whether to choose chemotherapy
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Topic: whether to choose chemotherapy
Posted By: nilufer
Subject: whether to choose chemotherapy
Date Posted: Apr 23 2010 at 10:17pm
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Hello:
I was very happy to find this website and forum.
I was diagnosed with TNBC about two months ago. I had a lumpectomy, clear margins, negative nodes. Tumor was grade III and but was very small (5 mm) . I will have radiation, but issue of whether to have chemo has come up.
My oncologist says that chemotherapy would only reduce my risk of recurrence by 5%. He mentioned that I need to weigh the possible benefits of chemo with the risk of possible long term effects of chemo. Essentially, he is not making a recommendation, but leaving it up to me to make the decision to have chemo or not.
Has anyone else been in this situation and had to make this choice. It is really hard.
Thank you for any advice you can give.
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Replies:
Posted By: Allison
Date Posted: Apr 23 2010 at 11:13pm
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nilufer, Welcome to the site! You will find that there is so much support here. I know that you are probably still spinning from diagnosis and everything. It all kind of hits us like a ton of bricks (lead bricks at that!). As far as your treatment is concerned, I don't know what to tell you. I'm sure some of the other, more experienced members will have some input. At 43 I had a stage 2A tumor with no node involvement that came out of nowhere. I had a lumpectomy followed by 6 chemo sessions (3 FEC and 3 taxotere) followed by radiation. I was told that being triple negative with a KI-67 of 97% I would need the chemo and since I decided to have a lumpectomy I knew that I would have to have the radiation. I felt really confident about the information that I received from both my surgeon and oncologist. They were highly recommended and I just had a sense of peace about being directed to their group. The one thing that I would suggest is that you may want to educate your self as much as you can and pursue a second opinion if you need to. I asked my drs about second opinions and they were very supportive and openly encouraged it. I do feel that you need to be comfortable with your medical team. You will be working closely with them and you need to feel that they are there to support you, answer your questions and respond to your concerns. My thoughts and prayers will be with you - We all know how it can be - Hang in there! ------------- 9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08. |
Posted By: Kerry OK
Date Posted: Apr 24 2010 at 12:14am
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nilufer, I have the same situation as you. After visiting with 2 local oncologist and then going to MDA in Houston, my decision was made clear. I chose to do chemo and then the radiation. The local doctors were actually unsure for a treatment plan since it was TN. After visiting with a specialist at MDA, she basically said that if I were old unhealthy woman with heart disease that she would not suggest chemo. Otherwise if it were her, she would take the chemo. She never actually told me I had to take it, but she was so confident about TNBC and its dangers. Therefore, I came home and started my chemo. NO one can make this very difficult decision for you, but you just need to follow your heart. Whatever you decide will be best for you!
Hugs and Prayers,
Kerry ------------- DX 11/11/09, IDC, <.5cm, 0-2 Nodes, Stage I, Grade 3 TNBC, Lumpectomy 11/27/09, Age 53 Treatment begins 2/5/10, 12 wkly doses Taxol, 4 doses every 2 wks of A C Then 6 wks Rads |
Posted By: SagePatientAdvocates
Date Posted: Apr 24 2010 at 12:18am
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Dear nilufer, I would seek a second opinion and please make sure you see a Breast Medical Oncologist who is TNBC knowledgeable...TNBC is a different, very aggressive beast, than other breast cancers. It may very well be that the second oncologist will give you the same opinion as the first due to the small size BUT chemo may be recommended.. I have been told that one of the problems with TNBC is that, at times, there is something called micro-metastasis that may not show up on a SNB. please ask your oncologist to give you a study reference regarding the 5% figure...also please ask him to also show you studies that radiation solely is better than chemo/radiation for TNBC. some questions, please- how old are you? do you have a family history of breast/ovarian cancer on your mom's or dad's side? has anyone talked to you about genetic counseling/testing? all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: nilufer
Date Posted: Apr 24 2010 at 10:40am
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Thank you Allison, Kerry OK and Steve: It is so helpful to hear from all of you.
To answer Steve's questions: I am 51 years old, no family history of breast and ovarian cancer for parents or grandparents. No one has mentioned genetic testing/counseling. Should I do this?
Thank you so much for the support and advice.
Nilufer
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Posted By: Kimberly
Date Posted: Apr 24 2010 at 11:16am
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Being 38 years old and diagnosed with TNBC; my oncologist told me there was no way around the chemo. Glad I did it (almost done!!! - 3 Taxol left). I was given ACT - and so far, I have tolerated chemo pretty well. I also have peace of mind that I took an aggressive stance toward this disease. Best of luck with your decision.
