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To Chemo or Not to Chemo

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kjhemminger View Drop Down
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    Posted: Nov 08 2009 at 10:41pm

Hi. my Mom has just been diagnosed with Triple Negative Breast Cancer. She has a lumpectomy. Her margins were clear. No lymphnodes positive. She had one tumor, that was 1.5 cm. She was expecting just radiation. However, now that we have seen the oncologist, he is suggesting that the recommended treatment plan includes chemo. He suggested TC, 21 day cycle, 4 cycles. She is very resistant to have the chemo. We were all at the appointment, but hear different things. She interprets that her recurrance chance goes from 75% to 70% by getting the chemo. She feels like for 5% difference, it sounds like a lot of toxicicity in your body. She also thinks that she will become such a hermit in the next year if she gets chemo that she will be depressed and crabby for the rest of her life. She is only 58, 2 kids, 4 grandkids. I feel like, whatever the increase, it's life. She's now suggesting that she'll probably have alzheimer's (like her mother) anyway, so why would she want to live longer if she's mindless. I feel like she's spiraling. However, I don't want to be insensitive. I don't want her to feel like everyone is against her. But, I don't want to lose her!! I don't understand the recurrance thing. I assumed recurrance in any form was really bad/agressive, and you wanted to prevent it.

Keep in mind. My husband is a five year survivor or a brain tumor. It was benign and they removed it. He is doing very well. Never had chemo or radiation. His was emergency, and we had no time to make decisions like this. I almost feel like that was better. I know it was easier. And yes, I also know that my Mom's decision is her own. I just can't decide if she's in the right frame of mind to just let go and see what happens. BTW, she's ok with the radiation. It's just the chemo she's leaning towards not getting.
 
You are all such brave souls. I cannot imagine being the fighter, rather then the supporter. I reach out and hug every one of you for getting up and fighting every day. Fighting the fear, fighting the fatigue, fighting the feeling of giving up.
 
Thank you for your help, in advance.
 
Kim
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Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 6:08am
Hello Kim,

Your mom's fears are real and the effects of chemotherapy is awful.  My wife is six months through 27 weeks of three types of chemotherapy drugs and is suffering from it.  But four cycles is different than 27.  Five percent chance may not be worth the price.  Triple Negative is a tough cancer to beat and keep from returning.  Chemotherapy and Radiation and surgery are the only tools to fight it.  For your mom it is sort of insurance.  The premiums are very high, and nerve damage takes a long time to heal.

Have her ask her oncologist what would be the very worse effects and then see if it will be worth that five percent chance.  For us it was.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChrissieD Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 10:23am
Hi Kim,
 
Docs now always recommend chemo for TNBC.  It is very responsive to chemo.  Your mom, and all of you are still likely in shock and overwhelmed with all of the information you were given.  I would recommend you speak frankly with the onc about not doing chemo and what that would mean.  Also, consider getting a second opinion right away and have the conversation with that doc too. That may help you to see things more clearly.  Ultimately the decision is your mom's.  I would recommend finding a naturopath (if your mom can afford it as it typically is not covered by insurance ) who specializes in treating cancer patients.  If your mom does not get chemo the naturopath can recommend diet and supplements to help build her immune system and if she does get chemo then he/she can recommend diet and supplements to help better manage possible side effects from the drugs. 
 
39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3
ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09
God is carrying me through !
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 1:21pm
Dear Kim,

The decision is clearly your mom's and all you can do is influence her to do what you think is the best decision for her. But please have your mom get a second opinion from a medical oncologist. The best ones with unbiased opinions are usually found at teaching hospitals.

With 1.5cm and no nodes involved her chances after lumpectomy and radiation are very good. But neither of those 2 therapies help reduce systemic chances (also known as risk of distal occurrences or metastatis).

