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maryjahn
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Posted: Oct 16 2009 at 6:16am |
I am newly diagnosed and my doctor told me that ACT does nothing for breast cancer. My doctor also informed me that chemo is only absolutely necessary if it goes into the lymph nodes. This is contoversial to some but I am going to an integrated doctor who is preparing my body for surgery and possibly chemo. Get the book: Anti Cancer: A New Way of Life--it will help save your life and get you better informed. I would do further research or get 1 more opinion if you can.
I am concerned that when they did the lumpectomy they didn't clear the margins--I thought that was standard. Why anyone would put you through a lumpectomy twice.
Are you doing anything with changing your diet or including exercise? This is incredibly important.
Best
Mary
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krisa
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Posted: Oct 16 2009 at 8:03am |
hi mary,
i have not heard that chemo is only necessary for node positive.
i had a lumpectomy and a re-excision. a doctor can see the tumor if it is evident or marked, but not the tentacle microscopic cancer cells that are in the tissue. the surgeon makes a large cut around the tumor bed and then the pathologist examines the tissue to determine if the margins are acceptable, if not, a re-excision is then performed.
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trip2
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Posted: Oct 16 2009 at 8:13am |
Mary,
Cancer can travel thru our body even though we do not have any positive nodes. Chemotherapy helps to chase any down that may be rogue cells.
Edited by trip2 - Oct 16 2009 at 8:18am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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Carol (Tenn)
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Posted: Oct 16 2009 at 8:50am |
Mary,
I was node negative. My onc said the same thing as Pam said. Even then some cells can hide. That is what happened to me. I had a recurrence of the primary cancer because of those sneaky little tn cells.
Just like Krisa said...most cells can't be seen by the naked eye. That is why an excision is usually done.
I had clear margins after my mastectomy but on one side the margin was only 1.5mm. Tiny, very tiny. That's were mine recurred.
They took out the new tumor then re-excised the area...as of now NED
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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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vickyann
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Posted: Oct 16 2009 at 8:53am |
invasive...hate that word Pam..
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Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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unklez
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Posted: Oct 16 2009 at 11:06am |
MaryJahn,
Welcome to TNBC Foundation!
Your doctor must know something about your tumor and chemo that none of us knows. Could you please tell us about your specific cancer, size, location, ER/PR/HER2, Grade, KI67, node involvement as well as your age. You may want to add all this info to your signature under Settings/Edit Profile.
Also, I'd take at least one other medical oncologist's opinion. Go to an oncologist unrelated to your current one. Best and unbiased opinions are usually provided by reputed oncologists associated with teaching hospitals.
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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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maryjahn
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Posted: Oct 16 2009 at 10:05pm |
Because I am newly diagnosed I don't have all of the information yet so until I have the results in, I haven't posted my status. I have triple negative cancer--I thought I was stage 1 prognosis good, but the surgeon told me mine was a difficult case because I have 2 tumors, one at 4 o'clock and on just left of my nipple and that makes me stage 2. Both on the left side--Skin saving mastectomy is what the surgeon told me. The oncologist won't be involved until all my tests are in MRI, CT Scan and Bone Scan. I plan to also have another doctor run tests on my biopsy tissue to see which type of chemo, if I have to have it, will work best on the cancer in my body. They do this in Europe but it is considered controversial in the US. I'm just trying to up my odds of survival any way I can.
Because I am working with an integrative doctor, I am receiving other treatments to strengthen my immune system plus I am using diet and excercise. I have also been doing a lot of research on breastcancerchoices.org. I agree with what many doctors now believe: one, that our food no longer provides proper nutrition or support for our bodies (hence I now eat organic only) and two, we are iodine depleted which allows cancer to develop in our bodies in the first place. I am 3 weeks in using Iodine & natural Thyroid medication and I have had positive results from this while taking additional supports. There are those who believe that this type of program can prevent cancer from coming back. I hope it's true.
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unklez
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Posted: Oct 17 2009 at 5:32am |
Dear MaryJahn,
Complimentary therapies are good but I really urge you to consider a second surgical opinion. Bifocal tumors do tend to reduce the chances of successful lumpectomy but they are possible.
The biopsy test sounds like a good idea. For TNBC, I could not find anything from the doctors here on it but would be very interested in knowing more. Is this to test CK5/6 or EFGR or TOP2A or something else?
