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To chemo or not chemo....

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Let's Talk About Chemotherapy
Forum Description: A place to discuss Chemotherapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13435
Printed Date: Oct 16 2019 at 3:58am
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com


Topic: To chemo or not chemo....
Posted By: TerriD
Subject: To chemo or not chemo....
Date Posted: Nov 09 2018 at 7:03pm
I am struggling with the decision whether to have chemo or not. Stage 1, 1cm, lumpectomy, not in lymphnodes and negative pathology report. I have met with both radiology and medical oncology and they feel I should have both but not sure. Had a friend that had radiation only after lumpectomy and she's 10 years clean and free. Having TNBC, I'm not sure what to do.



Replies:
Posted By: Meadow
Date Posted: Nov 10 2018 at 12:36am
I don't know what kind of breast cancer your friend had, but TNBC is different from other types of breast cancer. You really have to think of the different types as totally different diseases. TNBC is more aggressive than most other types, and I've heard it can spread through blood vessels as well as lymph nodes. Also, for others types of breast cancer there are targeted treatments like Herceptin and Tamoxifen. There is no targeted treatment for TNBC. Chemo regimens are based on years of study and resulting survival statistics and type of cancer is taken into account. Ask your doc to show you survival statistics for those with your profile w ho do and don't do the chemo regimen that is recommended for you. For my profile (TNBC, age 44, Stage I, no lymph node involvement, negative pathology report, in good health otherwise), the chance of metastasis without chemo was something like 22% and with chemo it was something like 12%. I wanted that extra 10% chance of a cure. I'm 9 years out now. I'll never know if chemo made the difference, but I have no regrets.

I can't speak to radiation. I had mastectomy (due to having a BRCA mutation), and there were clean margins between the tumor and my chest wall, so radiation would not have increased my chances of survival. So it was not recommended.

Take care and keep posting if you have questions or need support.


Posted By: rstar
Date Posted: Nov 10 2018 at 4:21am
Hi Terri,

There are chemo regimens like CMF and TC that do not include Adriamycin and its (small) potential heart damage. Keep in mind that these regimens are considered lighter than the standard AC-T and most likely are less effective, but better than having no chemo at all if that's the route u decide to take. I personally would go with the standard regimen because Triple Negative is not a disease to mess with.


Posted By: gordon15
Date Posted: Nov 10 2018 at 7:25pm
Get a second opinion before you do anything. It takes 7 years for breast cancer to show up, not to minimize that it is TNBC. You have a month to decide, based on a second or even third opinion.

-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: TerriD
Date Posted: Dec 01 2018 at 3:30pm
Iwent for a second opinion and it was confirmed that I definately need to do chemo.  Now I have a week to decide on whether I want "dd-ACT" for 4 months (8 doses) or TC for 3 months (4 doses).  The doctor recommends dd ACT saying there is a 2% advantange over the TC statistically.  I would like to only have to do half the amount of doses however with the TC.  Anyone have any feedback, it would be appreciated.  


Posted By: 123Donna
Date Posted: Dec 02 2018 at 11:38pm
Hi Terri,

I don't have the answer to help you out.  What do you want to do?  Do you want the extra 2% advantage or go with the shorter dose cycle?  I can tell you my story.  My tumor was 1.5 cm, stage 1 and after my bilateral mastectomy I had TC chemo.  What we didn't know at the time was that some cells had escaped the tumor prior to surgery and ended up in some regional nodes.  They were too few to be detected at the time by the MRI.  About 13 months after finishing chemo, a PET scan showed the recurrence to the internal mammary nodes.  I've always wondered if I had the AC/T chemo, if it would have wiped out the cancer in the regional nodes.  I do have some regrets, but at the time, all the nodes appeared to be clear, including the sentinel nodes. 

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



Posted By: Meadow
Date Posted: Dec 03 2018 at 6:35pm
TerriD, I was given exactly the options you were given. I was Stage I with a 1 cm tumor and clear lymph nodes. I chose to go with dd-ACT because I wanted that extra 2% chance of a cure.


Posted By: ron
Date Posted: Jan 21 2019 at 1:36pm
My wife has tn grade 3, 4 mm size.  Had lumpectomy and will do radiation.  Some oncologists say to do chemo, others as under .5 say don't (including Sloan).  An original MRI/Mammo stated tumor may be .6 but Sloan states go by tumor size at biopsy.  Anyone's Doctors mention similar about forgoing chemo.  My wife wants best survival rate but not crazy about chemo risks unless measurable difference.  Some told her 5% but Sloan basically said under 1%better odds with chemo but study cited did not have a huge # of participants and a bit older.  Thoughts?  


Posted By: rstar
Date Posted: Jan 21 2019 at 11:28pm
Hi Ron,

If your wife is boarder line as to whether she needs to receive chemo or not, discuss the option of maybe having a light chemo regimen such as CMF. It does not have the major side effects and still considered effective for women with node negative. Also, she'll get to keep her hair ;)




Posted By: ron
Date Posted: Jan 22 2019 at 8:22am
Thanks for the reply.  We actually had some Doctor's say that CMF does have a drug in it at a higher dose than TC.  Believe drug that may be at risk for a future Leukemia but not 100% sure.  I guess our concern is if there is a measurable difference in preventing a reoccurrence she would have chemo but if not, then why do so.  Unfortunately, seems that still a "grey" area with TNBC and tumor size as to whether or not chemo necessary.


Posted By: lavi
Date Posted: Jan 28 2019 at 3:54pm
Hi Donna,
First i want to thank you for your always logical and helpful posts.
I've always  wonder. You had BMX  no radiation. You say that sometimes you wonder if you had ACT the reccurence could have been avoided. What about radiation?
My name is Lavinia,. Was dx Feb, 2017 TN 1.2 cm no nodes or invasion. I had LX right away followed by chemo FEC-D (equivalent of ACT- I'm in Canada). Right after chemo was done I insisted for BMX (just could cope mentally for leaving my breasts in place). The path report after BMX was clean, nothing was found. I insisted hard fro radiation but the doctors didn't want to give it to me.
Physically I'm doing well, I changed my lifestyle completely, but recurrence is on my mind every single day, every single minute. I'm 57 yo.




Posted By: 123Donna
Date Posted: Jan 28 2019 at 6:45pm
lavi,

Another good question and one I thought about when I had my recurrence.  Radiation after a lumpectomy or mastectomy would usually not include the regional lymph nodes.  Usually radiation is to the breast area, incision area and axilla.  We thought I was stage 1, 1.5 cm tumor, clear margins, all sentinel nodes clear.  My recurrence was to the internal mammary nodes and that is not an area they normally radiate without evidence of cancer spread to those nodes.  So even if they gave me radiation after bi-mx, it would not have hit those nodes.

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



Posted By: HopefulToday
Date Posted: Apr 27 2019 at 11:34pm
I didn't do chemo after the first lumpectomy and the cancer was back within 3 months. I did the chemo with Dr Ben Chue in Seattle and had a double mastectomy after. So far so good. 1 /1/2 years out. Learned the hard way... but look into your options in chemo. The type of chemo is really important. Read these boards and do your homework. There are no shortcuts to the homework unfortunately. You really need to be informed and you don't want to be looking back and saying, "wish I had known." 


Posted By: Lawsonval
Date Posted: Aug 28 2019 at 10:07am
I decided to go with chemo, I was in the ďconsider rangeĒ, 7 mm, T1bN0; ended up with TC, due to minor heart issues, I felt that if it worked I would never know, but that if the cancer recurred, I would have done what I could to prevent it. First treatment completed, more to come


Posted By: sdlw211
Date Posted: Sep 22 2019 at 9:22pm
Hello,
Iím new to this site as Iíve recently been diagnosed with TNBC from a biopsy and confirmed on a contrast MRI.Met with my medical team a few days ago. Have a 7mm tumor. Grade 3 tumor. Iím 70 and in relatively good health. Family history of numerous types of cancer and currently waiting on genetic testing to see Iíd I have the BRAC gene mutation.  At the team meeting, Med.Oncologist did not recommenced chemo. Team recommended a lumpectomy or mastectomy with 16 daily treatments of radiation. At first I was relieved not to have chemo, but with research and reading Iím learning that I should have Chemotherapy to get the cancer cells that may be floating around my body. My surgery is scheduled for October 9th.  Now Iím not sure what to do. Iím staying positive now but not sure I could be so if this cancer reoccurred. How do you tell a MO you need chemo if they donít recommend it? Is it time for a second opinion?



Posted By: HopefulToday
Date Posted: Sep 23 2019 at 12:38am
Maybe a second opinion would help you decide. I have never had radiation, only chemo. From what I understand it is difficult to go back and have chemo after radiation should the cancer come back.  


Posted By: Lawsonval
Date Posted: Sep 23 2019 at 1:49am
my oncologist did recommend chemo. I am taking TAxotere and cytoxin. No adriamiacin for me due to some heart issues, I am 64.
I had surgery first, due to small tumor size.  Negative on brca
T1bN0, 7 mm, ki 67-75%, Grade 3


Posted By: HopefulToday
Date Posted: Sep 24 2019 at 9:20pm
I sent you a private message 


Posted By: strongtogether
Date Posted: Sep 25 2019 at 8:23am

Please, do the chemo 
This disease is not a trivial one. Hit it with everything you can, chemo and radiation therapy if its offered 


Posted By: sdlw211
Date Posted: Sep 25 2019 at 10:03am
Thank you all for your comments and suggestions.  I sent a message to my oncology nurse who is following my case.  We talked at length.  She told me to share my concerns with my oncologist. I have an appointment post op with both my surgeon and my oncologist. Guess they are waiting on my genetic testing and final pathology report to decide on what kind of chemo I should have.  I'm more relieved now since the oncology nurse stated my doctor will listen and do what I ask. The nurse also stated that most BC patients don't want chemo. I explained that after reading and researching TNBC I wanted to do all I can in the beginning to prevent a reoccurence.  She said she would share my email with the oncologist.  I guess you have to advocate for what you want. I will still have radiation after the chemo.  I'm more at peace now knowing I will do I can to kick this BC.


Posted By: Plume
Date Posted: Sep 25 2019 at 4:21pm
I do believe that if you don't do everything possible, you may well be asking "what if" should, heaven forbid, things turn tricky at a later date.  It's best to ask about absolutely everything that goes through your mind and give your reasons for asking.
If you feel you should have a second opinion, then go for it.  It's your life and you are entitled to do all you can to preserve it.  Any doctor worth their salt would take time and patience to explain your options and take into account your preferences.  If they don't cooperate, then you are best off going elsewhere.
I do understand it's hard to fight your corner when you are ill and anxious but, when you are better and look back on this time, you will feel so proud of yourself.
All the best!



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