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Any node-negatives decide against chemo?

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Winkie View Drop Down
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    Posted: Jan 09 2008 at 5:01am
Greetings from a newbie (dx. 12/1).

Anybody out there decide against chemo?

I was lucky to have a successful surgery on Dec. 11th. I had clean margins and no node involvement, although the tumor was 1mm from my chest wall -- scary! I'm meeting with a naturopath on Monday and a medical onc on Tuesday, and I'm really wavering on what I perceive to be the limited benefit of chemo (for me) versus the permanent damage to my body. Of course if I had node involvement, I would be singing a different tune!

Anyone else on the fence like me, or have already made this difficult decision? Anyone go with alternative therapies, i.e. drastic dietary/lifestyle changes, etc.?

Many thanks for your feedback.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sftfemme Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2008 at 2:08pm
Hi...and welcom.  I wish I could say I faced the same thing but I had node involvement 3/20 were positive so Chemo will be my friend.  I think you need to look at everything.  Your age, the grade the cancer was, the fact that it was that close to the chest wall, and of course that it was trip neg and so there is no longer term treatment.  Ultimately the decision has to be yours but dont rule out chemo completely just because of the possiblity of perm damage, so many people have chemo and go on to live wonderful lives...without reoccurrance which is what we all want.
 
Teresa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2008 at 2:53pm

Great Attitude....I have designated chemo as the best friend this body ever had, killing off any of the home invaders that remain lurking. 

I never wanted chemo....or radiation....or breast cancer! But, I got it - and I am getting rid of it with everything I have available to me. 
 
Just my humble opinion.
 
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sftfemme Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2008 at 2:59pm
I agree with you completely cq.  I should be starting treatment friday or beginning of the week (just waiting for clinical trial drug to get here) and I want to do this thing NOW. 
I'm not looking forward to the side effects but I definitely am looking forward to kicking this cancers ass.
 
Teresa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Winkie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2008 at 3:03pm
Thank you guys for your honest opinions! I hope to hear from more...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2008 at 4:26pm
Winkie,
 
According to the latest research, triple negative BC that is basal is much more likely to spread, even if the nodes are negative when first found.  My case seems to prove that out.  And since TNBC responds to chemo, I'd opt for chemo.
 
Keep your body in as good a shape as possible, care for your organs, and give your body vitamins and supplements as you need them during treatment. 
 
Hopefully, the chemo will prevent recurrence and you'll be fine.
 
Best wishes,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2008 at 5:21pm
I am a four year survivor, YAHOOO, who chose chemo.  I had four chemo (A/C) treatments and 36 radiation treatments and really was glad I made this choice.  I worked full time during both treatments, moved to a new house, (with the help of friends).  I tried to do all the right things; eat well, exercise and stay positive etc.  Since there is no treatment for me now, I don't regret doing the chem.  Bless you, I know you will make the right decision. Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Winkie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2008 at 5:25am
Thank you, Lizzie, for your reply. And congrats on being healthy for 4 years! I understand getting past those first 3-5 years from original dx is a big, big deal for us triple negs...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Winkie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2008 at 5:30am
Hi Caryn,

I'm really sorry to hear about your recurrence. And I appreciate your honesty with me. Do you mind if I ask you a couple of questions?

1. With your original dx in 2003, did you have a lumpectomy or a mastectomy?

2. Did you have chemo/rad the first time? If so, what specifically?

3. How did you discover the recurrence? Was it during a checkup, or did you have physical symptoms?

Thank you!
Winkie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote peach Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2008 at 9:04am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sportress Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2008 at 2:31pm
i have a rare cancer, triple neg, 1.6cm, clear sentinal node, less than 1cm from the chest wall, but not attached to the muscle facia. I had a lumpectomy and radiation. I refused chemo  5 yrs and 5 months ago. Still am happy everyday with the decision i made for me. Because of other health problems in the past i knew i would not survive systemic poison.
 
i have not made dietary changes, still a high protein diet which works for me, am not able to change jobs, or stop my long commute or long hours, still sleep less than 5 hrs a night.
 
Still doing just fine, and have not had a reocurrance so far.  This was my decision, i do not have family members, spouse, kids to try to influence me.
 
cece
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2008 at 4:23pm

Winkie,

 
I don't mind answering your questions:


1. With your original dx in 2003, did you have a lumpectomy or a mastectomy?
I had a lumpectomy and sentinal node biopsy.  The margins were clear and the SNB was negative.
This was considered standard procedure for 'general early' breast cancers.  

2. Did you have chemo/rad the first time? If so, what specifically?  Because they found that the cancer was Grade 3, they felt that it would be a good idea to give me chemo, even though they got it all out with the lumpectomy.  I was given 8 rounds of CMF (Cytoxin, Methotrexate, 5FU), every 3 weeks.
Then, I had 34 radiation treatments.

