually a sandy blond, and i went dark red!  it puts color in my face unlike the blond ones...lol who knew? 

Had wonderful nurses and spent the day with my mom...Is it normal to take 7-8 hours to do an infusion...I met an amazing lady whose been doing different rounds of chemo since 2003...Has anyone every participated in a Susan G Koman marathon?  she was telling me about it and it sound interesting...

Gillyone:

What chemo were you on? Did you have chemo before sugery?

 It looks like some of you been having av lot moore chemo than we have in Europa. I have been reading about some of you in here having a lot of chemo. Just wondering what the standard treatments for TN with positive nodes are for you in the states? Lookes like you don`t use Fec? And why are some of you on Xeloda or Avastin, if it has not spread? And another question: How long will thoose bone pain after taxotere be. Finished my last taxotere in november.. Feels like i having pain all over:-)

HeidiToo:  The way it was explained to me, they usually only do adjuvent chemo  when it is necessary to save the breast, like in my case

MBJ- don't you mean *neoadjuvant* chemo? Neoadjuvant would (hopefully) shrink a larger tumor and make a successful lumpectomy more possible. That's how it was explained to me.

Swanny & Jen C: Thank you, I am still feeling good on day two and will be going to see Jersey Boys tonight to celebrate the end of the poisoning!

Hieditoo: Yes, that cancer blood test certainly does sound exciting!  My cancer center is one of the participating sites.  I asked my oncologist about it yesterday, but she said that they will only be doing the trials on people with more advanced diseases.  Figures.  by the time this goes public most of us will either have reached 5 yrs with NED or had the dreaded recurrance... 

HeidiToo:  Lol!  Chemo stole my brain and I am not sure when she will return!

Moe:  I have a red, black, blond and one to look just like my real hair.  Go for it!

Blindsided:  congratulations on being done!!!!

Moe - I was in the Avastin trial as well, but was receiving Placebo.  My appt was at 8am, which was for blood work, then when the blood work came in I saw the onc, once he cleared me I had chemo - I usually got home around 2p.  The premeds took about 45 min, the Taxol about 45 min - 1 hour and the same for the Avastin.  They slowed my infusions because I didn't seem to do well at a shorter time.   Towards the end my port started having blood clots which had to be thinned, causing another delay of an hour or so.......

Lovelyface:  I am so sorry that you didn't trust your surgeon as I think that is so important for our peace of mind in all of this!!!  Did they at least do an MRI before surgery?  Also, the test run after your surgery would have shown something if there was anything there.  I had only two taken out and they only did this a a precaution because they didn't thin it was necessary.  I have to say, my third opinion and my final choice of doctors was so thorough compared to the other doctors I went to.  I wish this was the case for all of us.  I hope for your peace of mind your insurance covers the test, too. Hugs.

Lovelyface:  It sounds like your BS did a thorough job--they stage the surgery with those MRI's--- and I am glad that you trust your radiologist!  Good luck with your sessions and I am sure it will be over faster then you can imagine.  Hugs.

Fighter- Progress... see, you are getting there! Yeah!

LovelyFace -

Re yearly PET scans for "all TNs."  You also must realize that they can light up like Christmas trees by many things other than "cancer;" thereby forcing many women to have false positives, and/or needless tests, biopsies, etc.  So a yearly PET is not the answer, unless there is a reason or symptom to have it in the first place.

LRM216 -  My Med. Onc. had told me once that he wasn't planning on doing yearly PetScans.  I wouldn't want to go through false positives, that would be a nightmare.

I have an appointment with the Onc. office on the 13th when they will teach me about Aridimex/Zometa.  As they haven't given me anything yet for how they will do survelliance on me.  I am hoping they will give me a calendar or something, so that I can keep track. I asked my med. onc. how he will know how well I am doing. His answer - weird - "by my survival".  I wanted to hear how he was going to monitor me, would it be blood tests for tumor markers, or just symptoms or what?

Anyway, LRM216, I did go through Angel's posts and read them as I am so concerned how she could be so well and NED in Nov./Dec and then just pass on like that.  She said she was NED, all clear on 10/15/10, however, they didn't do scans where she lived.  She saw her BS and gen doc every 6 mos.  She was BRCA positive and did yearly MRI's.  Do you have any more information about why or what happened.  I went through her posts, and it was really chilling to read them, doing so very well, going through all the emotions we all go through each day as we write our posts here.

TNBCRuth and LovelyFace: 

I know it feel terribly frightening to you right now, we all went through it after our treatment ended.  I walked around numb for quite awhle, petrified almost every hour of the day and night.  It eases up considerably.

Your biggest rule of thumb will be the "two week test," and that is anything that is bothering you for two weeks or longer needs to be brought to the onc's attention and between the two of you, it will be decided on whether or not to scan.

Every three month checkup should include your bloodwork at each visit.  Mind does NOT test Vit.D every month.  It's a very expensive blood test, and she does it every 6 months.  My onc also goes over my body -especially all the node areas each visit.  You should be having mammos every 6 months - that being one on the cancer breast and the next one on both breasts.  Anything else minor such as a cold, etc, that's when you call your primary care.

All each of us can do is have faith in the treatments we chose and were given, and live your life believing that you will remain cancer free.  That's all any of us can do.  It is what it is, and each of us has done what we could.

LovelyFace - I truly believe Diane (Angelsabove) case was one of those very agressive forms of TNBC (It has definite different subsets - there is not just one TNBC - and they are finding that there are probably even more than they know of right now)  Some can be extremely agressive (true basal type) and resistent to treatment, some not as agressive and responds to treatement (basal-like), and then then less aggressive is the true triple negative).  A few TNBC gals had their cell types read on their path reports, most do not.  (I personally think it should be a given that each pathology dept doing a path report on TNBC differentiate just what type it is, but at this time it is not, in fact most labs do not do it as a standard test).  Since Diane's cancer came back just months after her treatments ended, I would certainly have to think that her type was resistent to the chemo - and thus more aggressive, as it was from that point on that she began to worsen.  Even when CTCA claimed her to be NED early December, it was just days before they then found it in her nervous system (spinal fluid) and brain, so it spread fast - really fast.  But as I stated before, in the two years I have been on this board and the TNBCfoundation.org board, I have never heard of anyone's death happening as fast as Diane's.   Can we ever understand why and how fast it destroyed her life and tore apart a family?  No, I don't think there will ever be an adequate answer to that, but I don't find it to be the normal outcome of triple neg cancer either.

In time, I promise, you will not be as "raw" as you are feeling right now, and I promise you in another year, you will be writing this to newbies undergoing their treatment as well.  Promise!