her2 pos and recurr

[Faye]

does everyone who is her2 pos have a recurr? Don't any escape? There has to be some who WITHOUT Herceptin have not had a recurr? I am her2 pos as well. Anyone please write to my email address of any good news about this. Thanks and God Bless,
Faye.

[Ron]

Faye,

I am sure there are women who do not have recurrence. The problem as I see it is; that those women have or think they have NO NEED for sites such as this. Before Cyndi's mets, we did not even consider searching for a site about women with mets. Truthfully, we were simply not involved / concerned with those thoughts.

I think most folks would like to move as far away from the breast cancer issue as possible. It is only after the reality of mets greets you that one looks for a place like this. I wish we all had "No Need" for this information but.... Thank God Christine and Joe chose to do the world of HER2 the service of establishing such a wonderful source of information and HOPE!

God Bless You,
ron

[Christine Adams]

Hi Faye,

There was a really good discussion on this topic back in mid-February -- particulary a posting by Lauren titled "my thoughts". Go back in the archives and look for the string started by Eric called 'Her2 stats'.

Cheers,

Christine

[Elisabeth from Ontario]

The bittersweet reality of her2 is that being receptor positive is an indicator of aggressive disease, the sweet part is the herceptin.
As my oncologist challenged me when I finished my initial treatment : Choose to go on living. Indeed this is challenging, 'what ifs' can consume us. I would encourage you to walk on, Hold on to your faith, let God carry that burden.
Blessings, Elisabeth

[Barb]

Those are the same questions that have gone over and over in my mind. I asked my onc if there are any Her2+ people who don't get mets. He said, "some." We didn't discuss it any further.

Who are these "some"? What did their breast cancer total picture look like? Early stage? What type of treatment did they have? There are so many variables.

But he is always positive with me. He says maybe your cancer will never come back. But then I question the odds. I have asked him if I can have Herceptin. He ran tests, scans, etc. Thankfully, they were OK. So we're still debating the pros and cons.

I'm praying for guidance....

Blessings...Barb

[Shannon from Indy]

My doc told me that just because I am her2+ doesn't mean I will have a recurrence. He said that it was more aggressive, but not that much more. I am 43, Stage 2b, grade 3, one node +, and he said that I have about a 70-75% chance of it not coming back. He said with Herceptin it may be more. I was only able to take Herceptin 5 months out of 12 (on trial), due to heart problems. He told me that I could have had enough Herceptin to do the trick because they just don't know how long is long enough to take Herceptin. He also told me that it was most beneficial to me when I took it along with Taxotere.

Like one of the other girls said, I am just going to live my life and not worry about recurrence because it will consume me and that's no way to live. If it comes, I will deal with it at that time. Why worry about something that may not even happen. Worrying is not going to determine your fate.

All of us on this board are the pioneers of Her2+ and Herceptin. I hope we can prove that Herceptin does save lives and I hope that will happen before cancer takes another sister.

Health to All,
xoxo,
Shannon

[Chandi]

I wish I could have been more of help.My recurrence on the scar of the mastectomy appeared after 4 years of the 1st dx and mets are knowen to have taken place after 8 years. Just see the cycle every 4 yrs with tamoxifen. Unfortunatly, I still could not find my HER2 receptor status in my previous tumors, as I still could not get acess to them.

[LOLAM]

Following is a note I wrote to myself when I was so fearful of having a recurrence. I did have a recurrence afterall and my conclusion of the note I wrote myself was exactly right! Don't worry about tomorrow because the trouble in tomorrow will surely take care of itself:

June, 2001....We had a good weekend Celebrating our 31st. I will tell you about an illus. God gave me while we were there.We decided to go for a walk on a trail in the woods. We left about 12:30, 1:00. We took a water bottle, the binoculars. We got to one sign that said Kalispell Bay, 3. "3" is such a small number so I thought that would be a nice little walk and to a Bay - that would be pretty. We already were staying at a bay and another one would be just as nice. So we took off. The trail was very rugged, up and down. I had to stop for air many times. We were sure the bay was close but the trail kept going away from the water just when I thought we must be there. Finally we decided that we just were not going to get to this bay on the trail we were on. For some reason, I guess, I thought when we got to the Bay we would go back an easier way or find a different mode of transportation. But we were still in the woods and it was now 3:00. We had been walking pretty steady, albeit slowly. I do not have all my strength back yet, but I was keeping up. Bob finally said we would have to turn around and go back. He figured we would get back at 6:00! I was just horrified. I was so tired and to think we would have to go back the same trail and we would have to keep walking from 3-6! It was just beyond me! I panicked a little because I really thought I did not have the strength left to do that. But we had no choice. We were the only ones on the trail and we had no other way out at all. There just was no other choice! So we headed back. At first it was all downhill. I remember how uphill it was before! I was just doggedly walking along, quite fast downhill like that. Then it leveled out and I just followed along behind Bob. I thought, "What would I do if Bob was not here? I surely would not make it at all." As I was walking along God began to speak to me so clearly. You know how that is! He began to say, "Lola, you have been so worried about recurrence. Well, this walk back to your cabin is going to be an object lesson for you. I know how much you hate to travel on the same trail back again. You know what lays ahead, how exhausting it is, the creek you climbed over, the hills, the bugs, and the tired legs. I know the thought of walking from 3-6 seems impossible to you. But there is no choice and here you are half way through. You didn't think you could do it, and I know how much you do not want to do it. But here you are. Bob is here to encourage you. You stop and take a breather and then renew your strength and you are off again." Then a big doe ran through the woods and I noticed some wild flowers I had not seen close to the ground on the way in. We lay on the ground in a bed of pine needles for a while and just looked at the pines and listened to the sounds of the woods. Then we took off again. At one point it was actually euphoric. Our legs were like rubber and then it was mind over matter. It was the sheer strength of the mind and not the muscles. "You will see that if you go through recurrence, you will have all the strength you need. You will learn and see some new things the second time around. You will still have Bob to encourage you to keep going." When we got back, right at 6:00, just as Bob had said, the cabin was so much sweeter, the lemonade was the best we ever had! We appreciated everything so much more than we did before. And the satisfaction of being able to endure that trip!! Well, that will be a source of strength whenever I need to be reminded just how far I can go, when I meet the next challenge of life! God didn't tell me that I would go through recurrence; He just said, "If you do, you will make it. You may not like it; you won't want to go the same route again; but you can and you will complete the course. You will surprise yourself that you will have the strength that you needed and you will be revived all along the way. So don't be afraid of recurrence, because you can do it! With a little help and a few rests, you can and you will do it." It was such a vivid illustration to me and left such an impact on me that I am not the same. I do not fear recurrence anymore in the way that I had previously. Of course, the last thing I want to happen is recurrence. This living illustration though, has helped me a lot. I think that will stay with me in the months ahead. It is definitely something that will give me courage when I have a time of fear or dread.

[Christine Adams]

Dear Lolam,

I do a lot of 'lurking' here and only write occassionally, but I just had to tell you how moved I was by your post. What an incredible, evocative, beautiful story. The tears that you brought to my eyes were not tears of fear but of relief and determination. I am only at the beginning of this journey -- just finished official treatments and am waiting to find out which group I'll be in for the HERA trial -- and, as you were in 2001, I am dealing with the 'terrors' of potential recurrance. You have reminded me, that I have been through so much already and with the loving support of my wonderful husband I CAN get through more if I have to.

Thank you so much.

Love & Hugs,

/Christine