------------- Found breast lump Age 38 10/09 Dx: Invasive Ductal Carcinoma BRCA 2+ 11/13: BLM; No Reconstruction Stage 2B; 3 cm tumor, Clean Margins, 1/9 lymph-node positive, Grade 3, triple negative tumor ACT |
Posted By: Sugar77
Date Posted: Apr 25 2010 at 2:40pm
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Hi nilufer - my tumour was very small and about the same size as your's. My onc gave me the option of doing chemo and I decided to go ahead and take it. I did four treatments of Taxotere & Cytoxan. It was a tough decision to do it; however, I didn't want to have any regrets for not taking some that was made available to me. My hair is already growing back and I tolerated the treatment fine. Since I had a lumpectomy, I needed radiation and just completed 16 full breast/5 boost treatments last Wednesday. I'm from Canada and my rads onc says our protocol is a bit different here, i.e., we get fewer, but higher dose, treatments. I should mention I was 45 at diagnosis. I also do not qualify for genetic testing as I have no known family history and do not fall into any of the other categories to quality. Sherri ------------- DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010. |
Posted By: Mary58
Date Posted: Apr 25 2010 at 4:46pm
| Hi Nilufer - I am in the same boat as you are. My tumor was .5 cm, no nodes and supposedly clear margins (they were less than .1 cm clear). A little debateable. Iam 58. I don't know if I fall into the too old, poor heart category - but, my onc along with several other did not recommend chemo. I certainly questioned it - a lot, hearing of all this triple negative recurrences, etc. He said I could have chemo but he clearly said he didn't recommend it. All of this is very hard to understand so you need to have all your questions answered and make the best decision you can. It isn't easy. I had 30 sessions of full breast radiation and will be waiting for my first check and trying to live the best life I can in between. I have incorporated daily exercise as well as a low fat diet. I wish you well and there are more of us out here. I know when I had to make the decision I too was wondering if there were any other small tumor women who were only doing radiation. Stay well. Mary |
Posted By: trip2
Date Posted: Apr 26 2010 at 11:25am
Hi Nilufer and welcome.
We are glad that you have found us too and will do our best to help you thru understanding and great support.
I have had TNBC twice. The first was around 1cm w/1 node and the second on the other side was smaller, no nodes.
Both times I did have chemotherapy. The second time I had already began my research and with all that I had learned my choice was to go with all the guns I could get ahold of, I wanted to cut my risk of it coming back again.
Also I have read a study which indicates TNBC may very well travel thru the blood more so than the lymphatic system.
I was a bit shocked to read your doc's comment about 5% benefit. I too would like to know his resouce for that information. I agree a second opinion is a great suggestion.
As other's have mentioned, we cannot tell you what to do but I will give you some links to get you started on research. Please check out the TNBC News/Resource section of the forum where you will find alot of info that will possibly help you also.
http://clincancerres.aacrjournals.org/content/13/15/4429.full.pdf - http://clincancerres.aacrjournals.org/content/13/15/4429.full.pdf
http://health.msn.com/health-topics/breast-cancer/articlepage.aspx?cp-documentid=100245747 - http://health.msn.com/health-topics/breast-cancer/articlepage.aspx?cp-documentid=100245747
http://www.medscape.com/viewarticle/709904?src=rss - http://www.medscape.com/viewarticle/709904?src=rss
http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf - http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf
http://www.mdlinx.com/hemeonclinx/news-article.cfm/3006268 - http://www.mdlinx.com/hemeonclinx/news-article.cfm/3006268
http://well.blogs.nytimes.com/2007/12/17/small-breast-tumors-can-still-be-aggressive/?apage=2 - http://well.blogs.nytimes.com/2007/12/17/small-breast-tumors-can-still-be-aggressive/?apage=2
Best of luck to you with your decision and ask any questions you have on your mind, we'll do our best help.
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: outnumbered
Date Posted: Apr 26 2010 at 12:09pm
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Hi Nilufer,
This has been a huge issue with me. My tumor was a little bit smaller than yours. I was not given the option for chemo. June will be 2 years for me and I am still haunted by this. I just listened to the teleconference on the LBBC site and Dr Dent even said even early tnbc needs to be treated agressively. (felt like a punchin the gut when I heard those words) I was given the same stats (5%) as you and then I realized that this was not a tn savy oncologist. Of course it is your decision, and we will support any decision you make. I just want you to know that my fear of recurrance is a bit higher than many others because I did not fight with all the guns (not by choice though). Hindsight is 20/20 and I cant change the past, but I still regret it.