As you probably know, any chemo therapy reduces chances of metastatis by a third or more. This statement can get a bit confusing so let me explain with an example. IF the risk of getting metastatis in the next 10 years is 24%, almost any chemo regimen would reduce that risk to 16%. A chemo regimen that includes taxane (e.g. T in TC) reduces risk that further to about 12%. A chemo regimen that includes an anthracycline (e.g. A in AC->T) could reduce that further to about 10-11%. As you can see, the benefit of A can be marginal when the risk is low to begin with and hence the doctor may not have mentioned that.

If it helps to decide, TC is much more gentle than AC-->T.

Supplements and diet changes can make a big impact to boosting her immune system (and should be used to compliment) but please have her meet another oncologist first before deciding to go purely the alternative route.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 2:00pm
Kim,

Your mom's diagnosis is very similar to mine, except I didn't have a lumpectomy, but mastectomy.  You may want to get a second opinion from another onc - it never hurts and will most likely help her make a decision.  I had the chemo T/C also and was able to tolerate it and the side effects.  My onc told me without chemo, the chance of recurrence was 25%, but with chemo, it would reduce the chance by 50% to about 13%.  While I know these are just statistics and they can vary, TNBC responds very well to chemo.  Chemo is almost always recommended as treatment for TNBC since we don't have alternative treatments available like tamoxifen for ER+ bc. 

We're here to help.  Just let us know!

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 4:35pm
Your mom is so young.  She should do the chemo, even though it won't be fun.   I think her numbers are a little off - if she has about about a 30% chance of recurrence without chemo and a 20% chance of recurrence with chemo, she reduces her risk of recurrence by 33% with chemo.  She should think in terms of relative, not absolute risk when she makes her decision. 
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 6:48pm

Kim,

Welcome fellow Illinoisan...(is there such a word)lol I am originally from Chicago but lived in Arlington Hghts for several years. Of course that was before you were born...
 
To put my 2 cents in...I am older than your mom and my tumor was 2.1cm. I choose to go the chemo route. I wanted to blast this thing with everything available. Even so I had a recurrence. The nasty little cells love to hide. Mine did, right on the incision scar where I found the lump 4 months after finishing chemo and rads. I'm telling you this so that you know that chemo is your moms biggest gun in the arsenal. No one knows whose cancer is going to recur but at least you know you did all you could to keep that from happening.
Just my 2 cents worth..
Good Luck...my love, hugs 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 10:23pm
Kim -
 
I am a young 62, a widow, work full time and raise a 14 year old grand-daughter.  I have the same exact diagnose as your mom, with the only difference being my nodule was 1.2 centimeter in size.  I missed  just the mondays from work after the 4 DD Taxotere (had 4 DD Adriamycin first) - had all my chemos on a Thursday, had Neulasta shot each Friday a.m. after chemo and went into work - side effects hit on weekend, and usually went to work on Monday.  While I hope to God I never have to do it again, I was able to do it.
 
Triple negative has no other treatments other than the surgery, the chemo and the rads - then we are on our own.  I strongly urge your mom to consider shooting at this wild bird with all the ammo she has at her disposal.  I had side effects, low blood counts, neuropathy in toes and finger tips, but I would do it all the same. 
 
It's a nasty agressive demon - fight it as such.  Good luck and God bless.
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjhemminger Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2009 at 11:59pm
Thank you all for your continued support. My Mom and Dad have been reading your responses. You comments and advice are all very helpful. The more information you have the harder it is to sort through. But, you are all experts in the area. Great to get it from the horses mouth!! God bless back atcha. Keep on fighting. We can all beat this thing.
 
Kim
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marla Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2009 at 10:40pm
Hi - I'm the Mom! Thank you for responding to Kim and thank you Kim for finding the TN section of Komen. I have been reading and researching seen my lymphectomy 10/19. At that time I was told that according my path report all I would need was radiation and 5 years of tamoixofen. then post surgery and meeting with my Oncolgist they hit me with the big "C" treatment. They then told me my hormones were mostly negative so chemo was the treatment of choice. Not until my daughters and myself have done more research did I become aware the I have TNBC a very specific  and "agressive" cancer. Up until now everyone kept telling me how lucky I was to have found it early when the tumor was so small, clean margins and clear nodes. When in reality TN seems to just bad as almost any BC no matter what stage.
 
I'm still struggling with the fact that I feel fantastic and anticipate feeling very bad (looking very bad) once I start chemo, and I'm not convinced all the toxins and other side effects are worth the gain. Seems like I'll die of thing eventually anyway - will this treatment give me 1 or 2 more years?
 
I do have an unbelieveable support network my husband, two daughters and many friends around me but even some as far away as China. I live in Illinois but will likely do my treatments in Florida - better weather and less exposure to flu etc. Monday I go to the Oncologist again, he is doing more blood testing. I can't just roll over and accept this treatment until I am absolutely convinced. The chemo suggested is TC. I really like my Oncologist, he comes highly recommended by several doctor freinds and others who have used him. He has been around long enough to have grown with the cancer treatment research and has many years of experience. I do trust his judgement - although he does base his desicions on the NCCN recommendations. However, any more definite information you can pass along to me would be greatly appreciated.
 
I'm still struggling with all of this.   MJ
 
PS Any advice on this cold cap thing? Does it work at all? If so, where would I get one?
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 12:23am
Dear Marla,

Welcome to TNBC Foundation! I do think that you are doing the right thing in questioning whether chemo would buy you anything. We have all struggled with that and similar questions. My 2 cents are pretty much already spent in my previous post, ie, I think TC is a very proper regimen for your case (I'm NOT a doctor). Will this treatment give you 1 or 2 or 10 years no one can say. But will it increase the chances of you will get more disease free survival years - YES.

The only thing I'd add is that the cold caps apparently do work in reducing the occurrence of hair-loss. A lot of women in countries other than US swear by them. Doctors in US have not quite accepted their use. Their theory is that the use of cold caps can constrict the blood vessels and hence reduce the delivery of chemo to hair and head region which could lead to reduced efficacy. I don't know if this has been proven one way or another.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terje Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 1:28am
Regarding the cold cap and the chemo not reaching the scalp, I'd like to know how many mets end up on TNBC patients scalps? I've read about using frozen fruit, ice cubes, or popsicles to prevent mouth sores caused by chemo, does this increase the chance of mets in the mouth? I think that doing what you can to reduce the side effects to make chemo more tolerable is better than no chemo.

Regarding the side effects of TC, are they guaranteed? Or do only a certain percentage of women experience the side effects? I mean, if it's not guaranteed that someone will experience all the side effects that are causing them to decide not to do chemo, why not start chemo and if the side effects are too severe, then change your mind and stop rather than not starting at all? And if one does have to change their mind and stop a treatment rather than giving up all together, maybe find other drugs that might have different or fewer side effects.

The other thing I think is important is, if the chemo does only buy someone an extra 1 or 2 years, we should remember that there are many medical advances and discoveries that happen every day and new study trials are starting all the time. This year we have a phase 3 PARP inhibitor trial that didn't exist last year that benefits 52% of recurrent TNBC patients with metastasis while the previous treatment only benefited 12%. We also have several other PARP inhibitors from other companies in phase 1 and 2 studies. And then there's all the new things going on that we don't even know about yet.

I don't know the answers to these questions, but believe they are important things to consider.

