MRI for screening

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LisaPetisa
New Member


Date Joined May 2005
Total Posts : 5
   Posted 5/18/2005 6:21 PM (GMT -7)   
Hi, I'm new to this community forum and everyone seems wonderfully supportive of each other! I've never been diagnosed with BC but I had Hodgkin's lymphoma over twenty years ago when I was a teenager. My doctor says that the radiation I received for the Hodgkin's puts me at a high risk for BC, especially since I was under 30 at the time. The doctor said that mammograms are not a good screening method for women under 40 because the breast tissue is dense and an MRI would be better for me because it's more sensitive but there's a high rate of false positives. I recently had a lump removed that thankfully turned out to be fibroadenoma. Is anyone here high-risk but never diagnosed? If so, can you tell me what your experiences have been?

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 5/18/2005 6:53 PM (GMT -7)   
Hi Lisa-
Welcome to our community, and CONGRATS on being a 20+ year cancer survivor! I think they are beginning to use MRI more and more for screening in high risk women, but it is not the standard of care. I was diagnosed at 30 (now 36) and still get annual mammograms. I expressed the same concerns about the lack of effectiveness of mammograms for us younger gals. My surgeon still felt confident with it and never recommended anything but the mammogram. My other docs seemed ok with it too, so I made up my mind that since I do trust them, I needed to follow their advice...or find a new doc.

I would recommend that you consult a breast specialist, not just an oncologist. Your local hospital or university hospital probably has a cancer center, which may have a breast clinic. At my cancer center, the breast clinic sees women with healthy breast conditions (non cancer) and high risk women. They will probably want to follow you more closely.

Good luck,
Lori


Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 5/19/2005 7:38 AM (GMT -7)   
Hi Lisa,

Welcome. I was not high risk, but I do want to commend you and your doctor for being so diligent with follow-up now. My husband had Hodgkins Lymphoma and all the chemo and rads that went along with that when he was 19. 16 years later (9 years ago now) he was dx with a nerve sheath sarcoma on the back/side of his arm which was on the periphery of where all that radiation had gone way back when. So, more chemo, surgery and rads and he is now considered cured. We did find out during the sarcoma time that it is not uncommon for the earlier radiation to cause a secondary cancer. So, not to scare you, but please continue to demand great follow-up care. I'm so happy that you were treated successfully for your Hodgkins. Congratulations on being 20 years past all that!!!!

Take care,
Laure'
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 5/19/2005 8:15 AM (GMT -7)   
Wow, Laure' that is great feedback for Lisa and has a positive outcome! Lisa, I think to piggy back on Laure's comment, keep in mind that breast cancer, when caught early, has excellent survival rates. So the key is early detection, self exams will be critical too. I was 30 and found mine by accident, as I was not doing self exams then, nor was I being routinely checked with mammograms. Be your own best advocate!

Good luck,
Lori


LisaPetisa
New Member


Date Joined May 2005
Total Posts : 5
   Posted 5/19/2005 9:01 AM (GMT -7)   
Thanks for the replies Lori and Laure'. It was actually a breast specialist in a breast clinic that recommended the MRI. This was the first time a doctor suggested I get an MRI for follow-up but I'm glad to hear about your experience Lori because now I know that the mammograms I had been getting was also a good screening tool. Laure', you're so right about demanding good follow-up care! In the past 20 years when I moved to a new city for college, new job, etc., I've found that doctors didn't always know what sort of follow-up care to offer. Can I ask you what follow-up care your husband gets (I'm glad to hear he's doing well)? The oncologist that originally treated me used to regularly order mammogram and blood work (CBC w/differential and chemistry profile) for me. Then I moved to a new city and saw an oncologist that added a thyroid panel to the blood work order (because of the site of the radiation treatment). Then I went to this breast specialist who suggested an MRI. I'm wondering what else I might add to this list!

