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Full mastectomy & chemo-is that it?Just wait & c?

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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=4592
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Topic: Full mastectomy & chemo-is that it?Just wait & c?
Posted By: hdeall
Subject: Full mastectomy & chemo-is that it?Just wait & c?
Date Posted: Sep 06 2009 at 1:44pm
So- am triple negative, brca 1+, had stage 1 cancer...with all factors was told to have a double mastectomy and chemo...I followed orders...and now it's just blood tests every 3 months?  Really?  is that it?  We just wait and see?  I am being as positive as i can...but am wondering how it could be that this is it?  No other options?



Replies:
Posted By: unklez
Date Posted: Sep 06 2009 at 5:04pm
Dear Hdeall,

Yes, DW and I have been told by 2 oncologists that other than periodic clinical exams and mammograms, there is not much else that's done in terms of follow up care.

Apparently as of now there are no viable and reliable blood or urine tests or scans that would save lives. So it is really the clinical exams. If you get any specific complaints, the doctors would order body part specific imaging, biopsies etc.

Regards, Unkle



-------------
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.


Posted By: hdeall
Date Posted: Sep 13 2009 at 11:36am
Thanks for the response...it's just one day at a time that's hard.


Posted By: scslayter
Date Posted: Oct 01 2009 at 7:21am
I am triple neg stage 2 grade 3, one positive node, double mastectomy ac/taxol complete on the avastin study, and have been told the same about follow up.


Posted By: Honey D
Date Posted: Oct 11 2009 at 7:24am
Did they offer you radiation after your surgery?  Based on research that I have done.  The only thing that they do is chemo, surgery, and radiation for our type of breast cancer.  Besides the clinical trials.


Posted By: hdeall
Date Posted: Oct 11 2009 at 1:44pm
no radiation since the breasts were gone...and the trials seem to be for only return cases.  the whole drug scene is starting to sound promising- but haven't read anything for us first times yet.


Posted By: maryjahn
Date Posted: Oct 21 2009 at 1:58pm
If you want answers try the support group section under alternative therapies or the new one complementary therapies.  Also, get the book by a md,phd who has survived brain cancer 2 x called Anti Cancer a New Way of Life--there are many, many things that you can do.
 
Best,
Mary


Posted By: 123Donna
Date Posted: Oct 21 2009 at 2:25pm
Originally posted by hdeall hdeall wrote:

no radiation since the breasts were gone...and the trials seem to be for only return cases.  the whole drug scene is starting to sound promising- but haven't read anything for us first times yet.


You may want to check out the section on clinical trials.  There is one I'm going to enter, SO307, Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer.  It is open to Stage I, II or III breast cancer that is currently in remission.


-------------
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: pamgentry
Date Posted: Nov 02 2009 at 2:21pm
I am stage I, no nodes, now undergoing ACT on a clinical trial w/ Avastin. I am trying to understand why there is nothing to do after surgery, chemo and radiation though that is what my Dr. tells me and I see here. I understand that there is no therapy that improves the #'s at this point but maybe the reason the prognosis is not so good is because they are not being agressive in looking for spread before it is too late. My tumor was not visible on a mammogram in Dec., then was 1 +/- centimeter in June when I found the lump and 2 C. by July when I had surgery 30 days later. Now all they want to do is do another mammogram in January on that side - if the original tumor didn't show up on a mammogram, what is to say that there isn't another one that won't show up? I asked for an MRI instead and was told that the mammogram was what was needed. Am extremely frustrated and don't know how to get the Dr. to do what I think is necessary: MRI, CT/PET scans after treatment, etc. which is what they seem to do w/ other kinds of cancers??


Posted By: rtr22
Date Posted: Nov 02 2009 at 2:35pm
Originally posted by hdeall hdeall wrote:

no radiation since the breasts were gone
 
 
Please, please ask your doctor about this......I had a double mastectomy in January 2009, followed by dose dense ACT, finished in May 2009.  I found a lump on the same breast a week ago, had it removed and it is cancer....not even 6 months after chemo.  Now, they are saying radiation and I wish I had done it BEFORE I went through the reconstruction process.  It CAN come back quickly....please do all you can to get rid of it now - don't wait.
 
 


Posted By: pamgentry
Date Posted: Nov 02 2009 at 2:45pm
I have asked the Dr. and will continue to press for more tests. I think this is something the TNBC foundation could help with. Your story is a perfect example of why testing earlier than w/ other kinds of BC is important. Thank you for your reply - best of luck w/ your treatment!


Posted By: Donna Z
Date Posted: Nov 02 2009 at 3:19pm

High-Risk Women Should Stagger Breast Tests

CancerWise - March 2009

For women at high risk for breast cancer, alternating mammograms and magnetic resonance imaging (MRI) every six months, instead of having both once a year, may offer the best chance of catching tumors.

Researchers from M. D. Anderson reported this study at the Cancer Therapy and Research Center-American Association for Cancer Research (CTRC-AACR) San Antonio Breast Cancer Symposium in December 2008.

Significance of research

Annual breast cancer screening for women who are at high risk typically includes a mammogram and MRI along with a breast examination.

"We wanted to test the effectiveness of alternating between a mammogram and a breast MRI every six months,” says Huong Le-Petross, M.D., assistant professor in the Department of Diagnostic Radiology at M. D. Anderson and the study's first author. “This way a woman receives an imaging modality screening every six months."

Background

MRI is known to be more sensitive in detecting certain breast cancers than mammography, but MRI is more expensive.

“To date, the mammogram is the only imaging modality proven to have an impact on mortality,” Le-Petross says. “We do not have long-term follow-up information on MRI yet.”

Research methods

Researchers Le-Petross and Banu Arun, M.D., associate professor and director of the High-Risk Breast Clinic and co-medical director of Clinical Cancer Genetics at M. D. Anderson, looked at the medical records of 334 women in a cancer-screening program for women at high risk for breast cancer between 1997 through 2007.

The women were considered to be at high risk if they had:

  • Hereditary breast and ovarian cancer syndrome
  • Personal history of breast cancer
  • Atypia or lobular carcinoma in situ (LCIS)
  • 20% or higher lifetime risk of breast cancer

Of these women, 86 (26%) alternated mammograms and MRIs every six months. They completed between one and four screening cycles.

  • 46% completed the first cycle
  • 28% completed the second cycle
  • 13% completed the third cycle
  • 4% completed the fourth cycle

The other 248 women had prophylactic mastectomy (surgical removal of a non-cancerous breast) or took chemoprevention medication.

All study participants were given clinical breast exams every six months. They were followed for an average of two years.

Primary results

The alternating MRI and mammography screening program detected nine cancers.

These included:

  • Five invasive ductal carcinomas
  • Three invasive lobular carcinomas
  • Two ductal carcinomas in situ

Of these cancers:

  • Five (55%) were found by MRI but not mammography
  • Three (33%) were found by MRI and mammography
  • One (11%) cancer was not found by either technique
  • None were detected by mammography alone

In five of the eight cancers found by MRI, the mammogram six months earlier was normal or suggested benign findings.

"The global picture is that MRI can pick up cancers that mammography cannot," Le-Petross says. "This would suggest it’s more beneficial for high-risk patients to have screening MRIs so we can pick up small lesions before a mammogram can detect them."

What’s next?

Hello I found this study where MDAnderson is challenging the only mammogram yearly standard. You can find it on their website but I copied and pasted it here. I too had a mammogram in Nov of 08 that was normal. It actually said come back in two years. Jan 09 felt a enlarged lymph node. 14 diagnostic mammograms showed nothing. It did show on u/s and MRI. So I too asked this question what about followup when I finish radiation in Dec 09. Here (MDAnderson) they said I should alternate u/s and MRI every 6 months. In Canada they said only followup is yearly mammogram or scans if symptomatic. I am thinking if I get a local recurrence I want to catch it before it leaves the breast. How can I expect to catch it with a mammogram? It defies logic for me. Mammogram is not as effective if you have dense breasts. I was not ever told I had dense breasts but I think important info to know when assessing whether mammogram is effective. At least it is one factor. Also if tnbc moves fast is once yearly adequate during the first 3 years pot treatment during our most at risk time? 

Questions and thoughts I have regarding follow-up

Donna


Researchers are not certain if alternating MRI and mammography will save lives.

"That’s going to take a 10-year follow-up to determine," Le- Petross says. "It’s an exciting question because mammography has always been the gold-standard examination, and now we are challenging that standard."

— Adapted by Dawn Dorsey from an M. D. Anderson news release



-------------
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09


Posted By: pamgentry
Date Posted: Nov 02 2009 at 3:27pm
Fantastic information which I am printing and bringing to my Drs. Thank you!


Posted By: unklez
Date Posted: Nov 02 2009 at 4:45pm
If your insurance won't cover MRI, see if they would cover mammos every 6 months.



-------------
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.


Posted By: pamgentry
Date Posted: Nov 02 2009 at 5:26pm
I will but I just don't trust mammograms since they showed nothing when there was obviously something there. I may have to pay for an MRI myself.


Posted By: unklez
Date Posted: Nov 02 2009 at 5:34pm
If you have dense breasts mammo don't work well. True....



-------------
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.


Posted By: Donna Z
Date Posted: Nov 02 2009 at 5:35pm
pamgentry

I so understand what you mean about mammograms. For some women they are life saving and for some it does not show. Or maybe it is the type of tumor that does not show??

Donna


-------------
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09


Posted By: pamgentry
Date Posted: Nov 02 2009 at 6:26pm
Dense breasts and tumor was "basal" like, though not actual basal tumor - invasive ductal carcinoma that they first called atypical medullary, then decided it didn't have all of the markers for that.


Posted By: unklez
Date Posted: Nov 02 2009 at 7:28pm
Anyone with dense breasts should try and have their onco write to their insurance and get MRI's approved for future follow-ups.




-------------
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.


Posted By: Carol (Tenn)
Date Posted: Nov 03 2009 at 4:38am
PamGentry,
I could be wrong but I am pretty sure radiation is always given after Chemo. Out type of bc is very sneaky and able to hide from chemo and radiation helps that not to happen. Sometimes nothing helps as in my case. I did have rad and it still hid out and recurred. But for the most part it helps.
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


Posted By: 123Donna
Date Posted: Nov 03 2009 at 7:32am
Carl (Tenn),

What was the size of your original tumor?


-------------
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: Carol (Tenn)
Date Posted: Nov 03 2009 at 8:18am
Donna,
The original tumor was 2.1cm.


-------------
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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