A new triple negative friend

Hi Again Neative 3Grade3,

When I was first diagnosed there was a debate about what I should do first, chemotherapy or surgery.  I asked what the concerns were.  My doctors said that if we do surgery first and then chemotherapy, we won't know if the chemo is working because we won't have the tumor to measure to make sure it is reducing in size.  But they said, if we do chemotherapy first we won't know if the cancer has moved into the lymph nodes because the chemo would impact their cells. 

I suggested we do the surgery in two parts;  remove the lymph nodes first to check to see if there were any cancer cells in them. Then we could do chemo therapy to reduce the size of the tumor before my second surgery to remove the tumor. 

This would be breast conserving because my tumor was 3.9 and I wanted a lumpectomy.  After the first three treatments we did an MRI and there had been no change in the size of my tumor.  We stopped the AC and changed the chemo cocktail. 

I was really sad at the time and felt hopeless.  Here I had endured 9 weeks of chemo and lost my hair with no impact.  Then my oncologist told me we would have to add on two extra rounds of the new medication.  I had 9 rounds of chemotherapy in all. 

The tumor did respond this time, not as much as the surgeon had wanted, but enough to feel assured it had responded.  We did the second surgery and got clear margins.  Then I completed radiation. 

My doctors have scheduled MRIs, Mammograms, PET scans and more all coming back free of cancer.Now I am three years out from treatment.  I am really please my ocologist was so vigilant!

Sadie

Good Morning Christina,

It was my pleasure to share.  Are you in the middle of chemo treatment?  If you are I would suggest that after three treatments you ask your doctor to do an MRI to see if the tumor is getting smaller.  That will tell you if the chemo is working on your particular tumor. 

I was stage IIb and grade 3 too.  It was interesting for me to hear how you made your decision and it makes sense.  I know I had one positive node, but I don't think knowing that changed my treatment in any way. We already knew we had to treat this cancer aggressively.

It sounds to me like you and your consultants made a wise decision for you and it was helpful for me to hear their reasonings.  There is always more than one perspective. 

As you take this journey if you have any questions please ask me.  I will always answer them as best I can.

Warmly,

Sadie

Negative 3 Grade 3,

Your are about to start the journey to save your life.  I focused on the chemotherapy as my friend helping me tackle this intruder in my body.  I also did acupuncture.  My acupunturist gave me an Eastern herbal medication called Chemo Support.  I took vitamins too.  I had to come to a compromise with my oncologist about the vitamins.  We decided I would take them but stop two days before my treatment and not take them for three days after.  She was okay with the Chemo Support formula.  She was always amazed at how quickly my blood counts came up.  She now sends her patients to my acupuncturist. 

I also spent time visualizing little fish in my body eating the cancer cells.  Some people imagine sharks or other aggressive things, but I wanted a gentle picture.  My fish were little and gold and very hungry for cancer cells.  This may sound funny but there is a lot of research that shows we can improve our immune systems with a mind over matter approach.

Your "just starting out" has reminded me of some things I did to prepare for the treatments.  If you haven't had anyone give ideas I could offer a few.

Warmly,

Sadie

Hi Christina,

Re the bilat...my BS recommended this approach initially, then gave me the neo-adjuvant option.  The onc had no opinion.  When I told the BS I'd made my decision he said he completely agreed.  He remarked that my rationale was probably more emotional but he felt it was the right approach medically too.  I understood that the lumpectomy/radiation option was pretty well equivalent (in terms of recurrence and survival stats) to the bilat mast option.  I went for the bilat anyway.  I couldn't imagine going through this again frankly.

t

Hi Christina,

I wanted to answer your question about the vitamins.  I took a multi-vit, C, E, Cal w/D., fish oil, and mag.  My oncologist suggested I take glutamine ( I'm not sure I spelled that correctly) to prevent nerve damage in my hands and feet.  Although I had some numbness before I started the glut I don't have any evidence of it now.

My acupuncturist is also a RN.  She worked with cancer patients as a nurse.  She had calmed my concerns about the vitamin debate by reminding me that I had taken the vitamins for a long time.  She said a few months without them wouldn't impact my health much.  I just couldn't come to grips with the fact that at the time I needed my immune system to be at it's best, that I would take away it's supports.

I did understand their concern that they wanted the chemotherapy to get into my cells and stay there for awhile.  I think we came to a comfortable agreement.  I had chemo every three weeks, so the two days off before and three days off after my treatment worked for me.

I thought I'd mention I was a college professor before I went into my private career.  I had the same approach to research as you did.  I read everything, more than once. 

It reminded me of a time when I was working with parents who had just had an infant with special needs.  These new parents would read everything they could and go to every specialist they could find to help their babies.  The intense focus also served to help them with their grief. We called that time of grief as the "speeds."  I was really speeding around.

I looked it as if I was entering this new culture.  I needed to know the language (vocabulary), so I could have intelligent conversations with my doctors and so I could advocate for myself.  Later in my treatment I calmed that need and it was a relief to not be consumed with reading.  The information I read was helpful, but they always talked about the vast complications or side effects one could have. But not everyone has everything.  I think it caused me some anxiety, but I had to do it!

I probably got off topic so I'll stop.

Enjoy Suday,

Sadie

Aww..thanks Sadie.  I am close to being finished...one more to go on October 17th.  That'll be it for chemo, then, on to rads.  Overall I'm doing pretty well.  Carboplatin is easier than AC and Taxotere.

Hi, My biopsy revealed a 2.2cm.  in Aug 07.  I had a

lumpectomy 2 weeks later.  clear margins and neg nodes.  However if

I had not asked the nurse for a copy of my path report a week later at

my post op appt., I never would have known that I was triple neg, grade 3.

The report stated that the triple neg finding was from the biopsy. I was 

never told any of this. I was not referred to an ocologist prior to surgery

or given any options other that a lumpectomy or  mastectomy. I am now

having some serious doubts about whether I should have considered

neoadjuvant therapy. I had my first AC which I will get every 2 weeks for

eight weeks, followed by weekly Taxol for 16 weeks , followed by radiotherapy. None of my health care providers explained my sub-type to

me. I had to bring it up myself. I have downloaded a veritable library of

information concerning triple neg. Has anyone been given Abraxene instead

of the Taxol?  If so let me know what you know about it. Thanks for listening. 

Hi Carthie,

I think you only can receive Abraxene if you have mets. It's for liver, lung or bone mets.

I did not get told about the path report until I asked.  Then I had to do the research about it.  All they would say is it was a young lady bc and more aggressive.

Living in hope

Fla

Indigo,

I've been reading some of your posts.  You're pissed.  Like you, I get really angry...wanting to get OFF of the cancer train.  I'm sick of the attention, sick of the nebulous responses to my questions from my onc, who I do like, and sick of the negative press in the media relating to triple negative breast cancer.  I'm tired of people telling me that their grandmother and great aunt had survived breast cancer for 30+ years, etc., you know the stories. 

For what it's worth, the Triple Negative Breast Cancer Foundation is sponsoring a focused session on tnbc at the 2007 breast cancer symposium in San Antonio this December.  You can get more info on it at www.tnbcfoundation.org. 

The ladies comprising the foundation's board were featured on Fox Network's Mike and Juliet Show on October 2nd.  Together they did a really nice job focusing attention on tnbc and the need to find specialized treatment for our disease.  I believe the link to the show's segment on tnbc is still on their website at www.mandjshow.com .   The link can also be found at the tnbc foundation's website. 

Indi - I know you're pissed.  Thank you for your honesty.  It's how I feel some of the time also. 

Negative3Grade3 -

Good luck!  I was diagnosed in late July of this year.  I did my first round of Taxol this past Wednesday.  I finished 4 DD A/C 2 weeks ago.  I haven't had surgery yet.  That bridge I get to cross in January.  

Skippy in Austin 

Indi,

I hear you sooo well and the truth hurts.  I been through 3 cancers center. One MDA #1 and one other top 10 research center.  I had very aggressive bc from the on set.  Dx stage IIIc a 7 mm tumor.  I had surgery first and than DD ACT my bc tripled in size while on chemo than did rads and it cancer spread to skin.  Why did they not do bilat. mast?  I asked for one.  Now I find out I should not have had rads because the chemo can not treat my locally aggressive chest wall through damaged blood cells.  We knew this info before rads.

I think they did not take my other breast because they thought I would not live long enough to make a difference.  I had 27 nodes positive first mast. and they told my family I had 3 to 6 months  because it was so aggressive. Well I'm 2 years out and have been in treatment the whole time. (7 diff chemo's a total of 24 hits and 3 surgeries & Rads & 51 Nodes positive) 

Now I have been told that I have beat the odds so far because I only have a few small nodes behind chest wall positive and I have ran through all the "protocols".  All three centers have told me that they have ran out of options.  Or I could do very experimental Phase I only drug trials.  I have decided to take a break from treatment and wait and see if they come up with something new.  I love how everyone is quick to tell you about trials but I don't hear of anyone doing one.  I did one and what a bad experience.

My other complaint is when are they going to tell us bc warriors how to take better care of are selves in treatment and after.  I think I learn more on this site or reading than I ever did from the doc.  I feel great and have worked through out my tx.  This because I have educated myself on eating and supplements not from any doc's care. 

Help! I have cancer and they are guessing on what to do next.

Living in hope

Fla