Edited by Terje - Nov 15 2009 at 1:37am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 5:43am
I agree with both Terje and Unklez,
 
My treatment is standard for TNBC. My side effects were not that bad. A lot better than I anticipated. At the same time I've read of much more severe. A friend of mine that was diagnosed shortly after me had hardly any and we were on the exact same regimen. The most she suffered were fatigue and her food not tasting good.
So there you have it...just my 2 cents worth. My advice, go for it even if it only extends your life a couple of years. Just like Terje said...so many studies, so many chances for a cure or at least a more effective drug..
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryinSarasota Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 8:47am
Hi Marla,

I live here in Sarasota, Florida. I did my treatment last May to November. The chemo is still the standard for now. I wanted to make sure the TAC got it all, to every last nook and cranny. I work at home so it was easier for me to just wimp out when I felt like it but that was usually the 4th, 5th and 6th day after the treatment. The worst for me was feeling like I had no energy, my feet and hands got numb and tingly, chemo brain and depression. There was no nausea or vomiting (they gave me meds for that.)

There are so many people here with bald heads, men and women... I never wore a wig, just a hat occasionally due to my head being cold.

Would I do it again? Yes.. No doubt. I really, really don't want to but I would.

Mary


Edited by MaryinSarasota - Nov 15 2009 at 9:03am
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 11:52am
Marla,

Your diagnosis was very similar to mine.  I had clear margins, no nodes, Stage 1 and thought I was in the clear for no chemo.  I can't tell you how devastated I was after I met with the Onc and was told I needed chemo.  The onc said I had TNBC and strongly recommended chemo to reduce the risk of recurrence.  Since TNBC doesn't have any other adjuvant therapy like BC positives, chemo seems the only course of action at this time to try and kill any stray cells that might have escaped.   I looked at it more as an insurance policy since there were no other drugs available.  It's a personal opinion and I'd recommend getting a 2nd or 3rd opinion if it will help make your decision easier.  Wishing you  the best.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 9:20pm
Marla,
 
I agree with all Donna has said, along with the others assessment. It is not known how much time chemo may or may not give you. TN does sound so scary but I am writing to let you know I was dx 9 years ago. This was before the term TN and all they know now. You'll see by my signature what the standard for tx was then. I didn't find the chemo so hard but it does affect everyone differently. Good luck to you.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 10:59pm
Hi, Marla.  Don't panic!  Early TNBC is cured by surgery for most people, and if you add chemo to the mix that brings you Stage I's up to something close to 80% cured.  So don't think of yourself as doomed!  In all likelihood you will be fine.  You are likely NOT just buying yourself a few years. Actually, chemo at this stage will either buy you a cure or do nothing.  We TNs recur most likely recur early if we recur at all, chemo or no.   So bite the bullet and do the chemo, at the very least 'chemo  lite' (TC).  Then you 'minimize regret' should you have a recurrence, and really all it is is a sucky 4 or 5 months.  Yeah, you'll be bald and feel like cr*p some days, but it'll pass before you know it.  Really.  Your hair will grow back, your energy will return.  You will be forever changed, but more by the confrontation with your mortality than anything physical.  The transformation is spiritual.  You will know like you never did before that your days are numbered - that all of ours are, with or without cancer.  You will feel closer to everyone who suffers, anyone caught on the wheel of living and dying, which of course is all of us.  Never again will you turn your head away at a sick person in a wheelchair, close to death, as 'other'.  Rather, you will look and know in the deepest place that it's them today, you tomorrow, and that goes for everybody.  Every healthy body walking down the street.  Me today, you tomorrow.  You today, me tomorrow.   

Anyways, good luck navigating the maze, and take heart!

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 11:17pm
Dear Denise, nicely said...

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 11:55pm
No one could have been more upset than myself to learn I needed chemo. I hit the desk so hard with both fists the oncologist jumped three feet out of her chair.

I also dreaded the hair loss. But guess what... people have told me I look the best I have ever looked... and that is without my hair. (I know, it's all in the bone structure).

Nonetheless, chemo was a no brainer for me once I fully understood what I was up against. I have had little to no side-effects thus far (I am halfway through).

My advice? Do the chemo. You can't put a price on time spent with family, and your odds are good. Very good... just like mine.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2009 at 3:36am
Denise,
You do have a way with words. You said everything I would have wanted to say if I could.
Bless You,
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
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