Dancin' with NED!!

I just got the report today on my PET scan and I am so happy I have to share with you all. The report states "no PET evidence of metastatic disease"!! There was a question of something showing up on a CT scan last month in T-11 vertebra, but it is not cancer. And the nodules in my lungs no longer show cancer. The PET scan took a long time, as they do, and I was praying hard while waiting for the radioactive glucose to settle in my body before they started the scan. And the whole 45 minutes or more I was in the machine, the rythmic sound of the motor kept saying to me over and over "NO EVIDENCE of DISEASE", like a mantra. I kept telling myself it was just wishful thinking, but it was like hypnosis, those words repeated emphatically over and over. I was so sure after the scan that the words were true that I told my husband the scan would show no evidence of disease. Yet this morning I nearly had a panic attack before I saw the oncologist. They couldn't find the report for about 10 minutes and my hopes got shaky. Then the oncologist looked at it and in astonishment told me what it said. Of course I have a copy. He said "No evidence of cancer! What am I going to do with you!" And I said "What, you've never had anyone NED before?" I told him how some of you have used the term "dancing with NED" and he loved it! He suggested that we continue the herceptin for another year, and I am thinking I will. However, my echocardiogram this week showed 50% blockage in my carotid arteries and one large heart artery 80% blocked and one 50% blocked so I still have the results of the heart attack a year ago to contend with. But at least it's only one main problem now and not two. The muga was 58% so I don't think the herceptin has caused any new heart problems. Any advice from any of you about the herceptin for another year? I will probably stay on femara, too.
I feel very blessed to have reached this point again in my 20-year battle with BC. This is the second stage IV in which I've reached NED. Last time it was 14 years ago. I am 75 and still have a lot of living to do. All I can say is, follow the old Swedish proverb "Yoost kip a'kippin' on!" You have all been an inspiration to me, and I told my oncologist about this site and to call me when they get new her2 people and I'll steer them to you. Thank you so much for all your help! I will keep checking this site every day and praying for each one of you! Love, tricia

Unbelievable! What an inspiration you are to us all. Any hints for the rest of us?

Much love and light,

Lisa

Wow!!! Thank you for sharing. Your story offers hope for both the newly diagnosed and those of us who are dealing with stage 4.
Best wishes for continued NED!!!
Barbara H.

[Lolly]

Yippee! It's just great to hear such good news : D

<3,
Lolly

[StephN]

WOW! We all could not get better news. ;)
You have put up the "big fight" again and knocked the cancer for a loop.
Yes, by all means stay on the Herceptin and Femara. This is a good combo. I have a friend who will be 73 and this is what is keeping back her mets this time around. She has no intention of going off either drug as long as all is stable with her. She is an over 10 year surviver.

The docs just love it when they can tell us they can't do any more for us as we don't need different treatment! Mine says." I don't know what else I can do for you now." I reply smiling that "you have done enough and I am alive and well."

What a VERY COOL message from you! I'm going to copy and clip your Swedish proverb and keep it on my desk at work. Plus, I love the mantra you used in the PET scan machine. You're a groovy person!! Too cool for school and I'm so happy for you.

Doing the dance with NED with you!!! Isn't it wonderful!!! Congratulations!!!

Congrats Tricia!

I am so inspired knowing your are NED. I am just coming to the end of my herceptin treatments and am preparing for life after treatment. The fear of recurrance still creeps in occassionally but I find profound strength and comfort from your story and others on this website that battle back to NED. It truly is helping me be less fearful of the future.

Thanks so much for sharing your great news.

Tami

Dear Tricia-
I LOVE your positive attitude and strong Faith. I am going to do what you did when I have my scans. I don't even feel sick except when I'm on the chemo. What an inspiration you are. Thank you for sharing your positive thoughts. I'll be praying for you. God Bless- Cathy

[Rozebud]

That is FANTASTIC! Can I ask about your primary dx/mets details, timing, etc? I'm going to attach a link to this post for a few others on other sites....

I just had my first PET scan today. Now I'm wishing I would have done that chant!

BIG cheers for you, Tricia!! :-) Oh, just curious... what was your primary tumor grade?

Thanks to all of you for such wonderful encouraging words. Yes, the PET mantra is free for all to try! It gave me a lot of comfort and something worked. I am not sure of the answers for you about tumor grade etc., as I was first DX'd 20 years ago and didn't know enough to ask all the questions. I know the original tumor was small, "in situ", on the right side, no nodes involved. My sister was dying then of BC because her doctor had ignored her lump until too late, and she urged me to get a modified radical and not fool around with anything else. The left breast showed calcification so we did both and did reconstruction with silicone. ( The right implant is leaking now and I would not recommend silicone to anyone! There is a soft lump the size of an apricot under that breast. ) The surgery is all that was done, then in 1990 cancer showed up in T9 and T10 vertebra and again I didn't know anything, but have had a good oncologist from the first. He put me on tamoxifen for 5 years, and shortly after that my MRI doctor wrote "healed Metastatic breast cancer" on my chart. I had done a lot of alternative things, including studying psychonueroimmunology with Dr. Carl Simonton. After the good report on the MRI scan, I sort of ignored the whole idea of cancer mets, not knowing any better, until it showed up again in lung mets, 3 smallish nodules, a year ago in June. As I've said before, they only discovered the cancer when they did a CT scan preparing me for bypass surgery because I had a heart attack June 30, 2004. This time the FISh test showed her2 (I don't believe the first 2 cancers were her2, but don't know for sure) The oncologist put me on femara, navelbine and herceptin for 6 months, then it's just been herceptin and femara since. There was a lot of fluid in my lungs at first, and I spent the month of July 2004 in the hospital while they stabilized the heart damage and watched the cancer and treated the pnuemonia which developed. In February this year I started doing Dr. Robert Young's pH miracle diet, very vegitarian, no meat, dairy or sugar, lots of veggies, some fish and soy, some fruit, and "supergreen" supplements. The PET scan was last week and shows "No Evidence of Disease", as I said. I will continue the pH diet and supplements, the femara and the herceptin. And also the positive thinking, prayer and being very vigilent this time about future mets. This website is definitely one of the "treatments" most important to me. I love reading your experiences, your courage and encouragement to each other. I don't know how I got through cancer the first two times without it! Love and best wishes, Tricia