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Old 01-25-2012, 04:50 PM   #1
Mtngrl
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New Book Questions Mammography

About six months ago a report on an "accidental" experiment in the effectiveness of mammography was published. In populations in Europe that were remarkably well matched in everything but when they started routine mammography, there was no difference in overall survival. Deaths from breast cancer went down in all of them. It was from better treatments, not from earlier detection. Now there's a book that examines other studies that claim a substantial benefit, and concludes that they are wrong. http://www.guardian.co.uk/science/20...ed?INTCMP=SRCH
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 01-25-2012, 08:52 PM   #2
Rich66
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Re: New Book Questions Mammography

I wonder about the differences between countries in what is done upon a questionable mammogram finding. I also wonder if different screening methods (digital mammo, MRI, PET) might be better.
I guess the underlying thought here is that it doesn't benefit survival if you catch a cancer before it's visible or palpable.
One of the things about studies like this..or rather the conclusions.. that concerns me is that it kind of assumes better treatments of today/tomorrow won't derive benefit from earlier detection though we don't have stats to know that. For instance, vaccines or immuno therapies seem to be an earlier the better therapy.
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Old 01-26-2012, 09:37 AM   #3
Debbie L.
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Re: New Book Questions Mammography

A whole BOOK on the topic! The bottom line for me is that this debate has been raging for so long, and each new contribution (whether a new study or just a new analysis of an old one) weights the teeter totter back and forth -- which says to me that IF there's a benefit to mammography it is NOT ENOUGH, and probably will never be enough. I'm ready to just let go of the debate and move on to other approaches to stopping breast cancer. In the meantime, let's use mammography since it's what we have, but let's not promote it as if it were the answer.

Intuitively, it sounds so appealing -- that early detection idea. But first of all, we don't know that early detection is the answer. We are realizing it has much more to do with the biology of the cancer cells (and perhaps their neighboring cells) than it does with size. And second of all, unless we're going to go lopping off breasts of half the female population, we do not know what to DO with ultra-early detection, even if we're able achieve it.

Debbie Laxague

Last edited by Debbie L.; 01-26-2012 at 09:38 AM.. Reason: left out a word
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Old 01-26-2012, 09:49 AM   #4
Rich66
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Re: New Book Questions Mammography

The strictly size approach seems to not show the whole picture. Was reading the other day that suggested a small tumor that has lymph involvement might be more aggressive than a larger indolent tumor that is apparently localized.
Well..neoadjuvant therapy is gaining steam and may be making lumpectomy more applicable. Again...early treatment in other countries may be different.
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Old 01-26-2012, 10:15 AM   #5
AlaskaAngel
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Question Re: New Book Questions Mammography

For me, what is missing is mention of any calculation estimating how many cancers are generated by the exposure to radiation for each cancer that is detected.

I would be interested in a study done on women who get every recommended mammogram vs women who get none, to know what the incidence is for each group.

Thanks for the post.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
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Exercise: 7 days a week, 1 hr/day
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Old 01-26-2012, 03:02 PM   #6
Mtngrl
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Re: New Book Questions Mammography

Debbie, Rich, and Angel, thanks for your comments. They are all good points.

The not knowing what to DO with early detection is huge. And not knowing how to keep it from metastasizing, or to cure it once it does. Far too many people get to stage iv, then it's incurable, so sooner or later you will die from it. The early detection narrative finds this truth to be inconvenient, and it tends to get buried.

The article says that the author accuses the mammography industry of falsifying data and hiding facts. In any event it is a blunt and inefficient tool, and we need to do better.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 01-26-2012, 03:09 PM   #7
AlaskaAngel
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Question Re: New Book Questions Mammography

Mine happened to be found by mammogram.

But "outside the box" thinking made me realize also that we sort of have a linear tendency when we have a local "recurrence" or second tumor locally, to just assume it had nothing to do with our repeated rads exposures. It makes me wonder why no one ever mentions that possibility in terms of analyzing the pro's and con's of mammography.

A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
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Old 01-26-2012, 05:15 PM   #8
Rich66
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Re: New Book Questions Mammography

"stage iv, then it's incurable, so sooner or later you will die from it."

Thankfully not always. Steph..Andi..MamaCZ...you
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Old 01-26-2012, 05:50 PM   #9
karen z
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Re: New Book Questions Mammography

I hate to bring this up but medical research (in general) is widely viewed by academicians as being some of the easiest work to get published. Most medical researchers (certainly not some of the brilliant full-time medical researchers we see and hear at the major conferences) do not have a great deal of research training (that is, their degrees are NOT research degrees like Ph.D.s). I have seen statistics awhile ago on rejection rates for say psychology journals (on average) and medical journals and you don't want to know about these. Most doctors who conduct research will be very upfront and talk about their lack of training in research design and analysis.
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Old 01-26-2012, 07:54 PM   #10
Mtngrl
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Re: New Book Questions Mammography

@Rich, thanks for the encouragement, and the reminder about some of our long-term survivors. I appreciate it. But. . . . They call it "incurable" because it is. They don't know how to stop it. I'm grateful to be responding well to treatment for now, and of course I hope to stay NED. But no one can promise me that.

I want to be in a world where 98% of stage iv people reach complete remission and normal lifespan, not 2%. Just think. If that were the case, then more patients could take a "wait and see" approach to treatment at earlier stages. Less surgery. Fewer side effects. Less trauma. And there'd be no need for mammography, except diagnostically. You notice something, you get it checked out. If they find cancer they give you a pill or a vaccine--something targeted to your cancer's biology, and they kill it, not you. No lymphedema. No chemobrain. No foobs.

Karen Z, thanks for the point about medical research.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 01-26-2012, 09:33 PM   #11
Rich66
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Re: New Book Questions Mammography

Hmm..a couple examples from the relatively small number of active members on the board and still the absolute "incurable" statement. The odds may be terribly harsh but there really appear to be cases where it is "cured". And that's in the previously much worse category of Her2+. for some, it appears to be a matter of using the right tool..need to get better at that...while adding to the toolbox.
But yeah..maybe different diagnostics (tumor markers, Circulating tumor cells or like) could catch things earlier than mammo and allow less drastic approaches. From what I can gather, we all have cancer(s) in us...just don't know about them clinically until they are grossly unregulated.
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Old 01-27-2012, 08:45 AM   #12
Jackie07
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Re: New Book Questions Mammography

I do wonder about the reliability of mammography. My first diagnosis was made after I had pointed the lump to the technician. The next 4 years the new growth had been misread as 'scar tissue'... So I probably would have been better off if mammography was not used...
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