Diagnosed in November |
Post Reply 
|
Page <1234> |
| Author | |
kykim 
Newbie 
Joined: Dec 31 2013 Status: Offline Points: 27 |
 Post Options
 Thanks(0)
 Quote Reply
 Posted: Jan 06 2014 at 10:37pm |
|
Lillie & Donna,
Thank you for your response. I hope I gave all the information correctly from my appointment and didn't misrepresent the doctor. These appointments are stressful & sometimes I am absorbing something the doctor has said & he's moved on... maybe I missed some of the conversation? But I honestly felt like one of us didn't understand TNBC, me or the doctor! I really want what he said to be the end result but all that I have read (much of the info was found on this site) does not match what I was hearing. I have read where other patients have said their doctor showed them numbers as they explained why the patient should or should not have treatment. Donna, I read the staging/tumor biology last night so I had a hard time understanding why he was telling me stage 1 TNBC is the same as other stage 1 breast cancer? If I saw the numbers to support his statement I might be ok but I didn't? So....this is where I am right now. Praying for God's guidance and resting in Him. Thank you again for your help & encouragement. God Bless, KIM |
|
 |
|
|
123Donna
Senior Member 
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 06 2014 at 10:46pm |
|
Kim,
Can you bring a recorder to your meeting and tape the conversation? Many smart phones have voice recorders on them. Or maybe bring someone with you who can take notes? It's so hard to digest all this information. I remember when I was first diagnosed and later saying my onc never told me. My husband would say, yes she did. I think we develop tunnel vision with our hearing, lol! But honestly it can be so overwhelming and recording the talks will help you play it back at a later time and make sure you understand everything the doctor is telling you. Getting this diagnosis and trying to understand it and your treatment options is pretty overwhelming. Be gentle on yourself. 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 |
|
|
|
|
overwhelmed
Senior Member
Joined: Apr 06 2010 Location: Greenville, SC Status: Offline Points: 490 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 06 2014 at 11:08pm |
|
Kim,
I am so sorry you are going through this. I would really encourage you to get a second opinion. Chemo, and often radiation,are pretty much the standard of care with TNBC, even stage 1. Stage 1 TNBC isn't treated like stage 1 BC. I think you will find very few on this site, even those who were stage 1, that didn't get chemo. TNBC is aggressive, and is treated aggressively much of the time. One more thing, I am pretty sure oncotype testing is done when the tumor is estrogen+. Otherwise it doesn't work.
I hope you get the answers you need and answers you can feel confident with.
Lori
|
|
|
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
|
|
|
|
|
overwhelmed
Senior Member
Joined: Apr 06 2010 Location: Greenville, SC Status: Offline Points: 490 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 06 2014 at 11:12pm |
|
Kim, One more thing. Do you have a copy of your pathology report? I know some of the information included is confusing, but every time I read mine I found some things I hadn't absorbed when I read it before.
Lori
|
|
|
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
|
|
|
|
|
kykim
Newbie
Joined: Dec 31 2013 Status: Offline Points: 27 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 4:19pm |
|
I found out a few things.... Dr Forero, who I wanted to see, will not take patients who are out side the facility.So an appointment with him is not an option. In Montgomery there is a cancer center and it was suggested that I see Dr. Barnes? I guess that is who I will go to for the 2nd opinion.
Donna, I think I am going to try and use my phone or mp3 player to record my next appointment, that is a good suggestion. Lori, I do have my pathology report and I have poured over it but I don't know how it relates to having TNBC. As I said before my tumor size was 0.6cm, Grade 2 (it was a 7 score), Ki-67 was 71%. Maybe when they did my blood work the tumor markers were normal and I really do not need chemotherapy? Thanks for the support and help! KIM |
|
|
|
|
overwhelmed
Senior Member
Joined: Apr 06 2010 Location: Greenville, SC Status: Offline Points: 490 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 4:54pm |
|
Kim,
I think in one of your earlier posts you talked about a vascular invasion. Does you pathology report say whether or not one was present? At one point I had to go back and look to see if I had one, and, to my relief, I didn't. I did have a microscopic cell in my SN, although the LN was still considered negative, which was good.
Your tumor was small, and that could be why your onc is considering not doing radiation. But, over the course of time I have been on this site, there have been stage 1 women with small tumors and no LN involvment who have had a recurrence. I'm not a doctor, but with TNBC, I would do chemo. It's our best defense against a recurrence (along with surgery). It's a tricky more aggressive breast cancer. No breast cancer is "run of the mill", but TNBC defintely isn't. We have a higher chance of recurrence. But, it usually responds well to chemo, and most do survive.
I don't want to scare you. TNBC can definetly be cured, and with most, it is. I just want you to have all the information available to make the best decision about your treatment.
