Why LOOK for mets?

[lauren]

I read a lot of posts from women who are asking for scans when they have no symptoms and having tumor markers taken when they are early stage. I am sure this has been asked already...but WHY?

All of my doctors have told me that it doesn't matter if you catch mets before they present symptoms versus once there is a symptom present - that the treatment is the same and if they will respond to a given treatment, they will respond whether the mets were too small to present a physical symptom or significant enough to present a physical symptom. They also have told me that you can have a scan one month and develop mets the next. These things together have led them to not give the tests routinely.

And that makes ME very happy. I feel healthy and I want to live my life as a healthy person. I went through 15 months of treatment (including herceptin in the adjuvant setting) plus a double mastectomy, oophorectomy, radiation and now I take Arimidex. I don't WANT scans. I want to be healthy until I am not. I don't WANT to to find a tumor that isn't neither palpable nor causing me symptoms because chemo SUCKS and ruined my quality of life during the time I was on it, and I don't want to be on it any longer than I have to be.

I guess what I am looking for is a good reason to (a) get scans that I don't want to get and (B) get scans that my doctors at Columbia University do not believe that I need.

Thanks...

[Al]

Hi Lauren,
I think the response to your comment is somewhere in the middle. I agree, don't look for something just for the sake of looking. On the flip side, it would have be nice if they had caught my wife's mets before she turned yellow. I also believe that the chances of getting to NED are greater if your liver is 25% cancerous as opposed to 80%. I think what's missing here is a set clinical protoocal for HER2+ in terms of testing, scheduling, etc. So many of you have said it so eloquently, live each day as it comes; focus on today, not what could happen.
Take care,
Al

[lauren]

Did your wife have NO symptoms prior to jaundice? It seems highly unlikely that she went from perfectly healthy to yellow without any intervening symptoms. I think we owe it to ourselves NOT to ignore symptoms that persist longer than, say, two weeks.

[Al]

Yes, looking back, she had symptoms; however she was also recovering from AC + T and surgery and just started radiation: we assumed that her fatigue was a result of one of those. We have also run into the same problem as everyone else: had we been through this before or been given a technical manual on cancer, we might have played it different,
Al

[lauren]

I'm sorry....she must have been feeling really crappy, and you must be upset that her symptoms were masked by the fact that she had been feeling so crappy from chemo....that is the worst thing about chemo...how bad it makes you feel....sorry....

[Al]

Please don't feel sorry, you didn't know. We just look at it as a matter of fact.
Best to all,
Al

[janelle]

Everyone will have a different answer to this question. The reason that I wanted my Brain MRI is because Herceptin does not cross the blood/brain barrier. If I waited for symptoms, the treatment may be harsher (WBR) than if I only have one met (cyberknife). That's the impression that I get.

I just had my first Brain MRI last week and you know what, there is a tiny 5 mm spot that I will discuss with my onc. tomorrow. Should I have waited until I had symptoms? Not in my book... but it's a personal choice and I made the choice that I thought would be best for me.. find it early and while it's small... or find that there is nothing.. and have peace of mind for a while.

I am fighting for my life here... and I'm not going to be fooled by the "no symptoms" theory... too many people have found mets when they had no symptoms. I believe in scans any day.

Good luck

[Elisabeth]

I'm with you. When I finished my adjuvant treatment I had that discussion with my oncologis and the blunt truth is mets are mets- early detection does not seem to change the outcome. Our only option is to try to get the disease chronic and pursuit quality of life. "Choose to go on living" that was my challenge from my onc and remains my challenge. I was just discovered with brain mets when I seizured without warning- just visual and speech changes withing an hour before seizing. Would pushing for a brain MRI just because stopped them from coming- no, maybe averted a siezure that's all. So I will continue to go on living my life one day at a time, by the grace of God go I.
Blessings, Elisabeth

[celina]

laurn/Janelle,
I tend to agree with Janelle..last summer my sister had fatigue and a sore back...turned out to be breast cancer that had met. to bones and liver. Of course, she would not have been requesting tests as she hadn't had bc diagnosis at that point. After her diag. she had symtoms that she recognized as alarming...blurred vision and eventually severe headaches....when she told her doctor he sent her to an eye doctor! Turned out to be several clusters of brain tumors. Had she caught this early, she could have avoided WBR and all that goes with having SEVERAL mets. I'm sure if she could turn back the clock, she would have requested regular MRI's. Certainly from her experience, I feel it would be easier to treat one liver tumor instead of many tumors...it is also less painful to deal with tumors on one part of your body, instead of several parts.

[Ruth]

I feel like this post line was started because I asked about MRI's on the brain. I am not anxious to take any tests. I never have been but common sense told me that if you find a tumor smaller and located in only one spot versus 10 tumors in different spots it would be easier to treat.

Maybe I was getting nervous because of all of the posts with brain mets on this board and I shouldn't be. It doesn't happen to 100% of the people and if it happens to me I will deal with it when/if it comes my way.

I though that this board was to share feelings and get support from others? I feel as if I have been told not to share my thoughts...

[Leslie]

I have 1 friend who discovered she had bone mets when she broke her arm.

I have another friend who had a golf ball size tumor on her c-3 vertabrae, requiring a very complicated, extensive surgery to prevent her neck from breaking. She had to spend a week in the hospital and then a month at home with a feeding tube.

I have another friend who had bone mets discovered in her hip on a routine scan - no symptoms and the tech said the mets were so extensive she was lucky she didn't break her hip.

I want scans and I want the option to fight this disease the best I can.

[lauren]

My post had nothing to do with you at all. Share your thoughts. Please!!

[lauren]

Your sister had symptoms. The lesson I take away from her story is not to ignore SYMPTOMS. Thanks....lauren

[lauren]

Friend Number 1 had no scan and had terrible mets. Friend Number 3 had a routine scan and had terrible mets. Friend Number 2, I can't tell what happened there. But what I can see is that it doesn't matter if you have scans or not - mets suck.

[lauren]

Seriously, don't you see what I mean? Your third friend had extensive mets that were detected on a scan. Having scans did not prevent her from having extensive mets. I really am not understanding the value of scans without symptoms.

[Kathy]

I understand your opinion, all we are saying is mets can be treated better in many cases if caught early. Its a personal thing. I personally like to know whats going on and sometimes things are going on without symptoms. I don't routinely have scans, but my oncs know, if I ask for them, they order them. Sometimes it just helps be to take a deep breath. Everyone is different, doesn't matter how you deal with it, just as long as we do. Kathy

[Lyn]

Have to agree with you there, mine is a classic, in June last year I complained of a lump in my neck, it didn't scan as anything, or ultra sound, but you could see it and feel it. While investigating the lump my thyroid was enlaraged so I was treated for thyroid disease, during the process I went into hear failure. This was in October, I was told the lump was from previous radiation in 2000, I disagreed because it had been getting bigger since June, I had a biopsy done under the lump because it was too thick and I ended up having radiation treatment for a lymph gland under the jugular vein that had mets, my lump could still be felt and it was getting bigger, I demanded a MRI, and guess what the biopsy proved it was mets again,but that was the only one, so I had my neck cremated again with radiation and just had my 8th dose of Her/taxol/carbo and the lump that took 12 months to enlarage is shrinking. I have been doing this since 1998 non stop and I can tell you BC does not descriminate, I was meant to have reached my use by date in the year 2000, all the while my tumour markers have been under the normal limit. Each day is a bonus and a day closer to a cure.

Hugs Lyn

[Leslie]

The thing is, if bone mets are caught early, you can be put on bone strengthners BEFORE you break your arm or it does severe damage. You can start treatment for liver damage BEFORE your lack of liver function affects the rest of your body. You can start treatment for your cancer and not have to deal with stabalizing the damage caused by mets first.

[Lolly]

I also think us Her2 gals need to have regular brain MRI's, mets or no mets, for the reasons stated by Janelle; caught early and small the treatment options for brain mets can be less harsh and quality of life remains high. We have several brain mets survivors who can attest to this!
Love, Lolly

[celina]

Yes, you're right...we can't believe how many symptom she ignored before her initial diag. But, I should clarify that based on the time line of her blurred vision, doc. suspects she had brain mets long before...before any symptoms.

[eleanor]

Everyone is different, but you asked the question.
The reason I have scans done every two months is because I had bone mets. And although my markers are normal and I have no symptoms (currently on herceptin alone after 1 yr tax/carbo) there is always the possiblity that the cancer cells will spread to the organs and that just ups the ante in this battle.
Prior to having been dx with mets, my dr only did annual scans and had tumor markers done every 3 mos. This was supposed to go on for 2-3 years, but unfortunately I only made it a year before bone mets were suspected and then confirmed.
If your not dealing with mets, then just report anything unusual to your dr.
el

[lauren]

I requested and am receiving Zometa to strengthen my bones anyway. As for liver function, the routine blood test is quite sensitive to liver problems. I am just saying.

[*_Ginger_*]

Ruth,
All information here is valuable. I was having the same question (why tests?) as my onc isn't prescribing any. With the responses here at least I am getting different viewpoints pro and con. I think it would be better to find met earlier on rather than later to avoid a more severe treatment.
Thanks for posting your thoughts and all the best to you.