Go To Main TNBC Website


  New Posts New Posts RSS Feed - Newly diagnosed
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Newly diagnosed

 Post Reply Post Reply
Author
Gigi123 View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2018
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigi123 Quote  Post ReplyReply Direct Link To This Post Topic: Newly diagnosed
    Posted: Feb 27 2018 at 7:12pm
Just got diagnosed feb 19. Going for double mastectomy March 8. Scared to death. Fast growing. Grade 3 haven’t seen chemo dr yet but that is coming. How many months do you usually go through chemo. Has most everyone done IV or pill. Thank you for any input.
Back to Top
Lisa s View Drop Down
Groupie
Groupie
Avatar

Joined: Dec 05 2017
Status: Offline
Points: 43
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2018 at 7:59pm
My chemo was a little over 5 months prior to surgery. Lumpectomy\radiation following chemo. Was diagnosed last April.
Back to Top
Gigi123 View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2018
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigi123 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2018 at 8:55pm
Did you go weekly or is it daily. I’m still in shock about the whole diagnosis.
Back to Top
Asovey View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 18 2017
Location: Michigan
Status: Offline
Points: 150
Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2018 at 9:59am
Hi Gina:  You have found the perfect place for support and information.

I was diagnosed last November and I began chemo in the beginning of January.  I just finished the A/C round of chemo two weeks ago.  I was doing dose dense treatment so I had an infusion every other week.  This week I will start Taxol and Carboplatin which will be every week for twelve weeks.  Surgery will be next and most likely then radiation.

I remember feeling just the same as you when I was first diagnosed.  You will feel better with time, but now it is total shock and awe.  I could go from laughing to crying in the blink of an eye.  All very normal.

Are you getting treatment at a cancer center that has a dedicated breast cancer department?  If not, I would suggest you get a second opinion from a doctor/center that has a dedicated breast cancer department.  With the triple negative this is even more important.

We have a fantastic, new, state of the art cancer center here in Lansing, Michigan, where I live.  But, none of the docs specialize in treatment of breast cancer.  I got a second opinion from Dr. Tiffany Traina at Slone Kettering Cancer Center in NYC.  She specializes in triple negative breast cancer.  She is beyond amazing!  I took my treatment plan that was developed here and she agreed with it.  BUT she made some very important additions and modifications.  My docs here now follow her plan and I feel much more comfortable.

Hang in there!  Things will get better!  Fell free to text me at 517-231-2515 if you want to chat.

Ann
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4946
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2018 at 3:24pm
Hi there and welcome.
   You must be feeling pretty bombarded right now with all that is happening. While it is important to get up and going with a plan, this can be a very good time to reach out to get another opinion, like Ann suggested.
   There is an argument that having chemo first before surgery will give you and your medical team a better chance at evaluating how well the chemo is performing on reducing your tumor. Your doctors would be able to gauge when and how the tumor begins to soften and then shrink, or if it's not changing to re evaluate and perhaps choose another chemo cocktail.
   One of the things that is nice about getting a 2nd opinion is that you can learn more about what options are available, perhaps a clinical trial or perhaps a different schedule.
   Where abouts are you?
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
Beth TNBC View Drop Down
Newbie
Newbie


Joined: Jan 23 2018
Location: Ohio
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2018 at 8:16pm
Hello and Welcome,
I was DX Sept. last year and started Chemo in Nov. I finished 12 weeks of Taxol, Carboplatin and atezolizumab (clinical trial) on Feb.8. It was IV but I did not have a port, just accessed by vein each infusion. I have my pre surgery exam tomorrow with surgery scheduled March 13. I had a relatively easy time with the Chemo and didn't have any fears about it. I am terrified of surgery though. My tumor was large and biopsy showed lymph node involvement also. Tumor has shrunk from Chemo but is still 5cm. I am praying surgeon will say I can have a lumpectomy but at last visit he was leaning toward mastectomy. After surgery I will have more Chemo (4 weeks of dose dense treatment) followed by a month of radiation. I am being treated at the OSU James Cancer Hospital/Stephanie Speilman Breast Cancer Clinic and I can not say enough good things about them. It is a wonderful facility.
Does anyone have any encouraging words about surgery?