I hope my hindsight can be of use to you.
Hugs and best wishes! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Lillie
Date Posted: Apr 26 2010 at 3:01pm
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Hi Sara,
I have been reading your posts for months but did not take note that you did not have chemo. I can see how you would carry a higher degree of concern. I guess many of us have some 20/20 hindsight regret. I wish I had pushed for radiation after chemo, but was told that I did not need it after a mastectomy. I'm thankful that you are doing well and pray you will continue to do so. I hope my hindsite can help others also. 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 |
Posted By: SagePatientAdvocates
Date Posted: Apr 26 2010 at 3:46pm
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Dear Nilufer, when you say no breast/ovarian cancer...how about cancers on your dad's side? I have not had cancer but I passed the BRCA mutation to my daughter..but I did have a profound family history of breast/ovarian cancer. sometimes the mutation can be 'hidden' on the male side of the family.. I would speak to a Certified Genetic Counselor(CGC) and ask if, in their opinion, you should test. If it wasn't so bloody expensive I would suggest testing just to be sure...If a woman is BRCA+ there is an important ovarian component to consider as well...and of course the information can be important to the rest of the family.. Your family certainly doesn't sound like a typical BRCA family but if you were <40 when diagnosed the recommendation would be for you to test despite lack of family history.. I would rely on a CGC's judgment. good luck to you..... Dear Sara, please be kind and gentle to yourself...the past is the past...all you can do now is have a good surveillance program, which I know is a giant pain...my prayers are with you that all will be well... all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Kimberly
Date Posted: Apr 26 2010 at 6:27pm
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Steve is absolutely right about the mutation "hiding" on the father's side. No one on my mother's side has had cancer of any kind. On my father's side - no one has had breast cancer or ovarian cancer. My paternal grandfather had prostate cancer two years ago (at age 87). Had surgery and all is well. So, when I was tested for the BRCA gene - I did not think for one minute that I would see a positive result. Low and behold - there is was. I tested positive for BRCA 2. Now, I am urging my brothers to get tested, as my one brother has a little girl and boy - and the implications for a higher risk of male breast and prostate cancer if they test positive could start early screenings. Further, I got in contact with several of my father's family members (who are a bit estranged and live cross country) - but wanted them to know. I have many cousins........
------------- Found breast lump Age 38 10/09 Dx: Invasive Ductal Carcinoma BRCA 2+ 11/13: BLM; No Reconstruction Stage 2B; 3 cm tumor, Clean Margins, 1/9 lymph-node positive, Grade 3, triple negative tumor ACT |
Posted By: 123Donna
Date Posted: Apr 26 2010 at 7:51pm
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Hi Nilufer, This is my 2 cents and it goes along with what Sara just said. My friend, who was dx tnbc 2 years ago, was stage 0. She did have 2mm idc portion and was told by a couple of oncs no chemo and the others said they'd do chemo. She chose no chemo, but did have a bilateral mx. After I was dx and she learned more about the aggressiveness of TN, she almost became obsessed with recurrence. She told me she regretted not doing chemo. She's recently gone to a couple more different oncs and they basically said it's too late for chemo and the longer she's out, her percentages decrease. She's feeling better now, but still wonders if she made the right decision. The problem is knowing if you're making the right decision or not and no one knows for sure. You just have to gather all your data and make the best decision for you and your situation. Whatever you decide, we're here for you. 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: Sugar77
Date Posted: Apr 26 2010 at 10:44pm
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Nulifer - further to my post the other day, I thought I would mention that my medical onc told me the chemo would provide a reduction of about 3 - 5%...similar to what your onc said. I figured it was worth doing whatever was offered. Had chemo not been offered, I probably wouldn't have pushed for it. In the end, the choice was mine and I opted in and have no regrets. Sherri ------------- DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010. |
Posted By: Taharadale
Date Posted: Apr 28 2010 at 2:47am
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Hi Nulifer, I have to agree with a the above posts . I agonised over the decision whether to do chemo or not. My lump was 2cm, clear margins, clear nodes but after discussion on the forum as well as my family and specialists I decided to take the chemo option. I am in Australia so our treatment is a little different. I have just had my third cycle of EC -one more to go, then radiotherapy for 6 weeks. Some of the things that helped me were _ TNBC is an agressive cancer and there is a chance that cancer cells have escaped through the blood supply to other parts of the body -My oncologist also said there was only a 5%chance that it had spread. - If TBNC returns it is likely to be nasty - and spread to bones or liver or brain. - If it returns it can only be treated - not cured so I felt it was important to hit this nasty cancer with everything available in the hope that all cancer cells were killed. Chemotharapy is not nice - there are side effects but it is "do able" . I pray that you will be at peace with whatever decision you make. Barb |
Posted By: M Alison
Date Posted: Apr 28 2010 at 10:07am
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Hi Nulifer, My onc handed me a sheet, based on stats for my age, overall health, stage, grade etc, that showed chemo would increase my chances of non-recurrence by 30%! It said surgery alone would give me a 30% chance of surviving 10 yrs, with chemo I have a 60-65% chance. Obviously, I chose the chemo and while not fun, was do-able and it goes quick. My choice was on the radiation as I was in a gray area of needing it with only 1 affected node, but my dr showed me TNBC research papers that show radiation helps reduce chance of local recurrence by about 10-15%. Looking back, I am very glad I took every opportunity to poison/nuke any rogue cancer cells leftover after surgery. Also, I have seen research on TNBC that shows spread is not necessarily linked with tumor size and even very small tumors can metastisize.
