Where are the tri-negs!

I am a lurker, so it takes me a long time to read enough posts to get oriented. As a triple negative, I read most of the posts in this thread today.

Indigoblue, I can't imagine how discouraged you are over being denied more aggressive treatment when you wanted it. I also had the stabbing pain, and knew it was a myth that "if it hurts, it isn't cancer." Interesting how you were told to start counting your NED time. I didn't have chemo, so wouldn't know when to begin, according to your onc. I guess I'll use second surgery date, since all tests then are NED.  As a friend of mine would say, anywhooooo, congrats on the 2 years NED!!!

Squids - you are an inspiration!  I am just now getting enough energy back that I think I can help put together a directory of local resources for women with BC in our little rural community. When I asked for them when I needed them, I was told by the hospital and clinic they didn't have any information, and to please let them know if I heard of anything, and I thought, yeah, right. Hold your breath for about a year and I'll get back with you on that. We got a grant to help cover some of the expenses.

The discussion of followup schedule for us triple negs was interesting. I would think there would be a standard protocol depending on our particulars - node involvement, etc. I also wanted PET and other scans to make sure I didn't have any NED. My onc and surgeon both said they didn't order them unless there was a reason, and they didn't think there was a reason in my case.  I guess I was looking for certainty in what I'm learning is a world without it. So what I've been learning is how to live in that world rather than in the world I was in before, when I had the illusion of certainty. I've come to learn that all I had to give up was the illusion that I had any control -- I didn't really have any control to give up.

That said, there is still the matter of having responsibility for some things, which include trying to eat well, get enough sleep, exercise, and make good choices when I have the opportunity to make them.  For me, that included the opportunity to be able to change jobs, even though I had previously felt that I was being held hostage to a job in order to keep health insurance. That has to be one of the most stressful things we go through - having a job with health insurance, and worrying about how to keep the job if we can't work every day.

I don't always feel that I am making good decisions - a lot of the time I still feel foggy and fatigued. I was really tired a lot before I had my diagnosis (even though I was told that wasn't "normal" I don't necessarily believe that.) It is a 5-hour trip for me to see my doctors, and I'm on a 3-month followup schedule for the first 2 years.  My third (I think) followup appointment is July 14.  I manage to get appointments with my surgeon, oncologist, and doctor at the women's imaging center all on the same day.  I have exams and blood work, and in between the last 3-mo exams had a right-side (non-C side) mammo and ultrasound due to some rather lumpy concerns which turned out to be okay.  Will have 6-mo mammo on the c-side in July.

Now I'm wondering, if I see all these docs, maybe I should stagger them, so I'm seeing the onc and imaging on the 3- mo. and 6-mo schedule, and see the surgeon in between time. I guess the answer depends on whether I want an additional visit to stress over, or an additional visit to give me peace of mind. (Kinda like the basic question about the nature of the universe, isn't it?)

Also, I'm even wondering whether I need to call the onc and get in sooner. I've had increasing amount of pain on the left side - under the arm, under the breast, and in the nipple area, near where the surgery was. This is different from the pain that I had after surgery, during healing, and again when that side started "waking up" after radiation.  More like the pain I had in the cancerous "lump" - (what a benign name for something so malignant!)  It comes and goes, like the original tumor pain, so I don't know how to apply the rule about something that lasts for more than two weeks.

I made up my mind after the last 3-mo. checkup (which was also after a round of exams by gyn, the genetic testing, etc. which meant I was seeing someone at least once a month for 6 months immediately after rads was done) that I was going to live like I'd never had cancer -- not wake up and think about it every morning, and not allow it to control my life.  which I did pretty well with until this pain started getting worse. Most of the problem in that area so far have been attributed to surgery and rads. I hope this is more of that -- but it's really hard to sort out when we have to also be vigilant.  I think there are new little knots there, but hard to tell.

I am officially finished with treatment. Had my final rads last Friday. Will see my docs again in September for bloodwork and scans.

It is good to be finished, but it feels kinda like riding your bike w/o training wheels for the first time. I haven't quite got the hang of this and it feels strange...

Take care, Paula

FloridaLady. Are you doing Budwig diet?  Still doing alt. treatments along with chemo?

Just curious.

I'm praying for you. (seriously)

Congrats rn2. I have 6 more radiaions tx and can't wait to be done. time to get on with things.

hugs laurel

can someone send details on the Budwig diet????

Holly,

cancertutor.com has some good info. on Budwig diet. 

ladybug,  I will pray for your son, my daughter is in Qatar and will return home in nine weeks. I start my chemo on July 31st...do you know what type of chemo you are having? It appears that most on the site are having AC/T. I am having TC Taxotere/Cytoxan. I am hoping to get some feedback from other TN's who have had this treatment. My prayers are with you, we will get through this!

Jeris

Flalady, unfortunately, the link doesn't work. Thanks for the effort.

Paula, thanks for the wishes!

Paula,

I have read a lot of your post, we are blessed to have your insight. Shortly after I posted my comments here I found another TC forum on this site. I really would like to know how effective TC may be for triple negative cancers. I am ready to be as aggressive as possible with my treatment, so I just want to be as sure as I can of my decision. I did find a Cancer News Article that compared TC to AC as adjuvant therapy at professional.cancerconsultants.com/oncology.

Florida Lady...I have read a lot of your post as well, you are such an inspiration...stay strong!

Jeris

I didn't even know there was a tri-neg board until I searched for UTI's.  I started my TC treatments on July 15, getting ready for the 2nd 1 on Tuesday. 

I didn't get an arm port, so I can't help with that question.  I only have 4 treatments, so I think that may be why.  Not sure though.

 The UTI was the worst thing I experienced through the first treatment, I did have some lower abdomen pain which was tolerable & I was run down about 3 days out of the whole 2 weeks.  I feel really normal now - except for a little light bleeding.  Anyone else get that?