Edited by Beth TNBC - Feb 28 2018 at 8:26pm
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12836
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2018 at 10:47pm
Hi Gigi,

You must be feeling totally overwhelmed.  The first days, weeks following the diagnosis are some of the worst.  Once you get more information you'll be able to put together your treatment plan.  Most chemo is done through an IV and most get a port to make it easier on their veins.  Did they tell you the size of your tumor?


Here's a link to the NCCN Guidelines for breast cancer:

https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html



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
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12836
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2018 at 10:58pm
Beth TNBC,

There are lots of old threads on advice after mastectomy surgery.  Here are mine:

1.  Put a recliner in your bedroom and plan on sleeping in it the first week or two.  I placed a pillow on each side of me.  You want to avoid lifting yourself out of a chair or bed.  When getting up out of a chair, cross your arms over your chest and rock yourself up and out.
2.  Get big button down shirts to wear.  I wore my husband's.
3.  Don't lift anything heavier than a milk jug.  My family would put out plates and cups on the counter so I didn't have to reach for anything.
4.  My plastic surgeon said to think of your arms like a t-rex, where your arm is close to your side by the elbow.  Only use your forearms to grab, lift.  
5.  Take your pain meds!  They usually give you a step down method but initially you want to stay on top of them.  Valium, muscle relaxer, is your friend.  The different meds have different dosing so it's a good idea to keep a medicine log of when you took it and when the next dose is due.  Some meds might be every 4, 6 or 8 hours so it's easy to get them confused.
6.  Take collace or another stool softener.  The pain meds cause constipation.
7.  The drain tubes are just a big pain, period!  I used a lanyard to safety pin the tubes when showering.  I think there might be other options today to hold the drains.  You may want to ask your surgeon.
8.  You'll want to measure the fluid from the drain tubes.  We used a notebook and recorded the cc's drained from each tube a day.  This will let the nurse/doctor know when a tube can be removed.
9.  The first week is the hardest.  It's good if you can have someone help you.  Rest and let others wait on you.  Ask for help.

Good luck and keep us posted.
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
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 929
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2018 at 9:38am
Welcome Gigi, so sorry about your diagnosis but glad you found us here. Through folks I met here, I got a second opinion appointment I could not have gotten in my own - it changed my treatment and I think might have saved my life :) Everyone has already given you excellent advice. If they haven't already, they will be scheduling you for a bunch of tests really quickly - like CAT scans, MRI, PET scan, bone scan, heart scan. It's scary but it's standard operating procedure when you're diagnosed with any cancer. Those tests will show up "suspicious things" requiring further tests. You have lived in that body, and every body is different! Like: lump in ovary: ultrasound showed a normal fluid filled cyst. Spot on lung: xray showed a scar from a previous pneumonia, Shadow on back rib: xray showed a healed crack probably from a car wreck 18 years earlier! The vast majority of the time the "things" they find doing whole body scans turn out to be nothing, so don't freak out! Come here and ask any question you have, and someone here probably has experienced it!
Beth: know that scans are not accurate at measuring the size of your remaining tumor after chemo. Mine showed U still had almost a cm left of a 2 cm tumor - pathology from my mastectomy showed it was ALL tumor bed and scar tissue - all dead, NO live cancer! so who knows what that is they see left? There's always hope!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
Beth TNBC View Drop Down
Newbie
Newbie


Joined: Jan 23 2018
Location: Ohio
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2018 at 6:50pm
Donna and Kelly,
Thanks so much for your kind words and advise.

Beth
Back to Top
Gigi123 View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2018
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigi123 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 7:48am
Hi
I’m sorry for the late response. I have been so busy with appointments and have tried staying off the internet. I have found myself obsessed with searching for anything related and it’s a bit much. I sincerely appreciate your great tips. I have the perfect chair. I will post again when I’m feeling ok after surgery next week. My husband and sister will be here to help me.
Back to Top
Gigi123 View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 27 2018
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigi123 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2018 at 7:50am
These links have been great. I got more info from these then online searching. Thank you so much. Everyone has been so nice.
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.