I want to add that I am sorry you are unable to see the doctor you would like to see. I am not a big help when it comes to the oncologists.
I know this is such a difficult time. The waiting and trying to figure out what to do is difficult.
Lori
|
|
|
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
|
|
|
|
|
Dana
Newbie
Joined: Jan 05 2014 Location: California Status: Offline Points: 3 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 5:16pm |
|
Kim,
As someone who also was told 'you are healthy and this was small with no node involvement", I thought I would be OK and elected to do "alternative" treatment rather than aggressive chemo and radiation. It did reoccur, twice, and now I am stage four with a recent brain tumor metastasis and I am being told that there is no "cure" at this stage; only hope that they can increase the time I have left and my quality of life. I have also been told that even if I had done "traditional" treatment, because this cancer is so aggressive, I could be in the same boat any way but I would say get aggressive early while you can. I am sending prayers your way! Dana
|
|
|
|
|
kykim
Newbie
Joined: Dec 31 2013 Status: Offline Points: 27 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 5:26pm |
|
Hi Lori,
He did say I would need radiation but no chemotherapy. My pathology report said; Lymphatic/Vascular Invasion: Present, focal So I assume there had to be something to make it on my report? My margins were clear so maybe he thinks if there was invasion it was taken out when I had the lumpectomy? Does everyone that has/had invasive ductal carcinoma start out with DCIS? I had DCIS and it was 1.2 cm and I assume it was TN as well? Just want to be informed so I can make the best decision. Just so frustrated! Maybe I just don't know the right questions to ask? I do think he thinks because the cancer was small it was caught in time? Thanks, KIM |
|
|
|
|
kykim
Newbie
Joined: Dec 31 2013 Status: Offline Points: 27 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 5:33pm |
|
oh Dana,
I am so sorry! I will keep you in my prayers... Thank you for sharing with me. God Bless, KIM |
|
|
|
|
Cathieroh
Newbie
Joined: Dec 02 2013 Location: ohio Status: Offline Points: 28 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 6:41pm |
|
Hi Kim, Regarding your question about DCIS--I was diagnosed with DCIS in '07. At that time I had a lumpectomy followed by radiation then five years on Femara. The DCIS was not triple neg. It was removed with wide clear margins at time of lumpectomy. August of this year my TNBC was diagnosed (same breast). It was a small mass (6mm) and was all removed at time of biopsy. I had a mastectomy and just finished four rounds of chemo. I feel that going after this particular type of cancer aggressively offers the best chances of avoiding a recurrence. I wish you well. Please keep in touch.
Edited by Cathieroh - Jan 07 2014 at 6:42pm |
|
|
11/07 DCIS lft breast; lumpectomy & rads then 5 yrs Femara.8/13 dx TNBC age 62 StageI gradeII 6mm single focus no nodes. BRCA neg lft mast with DIEP flap recon. 4 rounds Taxotere/Cytoxan
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 07 2014 at 8:16pm |
|
Kim,
When you go to your second opinion appointment bring a copy of your pathology report. Ask the oncologist about the "Lymphatic/Vascular Invasion: Present and Focal". In my untrained opinion this would mean some cells may have escaped the tumor and is a good reason for chemotherapy. Please ask for clarification to make sure you understand all aspects of the path report. What is “vascular” or “lymphovascular” or “angiolymphatic” invasion? What if my report mentions D2-40 (podoplanin) or CD34? Tumors cells can break into small vessels seen under the microscope and this is called “vascular” or “lymphovascular invasion”. The presence of tumor in vessels is associated with an increased risk that the tumor has spread outside the breast, although this does not always occur. D2-40 and CD34 are special tests that the pathologist may use to help identify “vascular” or “lymphovascular” or “angiolymphatic” invasion. These tests are not necessary in every case. If your report does not mention this type of invasion, it means it is not present. Even if it is present, your cancer could still be very curable, depending on other factors. How the presence of this finding will affect your specific treatment is best discussed with your treating doctor.
|
|
|
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 |
|
|
|
|
kykim
Newbie
Joined: Dec 31 2013 Status: Offline Points: 27 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 14 2014 at 9:24pm |
|
It has been a few days since I have posted but wanted to let you know I go see the Radiologist tomorrow (Wed Jan 15) and Thursday (Jan 16) I go for my 2nd opinion. I could not get an appointment to UAB. They said they were not taking outside patients who were not referred from someone at UAB. I will be going to Montgomery Cancer Center.