Thanks again!
Lisa

Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 5/19/2005 12:20 PM (GMT -7)   
Hi Lisa,

Well, after the Hodgkins, you and he probably received similar care - follow-up checking his lymph nodes and a CBC etc. After the 9 months of treatment for the sarcoma, he was seen every 3 months doing blood work, a chest CT and an MRI of his arm for 2 years. The the same stuff every 6 months for 3 years, and now just a chest x-ray and no blood work. At least this is what he remembers.

It seems to me that I recently read about 3d MRI imaging of the breasts that is supposed to be very useful. Also, I think Johns Hopkins is looking for women to participate in MRI screening for breast cancer. This could be very useful for you, although I don't know where you live. Here's the link: http://www.mri.jhu.edu/~dbluemke/breast_cancer.html

If you have any other questions at all, I'd be happy to try to help, and my husband is always more than willing to talk or email other survivors! Good luck to you, and let us know how it goes!

Laure'
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 5/19/2005 4:21 PM (GMT -7)   
Hi Lisa! Welcome to our little section of cyberspace! I have had experience with the MRI. I was part of that big study that was using MRI for screening high risk women for breast cancer (my mother and sister had bc).  The results found that the MRI is definately a good idea for high risk, but not for the general population because of the high percentage of false positives.  They found a significant number of early cancers that were not found on mammogram or ultrasound.  I was one of them! Both my mammo and u/s were "normal"! I was 44 at the time and had large dense breasts. They may not have found anything on a mammo until things  got much larger and I might not be here five years later talking about it! Your radiation treatment puts you in the high risk category and I commend your doctor for suggesting the MRI. He really has your best interest at heart.  I am not suggesting that you may have cancer, but this is certainly one of the better diagnostic tools for early detection and that is surely our best defense against this disease. Good luck! Frayda

LisaPetisa
New Member


Date Joined May 2005
Total Posts : 5
   Posted 5/20/2005 9:24 AM (GMT -7)   
Hi Frayda, I'm so glad that they were able to find that cancer early when the mammo and u/s was not picking it up! What you described was exactly what my doctor told me - that it's not used for the general population because the high false positives and it's very expensive. Because they detected it early, would you say that your treatment was "lighter" than it would have been otherwise or do you go through the same rigorous treatment but with better odds? How often did you go in for the MRI screening?

Thanks for sending me the link to that study Laure'. I was actually looking around on the internet to see if there was a MRI study being done. It doesn't look like I qualify for it though because they're looking for women with a biopsy proven cancer in one breast in the last 6 months. If I did qualify, I would definitely be interested!

Thanks for the supportive and informative messages Lorie, Lore' and Frayda! This is really helping me to think about what I need to do and reinforcing the idea of how important early detection and good follow-up is. Best wishes to you all! -- Lisa

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 5/21/2005 10:34 AM (GMT -7)   
Hi Lisa, Glad you were able to get some help here. I really have nothing informative to add, but wanted to say Hi and welcome. Hugs Mary K. (MK)


ardee
Veteran Member


Date Joined Sep 2003
Total Posts : 854
   Posted 5/21/2005 3:45 PM (GMT -7)   
Hi Lisa,

I just wanted to say that my son's close friend had Hodgkins disease about 6 years ago when she was in high school and has been successfully treated for it. But I wasn't aware of the higher risk for BC. I'll pass it on when I see her again. Thanks for the info. That's what this board is about. We provide information and support, and we share laughter and tears. Welcome, Lisa.

Hugs,
Rita


LisaPetisa
New Member


Date Joined May 2005
Total Posts : 5
   Posted 5/21/2005 9:32 PM (GMT -7)   
Thanks for the warm welcome Rita and Mary, everyone is so wonderful here, I just want to give everyone a big hug! Where's the "huggy" icon? --Lisa

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 5/22/2005 7:59 AM (GMT -7)   
Wish we had a huggy icon and a couple of others like praying hands. Many of us have been together for several years and we are always glad to add more new friends, altho we hate to have women need to come be a part of this group. Hugs MK

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