Go To Main TNBC Website


  New Posts New Posts RSS Feed - My Journey - Today is finally here!
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

My Journey - Today is finally here!

 Post Reply Post Reply
Author
Penny View Drop Down
Groupie
Groupie
Avatar

Joined: Dec 28 2016
Location: Sacramento
Status: Offline
Points: 99
Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Topic: My Journey - Today is finally here!
    Posted: Jul 14 2017 at 9:05pm
Today I "graduated" to follow up care (every 6 months).  I thought this day would never come and I am so grateful to be able to post to you all.  This forum allowed me to be my true self and reach out to you all for support during this journey.  My diagnosis was 12/7/16 and today I met with both my medical oncologist and my radiology oncologist for the 'good to go' sessions.  I have completed chemo, radiation, CT scans and my new baseline 3D digital mammogram.  I had a tough time with chemo and a not so tough time during radiation.  When I was in active chemo treatment, I thought I would never see this day. But I am here, posting away and happy.  Two weeks after my final radiation, I began swimming everyday to strengthen my arms and help with ROM.  I started taking biotin the day after I finished radiation and my hair looks FABULOUS!  It actually looks like a cool trendy short haircut that the celebrities sport (Thank you Katie Perry and Kristen Stewart for making this short boy cut look cool).  And the sun kissed my hair with it's rays of sunshine and my blonde hair shines like it never has. I am healthy and tan from the swimming and was able to take off the 5 lbs I gained during treatment in the pool.  

I could not have made it to this moment without this forum and for the senior members (you know who you are) who PM me when things were rough and I had a million questions and fears.  Thank You!!!  For those just diagnosed, hang in there.  The hard part is the first part (at least it was for me). The fear of the "plan" and all those decisions and information flying at you.  Get a good team around you and stay on this forum through your journey.  For me, it was a life saver.  I will continue to be active on this board in order to pay respect to those who helped me.  I am happy to help anyone but I am still a "newbie" in this.  Just know, you are not alone, your fears are real but the answers are out there.  Keep the faith and positive attitude.  Those are just as important as your "treatments" in my mind.   

Love to you all ~  Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2017 at 1:22pm
Congratulations Penny!  We have to celebrate every graduation!!  Thank you for sharing your story.  I felt the same way too about this forum.  It was an absolute life saver for me.  
Hugs!  I hope you are celebrating or doing something special today:)

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
SusaninVA View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 19 2015
Location: Virginia
Status: Offline
Points: 147
Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2017 at 3:55pm
Congratulations, Penny!  I feel the same way - it was (and still is) so reassuring to know you are not alone in this TNBC thing.  I am glad you are swimming - I go to yoga class and feel that my endurance has vastly improved.  And while you will never be the same person you were prior to TNBC, I personally feel there are "gifts" you take away with you post-treatment.  I wish you peace and hope you will have many "boring" appointments from now on!  (My last appt. with my Nurse Practitioner, her assistant mentioned they like to see us all have "boring appointments" !)
Back to Top
Canapoli View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 14 2017
Location: Massachusetts
Status: Offline
Points: 16
Post Options Post Options   Thanks (0) Thanks(0)   Quote Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2017 at 10:55pm
So glad that you are beginning a new journey. I would love your advice on a chemo/med oncologist issue. I am on my last round of AC and asked my doctor about scans before starting taxol and she responded that she wasn't going to get any. I am concerned because she always asks me if I think the tumor has gotten smaller, but hasn't examined me nor wants any scans. I am frustrated and feel like I want a scan or ultrasound to make sure the chemo is working. Also have read on this forum that some people have had tumors shrink after AC and then got larger again with Taxol. So iff my tumor has shrunk why not stop here and do surgery? Big question for my doctor. Also never got a copy of path report. Is that normal as well? Please advice would greatly be taken into consideration.
Back to Top
Penny View Drop Down
Groupie
Groupie
Avatar

Joined: Dec 28 2016
Location: Sacramento
Status: Offline
Points: 99
Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2017 at 1:06am
Hi Canapoli 

I didn't get a CT scan until all my chemo was completed (1 month post all chemo treatment).  Many on this forum also asked for a scan and were declined.  I actually didn't want a scan and it caused some anxiety getting it and fearing more would be found elsewhere.  All my chemo was given at the same time (I didn't have AC then get Taxol, it was all together).  You should specifically ask for your path report (I did and it was handed to me in the medical oncologist office immediately).  That helped because it has so much information on it.  So, ask for that for sure.  My protocol went : 1) biopsy 2) surgery 3) chemo 4) radiation.  Everyone's plan is different depending on so many variables.  So, I would say ask questions and be your own voice and advocate.  It is your medical record and your report.  I hope this has helped in some way.

Penny :) 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12580
Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2017 at 1:24am
Canapoli,

You have a right to all your medical records.  Ask for you path report.  You can ask for a copy of the medical records for every procedure, surgery, treatment, etc.  They must provide it.  It's a good idea to have a file folder with all your medical records.  I kept a portable plastic file tote with folders containing all my medical information.  I created a word document summarizing all my diagnosis and medical history to give to all my doctors.  It was helpful instead of trying to remember all the dates and events. I would bring it when meeting with a new doctor so they would have a detailed history.  I found it saved time and really helped with my medical care.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
Canapoli View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 14 2017
Location: Massachusetts
Status: Offline
Points: 16
Post Options Post Options   Thanks (0) Thanks(0)   Quote Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2017 at 12:08pm
123donna and penny
Thanks for the advice I will definitely be asking for the pathology report on Wednesday with my next treatment.
Back to Top
AllisonH View Drop Down
Newbie
Newbie
Avatar

Joined: May 20 2017
Location: Henrico, VA
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2017 at 4:58pm
Penny,
Congratulations! You give me hope that I will see the end of this "someday." I'm in chemo which is my first step, so many more steps to go. One of my coworkers mentioned going to an expensive steak place we both like when I'm done, so I'm really looking forward to that. Good luck with your "boring appointments" from now on.
Allison
Back to Top
AllisonH View Drop Down
Newbie
Newbie
Avatar

Joined: May 20 2017
Location: Henrico, VA
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonH Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2017 at 5:09pm
Canapoli,
My tumor has definitely shrunk from the AC, to the point that my doctor can't find it without my finding it first for her. I just started my Taxol/C chemo yesterday. Scans didn't even come up, and I didn't expect them to come up until after I'm done with all chemo in October. I'm having chemo before surgery, so I expect a scan after chemo to determine surgical needs.

I don't like that your doctor isn't examining you. Ask her why she isn't checking it. If your doctor isn't answering your questions or giving what you need to help you through this, is it too late to switch doctors? I just got the doctors I got, but, so far, they've been great. I didn't have a problem going back to my surgeon (first doctor I saw) to get clarification on a number of issues even after I'd seen the oncologist.

As already mentioned, ask for all of your reports. I, too, have a folder and a binder of everything I'm getting. I created a word document for notes and an excel sheet for all of the billing.

Good luck! Let us know how it's going.
Allison
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.