Please keep us posted.
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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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girlpower731
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Posted: Oct 17 2009 at 3:15pm |
This question may sound odd for some, but I've been on the pill for a long time and haven't been off it in a while.
Here is my situation:
Sept 28th Got Lupran shot (to suppress ovaries to keep them safe)
Sept 29th Had first AC treatment DD
Oct. 10th Got my period (horrible migraine like you would't imagine - common for me when have period)
Oct 13th Pretty much done with period
Oct 15th It's back! How does this happen? Call it spotting, breakthrough bleeding, whatever, has this happened to anyone during chemo?
Oct 17th Still here and looking to buy some real estate property (jk)
I thought when it went away it wouldn't come back 2 days later. The last time I had something like this happen, I think I was 11. Other than the inconvenience, this seems ok, right? I'll mention it on Monday when I get my blood drawn (I'll stop by my nurse).
Also stuff to mention--
My scalp hurts with the hair loss. A 15 year survivor pal of mine didn't have this happen to her so I guess I'm the lucky one. Also, with Adriamycin and Cytoxin, is it normal for my skin to hurt and be tender, specifically my back and my neck all around--soft to the touch.
I'm hoping the scalp thing subsides soon as I can't even think about putting on a wig or alternative wig. I am just using my night cap atm (it's the weekend and no one is around but my husband). When I go out, I'll throw on a hat from headcovers. Out of curiosity, has anyone tried the eyebrows from that site, either the 3 day tattoos or the makeup? My Look Good Feel Better for Tuesday just got cancelled so I was looking forward to that with my new hair loss, now I have to scramble to figure things out. The next one isn't for another month.
When I get to the next type of Chemo in late November -- Taxol, is it usually easier on the side effects having just this chemo and not AC? I am still having it DD. I know everyone is different, but any thoughts would be appreciated. Thanks.
Girlpower
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dx: age 31. Stage 2a, BRCA1/2 -, Lumpectomy 8/09, AC/Taxol dense dose 9/09-1/10
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Carol (Tenn)
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Posted: Oct 17 2009 at 3:25pm |
GP,
I found taxotere (what I had) was easier as far a nausea, but fatigue was bad for me. Also, thrush. That was a pain. Some have neuropathy problems as I did. I felt like I was walking on golfballs. The balls of my feet were a little swollen. My nails split but that wasn't a problem for me, I just kept them cut short. As you said, everyone is so different. Some have worse side effects than me and some not as bad.
I hope and pray you are in the latter group.
Love, Hugs and Prayers,
Carol 
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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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maryjahn
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Posted: Oct 17 2009 at 4:38pm |
The tumour under my nipple is too large to do a lumpectomy. I think it goes all of the way under it which requires mastectomy. The only way to save my nipple is to try and shrink the tumors, then and only then would I have even the slightest chance of a lumpectomy. The surgeon is notorius for saving the breast and wants to do a skin saving procedure, he's the best in his field and head of the breast cancer dept. at City of Hope and he also works at Huntington Hospital Cancer division in Pasadena which was voted the number 1 hospital in the nation. I am very lucky to have him. I did a lot of research and all of the sites including Mayo Clinic's site says my tumor location plus 2 tumors rules out a lumpectomy:(. By the time they clear the margins there won't be anything left.
I am following the Breastcancerchoices.org protocol for Iodine. I am taking intraveniously 2 x per week large quantities of Vit.C, D3, Magnesium and minerals. I am taking enzymmes. I am taking homeopathic remedies. I am drinking green tea 3x per day known to cut off the supply to cancer cells. I am only eating things listed in the book: Anti Cancer A New Way of Life--although I don't eat meat ever. It's recommended by tnbc on the alternative site and it is changing the way that I view my cancer.
I am not sure yet what the procedure is called--I will ask my doctor because I need to make that appointment soon after the results from all of my tests are in.
Edited by maryjahn - Oct 17 2009 at 4:41pm
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maryjahn
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Posted: Oct 17 2009 at 4:47pm |
My oncologist is the best in the business and got into it after losing several members of his family to cancer. He does work at one of the best teaching hospitals and is very reputable and I completely trust him.
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unklez
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Posted: Oct 17 2009 at 6:24pm |
Dear MaryJahn,
It sounds like you have done your homework and researched the subject well. You also obviously have found good doctors and trust them. If a mastectomy is what's needed then you need to go forward and get it done. Good luck with the treatment. Please keep us posted on how things are going.
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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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susied
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Posted: Oct 18 2009 at 4:57am |
Carol (Tenn) wrote:
GP,
I found taxotere (what I had) was easier as far a nausea, but fatigue was bad for me. Also, thrush. That was a pain. Some have neuropathy problems as I did. I felt like I was walking on golfballs. The balls of my feet were a little swollen. My nails split but that wasn't a problem for me, I just kept them cut short. As you said, everyone is so different. Some have worse side effects than me and some not as bad.
I hope and pray you are in the latter group.
Love, Hugs and Prayers,
Carol  |
Compared to AC..Taxol is really ugly!!! Between the T and the neulasta I feel 110! Every bone seems to hurt, my joints are crying and my feet feel like they are someone elses.........not whining here but I do not like these side effects one bit! Have had no nausea but feel everything else times 2! Nails hurt but no splits or loss yet but wouldn't be surprized when that starts...I will take AC over this anytime....
susied
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tasoulla
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Posted: Oct 18 2009 at 5:27am |
Hello,
my mother age 53 was recently diagnosed with an aggressuie breast cancer, triple negative, lympho nodes 7/35.
the whole situation is a shock for us and changed our lives....
she will start the dose dense chomo treatment and i wanted to ask for your opinion.
what is better to make the dose dense( anthracyclines every 2 weeks x4, and after Taxol every 2 weeks x 4)?
or is better to have the anthracyclines every 2 weeks, and every week Taxol?
i will appreciate your honest opinion, on an advise for a better treatment.
thank you
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unklez
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Posted: Oct 18 2009 at 5:34am |
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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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Carol (Tenn)
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Posted: Oct 18 2009 at 6:17am |
[/QUOTE]
Compared to AC..Taxol is really ugly!!! Between the T and the neulasta I feel 110! Every bone seems to hurt, my joints are crying and my feet feel like they are someone elses.........not whining here but I do not like these side effects one bit! Have had no nausea but feel everything else times 2! Nails hurt but no splits or loss yet but wouldn't be surprized when that starts...I will take AC over this anytime....
susied [/QUOTE]
Is Neulasta the shot they give you to boost your white count? I only had that once and it didn't bother me. I had no joint pain with any of the treatments, I consider myself very lucky!!
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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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LRM216
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Posted: Oct 18 2009 at 8:47am |
Tasoulla -
That is exactly what my oncologist had me undergo - I had 4 DD AC every two weeks, and then I was to have DD Taxol every two weeks. I had the first Taxol and developed neuropathy right away of feet and fingertips, so for the remaining three courses onc switched me to Taxotere (every three weeks), and the neuropathy dissapated and never worsened.
Please also note that a prior poster stated that her doctor said AC does nothing for breast cancer. Please remember that is her doctor's opinion only. AC & T is recognized as a gold standard of care for triple negs. and is widely used. While I can only pray that I am one of the recipients of this combo that will show positive benefit, I too trust my oncologist and her knowledge and the many others oncs that also suggest this regime.
All good wishes to you and your mom,
Linda
Edited by LRM216 - Oct 18 2009 at 8:48am
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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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LRM216
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Posted: Oct 18 2009 at 8:50am |
Maryjahn -
We all trust our oncologists, that is how it should be. All the best to you.
Linda
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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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cg---
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Posted: Oct 18 2009 at 9:52am |
Dear Tasoulla,
How very kind of you to post for your mother.
I was diagnosed at age 53 (left-sided 3-cm tumor with 3 positive nodes and vascular space invasion) in May 2007. I had dose dense AC 4 cycles followed by Taxol 4 cycles.
Many breast cancer centers in the United States have continued to use the dose dense AC + T, and AC + 12 weekly. I do not think there have been any trials completed comparing the two at this point.
I would like to think I got the 'gold standard' of chemotherapy for my TNBC back in 2007 and the fact they are still using the combination at major centers should give you a little comfort to know your mother will be receiving the same.
If you have any questions please do not hesitate to ask and hopefully we will be able to help you support your mother.
Love,
Connie
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