I will post in a few days to let you know how the appointments went. Donna, I will ask about the Lymphatic/Vascular Invasion & try to remember my mp3 recorder! God Bless, KIM |
|
|
|
|
Georgia1965
Newbie
Joined: Aug 05 2013 Location: Australia Status: Offline Points: 12 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 15 2014 at 5:33am |
|
Hi,
just to add to the conversation regarding 'vascular invasion', when I was diagnosed with TNBC in May 2012, the surgeon and the oncologist highly recommended chemo (especially) and radiation for several reasons. 1. due to size of my tumour (2cm), 2. TNBC status, 3. vascular invasion was 'present but slight' and 4. grade 3. Both the surgeon and the oncologist talked about the vascular invasion, even though it was 'slight' but present, was a very strong reason (along with the others as above) to not only do chemo but the dose dense more intensive chemo as well as another type of chemo once the dose dense was finished, after that. I was given the impression that the vascular invasion was a significant factor because it was 'present', and one reason they suggested the dose dense chemo rather than the standard chemo. BTW I had no node involvement, they took out 5 nodes to test. I had a lumpectomy, clear margins, no nodes. My tumour was 2cm, borderline between small and large. The chemo has caused me the worst and most ongoing side effects of the whole TNBC ride but I knew that, for me to rest easy, I didn't want any regrets that I didn't go the most aggressive path I could possibly take to beat this. No matter what happens now, I tried my very best, it was very hard and still is but I did it, no regrets. Good luck Kim, do what you feel is right after considering all the options presented to you and then focus on getting better! Xx |
|
|
dx 25/05/12 @ 46yrs TNBC 2cm Tumour, Grade 3, Lumpectomy 0/5 nodes, DD AC & Other Chemo, Radiation
|
|
|
|
|
kykim
Newbie
Joined: Dec 31 2013 Status: Offline Points: 27 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 18 2014 at 8:20pm |
|
Hello Ladies,
I met with radiation Dr on Wed and he is in agreement with needing radiation with a boost at the end. He asked if I have thought about BRCA testing? I told him the oncologist said I probably would not have it because of no breast cancer in my family but he would do it if I wanted him to. The radiation dr said he didn't think it would be positive either but for the simple fact I am under 50 & TN he thinks it wouldn't hurt to do the test and I would know for sure, especially if insurance paid. I went back to his office on Fri and did the BRCA testing and insurance is going to pay. The 2nd opinion with the oncologist in Montgomery went ok. I will try to give you the short version of the visit. The dr said he would recommend chemotherapy for me. Even though I am stage 1 with a small tumor (0.6 cm), he sees my grade as a 3 instead of 2 because of my Ki-67 (71%) is more consistent of a grade 3, even though my nodes were negative I was .1 mm away from being .2mm which would have changed things. Also I had some LVI. He said if I had been a few more months later going for my mammogram I would have been in a much worse situation. He told me he has recommended other patients of his with my size tumor to have chemotherapy who have TNBC. He said morality rate without chemo is 10% and with chemo 5%. Recurrence is 21% without chemo and 12% with chemo. He also asked about BRCA testing & was in agreement with the radiologist about having it done. He told me if the radiologist had not done the test he would have done it. He said he does recommend chemo but would not fault me for not doing it. He went on to say that if it was his wife he would advise her to do the chemo. The chemotherapy is preventative measure against possible stray cell breaking loose or in the lymph/blood stream. Radiation is isolated to where to tumor was found. He told me he would do 2 kinds every other week doing 4 treatments and follow up with 1 other every other week doing 4 treatments as well. My husband & I were wanting more of a "yes" you need chemo because of these reasons or "no" you don't need chemo because of these reasons. More or less one is recommending chemotherapy and the other one isn't. Basically they both agree that I am in a grey area  The cancer was found on my 1st mammogram and could not be felt on breast exam. I have not come to any decision about doing chemotherapy but I know a decision will need to be made soon. I will be spending time in prayer asking for guidance in making the decision. Donna, I brought my mp3 player & recorded my visit with oncologist in Montgomery. It was a lot of help to go back & listen. Thank you for the suggestion! God Bless, KIM |
|
|
|
|
Lillie
Senior Member
Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 18 2014 at 9:40pm |
|
Dear Kim,
Please get the chemotherapy. "Grey areas" and "some LVI" are words that scare me. It would be enough to help me make up my mind immediately. In the 7 years since I was diagnosed, I have seen enough recurrence of all kinds of cancer to make me know what to do. BUT, being TRIPLE NEGATIVE doesn't leave any room for "do-overs" with your initial treatments.
Chemotherapy is not the most pleasant things you will ever do in your life, but it is doeable and will probably Save Your Life.
Please be pro-active and you won't have reasons to be sorry in the future.