For future peace of mind, if I were you, I would take the chemo now. I don't think you will regret it.
Good luck to you,
Alison ------------- Age 55, Dx 9-08 TNBC, mast 10-08, stage 2, 1/6 nodes, AC + Taxol + Avastin, rad, BRCA1&2 neg |
Posted By: nilufer
Date Posted: May 02 2010 at 10:26pm
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Hello everyone:
I am so grateful to all of you for your advice, kind words of support, resources and for sharing your experiences. It really made a big difference for me as I was struggling with this decision.
I got a second opinion a few days ago. The oncologist recommended chemotherapy followed by radiation as the best way to reduce my risk of recurrence. He felt the reduction in risk, even if it was only 5% was worth it, given the nature of the tumor (poorly differentiated cells, grade 3) and my age (51). So I have decided to go with that plan, although I can certainly understand others making a different decision. I will be getting 4 treatments of Cytoxan and Taxotere every three weeks. If I tolerate the treatment well, he may give me 2 more doses. I start on Friday, May 7. Thank you Steve and Kimberly for the information about genetic testing. It is certainly something to think about and I may investigate it more. Thank you all so much again. You helped me through a difficult week. I wish all of you the very best! Nilufer |
Posted By: Sugar77
Date Posted: May 03 2010 at 6:07pm
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Hi Nilufer - I went through the same treatment as you'll be doing. Feel free to send me an email if you want any tips or have any questions about my experience. Good luck! Sherri ------------- DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010. |
Posted By: The Texas Woman
Date Posted: May 03 2010 at 6:53pm
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These percentages thrown around can be confusing so I am going to break down my own situation for you, especially since the numbers are similar. My rad onc said that by NOT having radiation, my chances of NOT reoccurring were 90%. With radiation, my chances of NOT reoccurring were 96%, a 6% difference. Didn't sound like much to me until my gambling husband broke it down by odds. No radiation, I had a 1 in 10 chance of reoccurring. With radiation, I had a 1 in 25 chance of reoccurring - a 60% difference. That was huge to me, especially since all woman have a 1 in 8 chance of getting BC, and we all know how well those odds turned out for us. Good luck to all of us forced into this gamble! Cher ------------- Dx: 7/09 TN IDC Stage llB, T2, N1, Grade 3 and associated DCIS, BRCA Neg, Taxol x 12, FAC x 4, left mastectomy March 2010 |
Posted By: Sugar77
Date Posted: May 04 2010 at 9:57pm
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Cher - I definately like those odds of doing rads. Thanks for sharing as I wasn't exactly sure what the improvement from rads would be...I just knew it wasn't optional as I had a lumpectomy. Chemo, on the other hand, was optional and I did it as well. Sherri ------------- DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010. |
Posted By: Carol (Tenn)
Date Posted: May 05 2010 at 8:15am
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Okay guys, my two cents worth!
My dx was similar...2.0cm...no nodes...I opted for chemo and rads....threw the arsenal at it. One year after dx, it recurred. Now don't get alarmed....my question is where would I be now had I chosen not to do any or part of it. I don't think I'd be here typing my merry little heart out. So my advice.....USE THE ARSENAL!!
Love and Prayers,
Carol ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |