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Old 08-20-2009, 06:31 PM   #1
Leslie304
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Location: Hunterdon Cty, New Jersey
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Need some help and advice

Okay folks ... I need some help. IBC or DCIS? Surgery first or Radiation first?? Here's my long story short. I was diagnosed at my local hospital with IBC in April 09, hormone neg, and strongly positive HER2. I went to Sloan-Kettering for a second opinion and they also diagnosed me with IBC. I began treatment at Sloan May 1st and have not had any tumor shrinkage (but mass is stable and lymph nodes have shrunk) so I went to MD Anderson last week to see Dr. Cristofanilli for another opinion. He told me I do not have IBC, I have DCIS. (he's the IBC guy!) Sloan tells me either way it's Advanced Breast Cancer so the treatment would have been similar no matter what cancer you call it and they don't agree that it's not IBC. Sloan is recomending another round of chemo with Tykerb/Xeloda/Herceptin. I've had only one round of this combo so far. Then Sloan wants me to go to surgery regardless of progress, then radiation. MDA is recomending radiation first to shrink mass and then surgery even though the skin will be compromised by radiation. They say they have expert sugeons to deal with the skin issue. I'm not clear on the pros or cons. They're both excellent physicians. Please give me any feedback or experience you've had about IBC/DCIS differences and also Radiation-Surgery or Surgery-Radiation. These are the #1 and #2 hospitals and I feel confident with both but this is tough. I don't know what to do and I have a decision to make SOON. Also - doesn't it make a difference with regard to having mastectomy on non-cancerous breast? If it's IBC I should have a double mastectomy but maybe DCIS I shouldn't. SOS girls!!! Thanks so much!
Leslie
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2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 08-21-2009, 05:18 AM   #2
Ellie F
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Re: Need some help and advice

Hi Leslie
So glad to hear from you. I was aware that you were going to see Dr C and prayed that he would have the answer.I am a little confused about the diagnosis. If you have DCIS why are they saying it is advanced breast cancer? I understand that DCIS is the stage before bc becomes invasive and generally I thought didn't have extensive lymph node involvement.Do you have a solid tumour? How big is it?
I ask these questions as I also had some conflict about diagnosis. My first onc said IBC but my second onc was less convinced and thought I had locally advanced bc with an invasive 4.5 cm tumour and large amount of DCIS.The only positive part was that both agreed chemo then surgery then rads then herceptin.I had a single mastectomy having had numerous tests to ensure my oposite breast was clear.
I am sure you will get other replies to this difficult dilema but just wanted to say that I understand how difficult this is for you
Love Ellie
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Old 08-21-2009, 06:09 AM   #3
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Hi Ellie,
The pathology report at Sloan in NY was "poorly differentiated invasive ductal carcinoma with extensive lymphatic invasion, Grade 3 solid DCIS comprising less than 10% of tumor." I'm not sure exactly what all that means. I have a solid, hard mass in my breast. When I was seen in clinic the oncologist deemed it IBC.

I did have nipple retraction for a time, but that has resolved with treatment. There have been no skin changes or ulcerations. Lymph nodes have decreased somewhat with treatment.

MD Anderson is characterizing it this way. "Invasive ductal adenocarcinoma with grade 3 DCIS. There is a question as to whether this represents inflammatory bc vs poorly-differentiated invasive ductal adenocarcinoma." In clinic Dr. C told me he was POSITIVE this was not inflammatory breast cancer. It is locally advanced breast cancer.

Chemotherapy probably would have been similar at either hospital, and my tumor response has not been good despite targeted drugs. Now I face the dilemma of what to do about surgery/radiation which will be critical since chemo hasn't done much to shrink but has kept it under control "stable."

Anything info would be appreciated ..... thanks to everyone who might post here for me.
Good health to all of us! Leslie
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Old 08-21-2009, 10:16 AM   #4
vickie h
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Re: Need some help and advice

Good Morning, Leslie,
I was getting ready to PM you when I saw this and wanted to respond. Hallelujia! You don't have IBC...that is the best news I've heard in a long time. I just knew that Dr. C. would be giving you some very good news. He is the IBC Dr., though there are some doctors who have become quite experienced in this field. I would assume (and that is a big word) that he would know IBC when he sees it, yet we're all infallible to some point.
My Onc is here and says she has heard of instances where they do give radiation before surgery to shrink the tumors with no adverse effects during or after surgery. She said the Mayo Clinic is doing a study with targeted radiation involving small injections or tubes that are put right into, or seeded, the tumor itself without harming the other tissue before surgery.
I know this leaves you in a quandry, wondering which way to go. Texas is far away, yet with a great Dr. and Sloan is highly recognized as one of the best, but I would go with your gut feeling. If chemo hasn't shrunk the tumor, then radiation just may be the answer. Since there seems to be some debate as to surgery after and healing issues, I would really research that. My Onc seems to think it is just fine, that shrinking the tumor at this point is important before surgery. She's just surprised by the IBC diagnosis in the first place and said she has seen that a couple of times.
I wish I had the answer for you, sweet sister. Will your Sloan Onc do the rads first?
Today I am feeling positive about Dr. C. and his diagnosis. Not having IBC is a blessing beyond belief. It is wonderful. We'll deal with the other IDC and zap it right out of here.
Please let me know what you find out or decide. I'll do some more research on it myself.
Sending you love and God's healing thoughts,
Vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 08-21-2009, 11:13 AM   #5
atee
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Re: Need some help and advice

I have heard of women being given the dx of IBC, only to go to the IBC clinic and find it is not. Our board member Patty Jennings was misdiagnosed with IBC, and then correctly diagnosed with 'invasive'. Unfortunately her lung mets were so far advanced she lost her battle just this last Feb. She was my friend and I never saw such a fantastic attitude during her ordeal.
Again, unfortunately there are too many women misdiagnosed...either with IBC or as non-IBC.
I know this doesn't answer your question, and I do understand your predicament. If the doctor with the biggest amount of IBC patients and the data base feels you do not have IBC, my gut feeling would be he is probably right. But of course I am a bit biased and have seen his work, and know his patients.
My daughter wouldn't go to Texas, and I begged her to go with me. But that is another story.
If you ever want to talk, I'm here Leslie. I don't know how I send you a private post to give you my phone number, but would be more than happy to talk with you.
Patti
Patti Bradfield, President
Inflammatory Breast Cancer Foundation
www.eraseibc.com

The IBC Foundation Radio Show live and podcasts from previous shows
www.thruoureyes.org/ibcshow.html

www.komonews.com/ibc/
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Old 08-21-2009, 03:07 PM   #6
Midwest Alice
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Re: Need some help and advice

Hi Leslie, Did you sign up for a my mdanderson email account while you were there? Did you get a list of Phone numbers. Dr. C's nurse, social worker? I think you should contact MDA and ask why its better to shrink the tumor first. I kind of remember reading somthing about it being better.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 08-21-2009, 03:16 PM   #7
Midwest Alice
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Re: Need some help and advice

"MDA is recomending radiation first to shrink mass and then surgery even though the skin will be compromised by radiation. They say they have expert sugeons to deal with the skin issue."

If Dr. C said this it is true. So you can factor out the negative skin issue
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 08-21-2009, 03:25 PM   #8
Midwest Alice
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Re: Need some help and advice

Hey Leslie I am having computer problems. so I am getting a little on at a time.

I read something a while back about life expectancy being better or less aggressive reoccurrence if the tumor was reduced first. Something like that. It would be research I read and just wondering if this may have showed up in a study somewhere.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 08-22-2009, 03:55 PM   #9
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Thanks everybody for the great advice here. I'm so grateful we have each other to lean n on so many levels. I've got some follow up work to do now. Thanks, thanks, thanks! Will post again and update.ryy
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Old 09-02-2009, 03:41 AM
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