Love and God Bless,
Lillie
|
|
|
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
|
|
|
|
overwhelmed
Senior Member
Joined: Apr 06 2010 Location: Greenville, SC Status: Offline Points: 490 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 18 2014 at 10:44pm |
|
Dear Kim,
I agree with Lillie. Please do the chemo. What I didn't know in the beginning, but I know now, is that we set our course of treatment at a time when we have less understaning of what we are dealing with. TNBC is beatable, but it is a sneakier cancer. Over the nearly four years since I've been coming to this site, I've seen women whose stage 1 cancer has returned, often with a vengence.
Chemo is difficult, but there are drugs and things that can be done to ease some of the side effects. Before you know it, it will be behind you. I can say with almost certainty that there will be some anxiety in your future. For me that anxiety was worse once I ended treatment since I was no longer being proactive in getting rid of the cancer. When I was anxious, I took comfort in knowing I hit it with everything I could.
I wish you well as you decide what you want to do.
Sending good thoughts your way,
Lori
|
|
|
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
|
|
|
|
|
Katdoll
Senior Member
Joined: Mar 13 2012 Location: WA Status: Offline Points: 214 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 18 2014 at 11:54pm |
|
My aunt at Dana Farber had 6 mm tumor and no lymph node involvement or LVI and got the same advice as you - that chemo would reduce risk of recurrence. She opted for chemo. There's no way to know if any cancer cells escaped and are settled elsewhere in your body. This is your one chance to zap them. Metastasis down the road would not be curable. My doc says that when TNBC does metastasize, it is usually more aggressive than other breast cancer types, meaning comes back sooner and stronger.
|
|
|
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
|
|
|
|
|
LRM216
Senior Member
Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 20 2014 at 9:57pm |
|
KyKim:
Please, seriously consider going through the chemo. This is the only chance you will ever have at throwing all you can at this cancer. While there are never any guarantees for any of us, no matter how small our tumor may be, or how clean our nodes were, the fact that you have LVI would be the absolute deciding factor for me. I had no LVI, my nodes were clear, and my tumor, although larger than yours, was still considered on the small side, leaving me as a Stage 1. My oncologist, who has handled many other TNBC cases, strongly encouraged me to go as heavy as I could. I did, and while I didn't have the easiest of times through all the chemo, I continued to work and raise my grand-daughter. I have never had any regret whatsoever, as I can at least assure myself that I did all that I possibly could in the hope of never having to see this cancer again. I wish you nothing but the best, Linda
|
|
|
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
|
|
|
|
clarkjennifer
Newbie
Joined: Dec 26 2013 Location: Arizona Status: Offline Points: 18 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 21 2014 at 12:45am |
|
KyKim you have to work hard over your treatment as it is necessary to have perfect diet with the treatment. You have to take care of yourself with nutritious diet. I would advise you to avoid unhealthy and junk food. Always have the food which is healthy and nutritious. After chemotherapy treatment it is necessary to have protein diet. Your treatment is going in the right direction and make it successful with your efforts. You can try yogas to keep you healthy and out of reach to cancer.
|
|
|
|
|
kykim
Newbie
Joined: Dec 31 2013 Status: Offline Points: 27 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 25 2014 at 8:27pm |
|
Hello Ladies,
Sorry it has been a while since I have posted. First, I want to thank each of you who have replied, encouraged, & have tried to help me make sense of TNBC. I appreciate you all so much! I went back to Montgomery on Friday. I left having made no decision on treatment. It takes an hour and 30 minutes to get home so I had plenty of time to think. I have come to realize IF I have a recurrence I would like to know that I did ALL that could be done the first time. I have decided to do chemotherapy. I will call my surgeon on Monday to set things up and call the oncologist to let him know. I am going to continue with the Dr. in Montgomery (He is the one I went to for the 2nd opinion). Today I sat my 12 year old daughter down to tell her I would be doing chemo. Bless her heart, she cried....and I cried. All she understands is that I will loose my hair. ( I have thick long curly hair) I told her it would grow back and explained that I don't get a redo button if I don't go ahead with it now. I asked her if she wanted to go with me when I shop for a wig and she said she wants to go with me. I asked if she wanted to be with me when my sister-in-law cuts my hair off and she said yes. I told her it was ok if she didn't want to do any of those things but she said she wants to go with me and be there. I thought if she has a choice to be involved/not be involved it might help her. My 2 boys are 19 and 23, they did fine when I told them they just hate it for me. My husband is hanging in there with me and being the supportive rock he has always been! Once again THANK YOU for the encouragement and help! This site is a fountain of information and wisdom! I will post more later when I have details of the surgery to put a port in and start the treatment. Love & God Bless! KIM |
|
|
|
Topic Options|
Post Reply
|
Page <1234> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |