Support.............................

Mary Jo · 09-30-2006, 04:27 AM

Hi Sadie,

A HUGE hug I send your way. Your feelings are very normal. More normal than not if you ask me. This journey can definitely be a roller coaster ride. One day we are in the valley and the next we are on the mountaintop. Waiting for results is the WORST kind of valley and your fears are justified.

I pray for you that your results will be normal. Keep us posted.

marejo

MCS · 09-30-2006, 05:00 AM

well, Marejo, as you can see I'm a basket case as well. I'ts almost 5am on Saturday and I can't sleep. I'm not off herceptin yet but I do worry about will happen when I am.

I think the fear of recurrence can be high at times. To me, it's like there's no REAL uptime anymore for me- I'm either a little down or cautious but never free of anxiety.

As you come near the end of herceptin, I think it's a natural response. I'm sure you are concerned abut being proactive to cath anything as early as possible but the test can be quite exhausting and they wreck me emotionally for sure.

Also it's the fear that, if off herceptin, can your immune system fight any other new developments. That is what scares me the most. Now YOU ARE ALONE.

I'm planning on contacting some form of couselor becasue this is tough stuff to handle on my own. Just like the other ladies that wrote, I also have difficulty planning anything.

I hate the constant testing and waiting for results but if it buys me time and get treated then I can handle it. But I give up a week before and after the test with anxiety- like having a period again, a week before, during and after LOL.

The rest of us look up you who have finished and are carrrying normal lives. It's encouraging for the rest of us. So I appreciate the positive comments in this thread and the words of wisdom.

thanks

MCS ( maria)

stephanie59 · 10-02-2006, 02:37 PM

This is one of the most depressing, yet not, threads I have yet to read. I am an 8-year survivor ER/PR+, HER2+++. I had 4 AC and 4 Taxol no Herceptin at the time or since because I do not fit the profiles. I read about all of you taking Herceptin and more Taxol than I did and rads as well and it makes me feel like a time bomb ready to go off. My onc also does not believe in test and scans without symptoms. The problem is I don't know what symptoms I am supposed to look for. My lower back has been hurting (not excrutiating) for months, but I just thought it was old age or something. After looking at this site for a few weeks, I called him and insisted on a bone scan and am waiting for the results as we speak. I have also had a CEA added to my blood tests (already get a CA-15) and am trying to the the HER2serum test as well.
What we have here is whether groups like this are a positive or a negative. Is it better to live happily in ignorance or with anxiety but be better informed? I know I have been a virtual basket case for the last few weeks when before I hardly thought about the cancer except to think I was surviving. The only thing you can control about recurrance is the ability to catch it sooner than later and I guess that's what we all hope will happen with scans and tests. Good luck to everyone, Stephanie

sadie · 10-02-2006, 03:23 PM

Hi everyone,
I know I said I was going to see my onc on Tuesday, but I confused it with my annual mammogram. Anyway, I saw the onc today; She got the cat scan results. She said the catscan looks good! (Yay!) Nothing showed up regarding the blood in the urine. Kidneys are fine (she didn't mention bladder,tho, but I'm assuming that was fine too).
She did say that the report mentions fibroid tumors in the uterus (which I think I've been told before). She said it also noted a 7mm spot on my liver

. BUT she immediately told me not to worry about that. She said more-times-than-not, this means nothing. That is one reason she does not believe in doing scans unless warranted by symptoms. She said so many times spots can show up and it can be a blood vessel or something that has absolutely nothing to do with cancer; And this causes needless anxiety for the patient. But, she said that since this DID show up on the scan, she will do a follow-up scan in 3 months to see if it has grown, shrunk or stayed the same. Has anyone experienced this?
She also did a urinalysis to see if I still had blood in my urine after taking antibiotics. She was quite surprised when she saw that I never had a u/a done at her office since my initial exam last November. She said at that time I had bacteria in the urine.
Has anyone ever experienced blood and/or bacteria in the urine and have it turn out to be nothing?
I am fantastically relieved about the catscan results and at the same time still a little concerned about the blood in the urine. But for the most part, I am much better today than I was last week!

Thank you all for your input on this site. It's an emotional life-saver!
And thank you Sherry for relaying your personal experience to me. That made my week-end so much more enjoyable than it would have been.
I don't know what I would do if it weren't for this site!
Thank you all.

CLTann · 10-02-2006, 05:11 PM

We are all devastated in facing the unseen time bomb. It is almost like our facing the unseen terrorists, not knowing when and where they will strike. Many of our doctors' offices do not seem to help in consoling our feeling: slow and vague reporting.

It is our decision to face our lives with courage and determination. Do all we can to fight the disease, help each other in information and support. Live a happy life, don't let the disease or the imaginary disease be our master.

Take all nutrition aids and do the exercise so that your body can fight with its own immune power. Seek spiritual and mental help if you need support. I love you all and God bless all of us.

Ann

micheleu · 10-02-2006, 05:38 PM

Marejo,

meet the most "worried" patient my onc. has seen he said!! I had 34 pos nodes and now i'm 3 years out! The scariest was getting off Herceptin. I begged my onc for more. He said NO. Now i'm glad he did. I felt a kid in a candy store getting shut off from candy. To make you feel better, my onc told me they have not had ANYONE recur in 5 years on the Herceptin trial. I had to ask several nurses to believe it. I don't know why they had 100% not recur. The study said about 50% decrease in recurrence, but 100%, Wow. Let this be encourgaing for you. I know the first 2 years are the worst. Like Audrey my dearest friend said, It does get easier. One day you will wake up and forget to worry!

Mary Jo · 10-02-2006, 06:26 PM

Hi Micheleu,

What an ENCOURAGING post. Thank you for that. Is that really true. NO ONE had a recurrence in those who were on herceptin. I want to NOT believe it out of fear of me being the first one - haha!

I so appreciate your encouragement. God continue to protect you from this disease.

Marejo