3. How did you discover the recurrence? Was it during a checkup, or did you have physical symptoms?
I am BRCA1+ and discovered that about a year after my initial dx.  I'd researched the standard surveillance protocol for high risk patients and followed them.  I had my ovaries and fallopian tubes removed in 2005, and got two mammograms and one breast MRI annually.  Everything showed up normal and negative.  However, I did notice a tenderness in the area between my lumpectomy scar and the SNB scar.  When I mentioned it to various doctors, I was told that it was 'cooking' from radiation.  Once, I was given an ultrasound that showed nothing. 
Last March, I went to reach for something with my right arm and I felt a pain down my arm and the area of my tricep went numb.  Again, I brought it to the attention of my doctors and they felt at worst, it was lymphedema.
Now, when I found out I was  BRCA+, I also put myself into a national study on ovarian cancer that took my CA-125 every 6 months.  In the 3 years since we started, my TMs started to rise steadily, from 6 to 20.  While still normal, the rise concerned me.  None of the doctors thought it was anything to be concerned about.
In June, I went in for my annual breast MRI.  They found a 3.5cm tumor in my right axilla.  Further tests showed that it was a recurrence that had metastacized to my lungs.
 
And the rest, as they say, is history (or would it be 'herstory')?
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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colleen View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 10:54am
Hi Winkie:  How are you doing.  Can you share with me your decision to tak or not to take chemo?  I am in your same situation.  Node negative Stage 1, Grade 3 TN....why can't I find non-chemo takers?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 11:41am
Hi Colleen, there are some out there who have not taken chemo.  I hope somebody replies to you soon.
 
I've had bc twice and took chemo for the reassurance that anything bad wasn't around inside.  Cancer can also travel thru your blood stream.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 11:58am

I had a similar diagnosis and was advised to have chemo, I suspect because of the Grade 3, which many of us 3Ns seem to have. All I would say is that it was not half as bad as I expected and my life was pretty normal on it. The hair loss is of course, very hard, but it will be back.

I think a lot of the chemos now are much easier on the body, for example a 67 y/o lady I know is going through it at the same time as me. That would not have happened in the past. My Mother had this 20 years ago, had a partial mastectomy and just radiotherapy and just turned 75, no recurrence.
 
So there's both sides of the argument for you!
46yrs: DX 12/07:Lumpectomy:Stage 2a:Grade 3: TNBC
Lymph nodes neg (SNB)
Clear CT and Bone Scan
Taxotere & Cyclophosphamide x 4,
25 Rads, Fin June 08
My Mom ER neg 1988, still here, no recurrence.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 1:47pm

Colleen,

I was 45, single parent with young kids and unwilling to take the chance. I felt I needed every odd in my favor. All dr.s recommendation at that time was for chemo although the decision was mine.

I worked all thru chemo and did what I had to for my daughters, as I really didn't have any options. The health repercussions due to chemo seemed more frightening than actualitly. What issues I do have are minor compared to what might have been the alternative.

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 colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 6:26pm
Thanks Kirby!  Iappreciate your response so very much!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 6:27pm
Thanks for helping me Katie!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Winkie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2008 at 4:35am
Hi Colleen,

After about 150 hours of research, and having my pathology redone twice, I opted against chemo and chose a nutritional/lifestyle-change approach. I am currently 6 months out from diagnosis, so I can't really say whether it is successful or not yet! But I've lost 23 pounds, feel great, and look pretty spankin' in a bikini with my newly-reconstructed ta-tas.

Disclaimer: My approach is not for everyone, and I don't assume to be a medical professional nor am I qualified to give anyone medical advice -- or any advice for that matter!

That said, I recommend a book for you titled, "Crazy Sexy Cancer Tips," by Kris Carr. And if you are interested in a very informative scientific article on triple neg, go to http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2242660

There is not much research on triple-negative yet, but this is a good article. When I had my pathology redone, I specifically asked the pathologist to look for central fibrosis and the presence of lymphocytic infiltrate. I also got tested for BRCA (negative). Once I completed my research, I felt I was in a good enough position to try an alternative approach to healing myself. If I'd been in a more dangerous sub-category, there is a good chance I would have opted for the chemo.

Chemo is a systemic approach that, I feel, has made many medical oncologists just damn lazy. (My medical onc had no clue why I was so interested in my pathology.) You could see 100 med. oncologists, and NONE of them will ever come out and tell you that you might not "need" chemo. That decision will have to come from you.

I know it's difficult, but don't be driven by fear. Chemo could cure you or kill you. But you could step out your door and get hit by a bread truck too. Do your research. Spend some time alone. And then do what feels right in your heart.

All the best,
Winkie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 12:55pm
Just one other point that I took into account -
 
I was concerned that the Core Needle Biopsy that has to puncture the tumour a number of times to get a sample of the tissue, could perhaps release small rogue cells into the blood stream.
 
I wonder if anyone has asked their doctor about this? It is quite logical isnt it?
 
 
46yrs: DX 12/07:Lumpectomy:Stage 2a:Grade 3: TNBC
Lymph nodes neg (SNB)
Clear CT and Bone Scan
Taxotere & Cyclophosphamide x 4,
25 Rads, Fin June 08
My Mom ER neg 1988, still here, no recurrence.
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