Re: No tests scheduled after chemo is finished.
 

Debbie is right.

I thought the way you did after my treatment but the more I've learned, the more I realized I was wrong.

First, those tests don't find metastatic cancer until it is about symptomatic anyway. They find it by the cm, not the cell. Right after treatment, you likely don't have findable cancer, but if you do (I did) it will be found.

And second, once you have found it, your life is not any longer than when you didn't find it. Just unhappier. You start treatment that never ends until the day you die. And, evidence shows that finding it before it is symptomatic does not give you any bit of a longer life. Like Debbie said, we are so used to early detection we think it applies to mets too...but it doesn't. A few months or a year until your symptoms show make zero difference in your lifespan. Catching mets early doesn't mean you live longer. It means you are in treatment longer.

So, Mary Jo, you will worried for a while. Very worried for a year probably, then relax a bit, then after 3 years you will start to realize you may have beaten it, after five years even more confidence....but it'll always be in the back of your mind. That's the price you'll pay. Don't make it a higher price than it has to be.

I think the trick for you will be not worrying about every little ache and pain and remembering that cancer patients can have simple pains too. Try to put yourself in the mindset of a survivor: you HAD cancer, (not have), stop reading cancer blogs and forums, stop talking about it, stop living it. It will take some time to do that but you just have to reassure yourself that you did what could be done, you have the best doctors and most people manage to put it behind them.

Was what you did worth it, you ask? Make it be. Imagine what being a survivor will look like to you, and try and make that happen. Think of it as a renewed chance to start your life. You had a horrible scare, a terrible year and now it's over. The after affects will linger on but they too, will dissipate and how quickly is up to you. We can control our minds and our reactions. Five years from now this will be a terrible memory. 10 years from now it'll be part of the flow of life. In 20 years, you'll be too happy to think of it.

And if the worst happens? You'll find it. Mets doesn't keep itself a secret.

Let me tell you that I had decided to do all those things before I was finished with treatment. I had a very popular blog that I was going to shut off, I was not going to talk cancer anymore, was going to turn my back to it. I had dates set to do different things. I was determined not to live my life as a cancer patient/survivor whatever. I was going to put it behind me. And, sadly, I am in the minority that got mets, and quickly too.

But I have to tell you that those four months after treatment ended and before I found my mets were wonderful. I had hopes and dreams and a future. I didn't have to go to the doctor every week! I didn't have to take tons of medicine, feel pain and sickness, watch the sad eyes of my child as he sees me decline. I got to think I might see marriages and grandchildren and grow old with my husband, watch him golf, watch my wrinkled skin get tan.

Don't take that away from yourself before you have to.

Re: No tests scheduled after chemo is finished.
 

Please add my support to everyone who has recently finished chemo and or other treatments and now wonders why there are no scans. I have not taken the time to read all of the carefully written posts. I will share that I have been lucky not to have experienced any recurrences. My oncologist, who I really trust, does not recommend scans unless I alert him to something unusual that we both feel needs to be checked out. I get a through exam and blood work every 4 months. I just now am switching to once ever 6 months. My doctor says there are too many "false positives." This is where a scan shows "something." Often that something is really nothing and there is anxiety and maybe some invasive surgery. All this being said, I was quite nervous for about the first 1-3 years after finishing treatment. I have been NED for almost 7 years and have not had one scan since the end of my Herceptin. Great that you are asking questions and making sure you get the best treatment and follow up available. I just did not want you to think that your doctors were being derelict (sp) by not providing scans. Just my opinion and my experience. Wishing everyone well!

Re: No tests scheduled after chemo is finished.
 

Thank you to all the women who have come before us, both NED and fighting the battle. You teach us and help us DAILY.

I do worry for many reasons, some of them because of being here and gaining an understanding of being HER2+. If it wasn't here, it would be somewhere else, because I have access to pubmed because of the my field of work.

I know I come here when I'm super tired, and because I like knowing why I feel crappy. Why my nose is bleeding all the time, etc. I have to be told to go home, told to leave work because over 25% are visibly sick and they can't afford me to be sick. I truly don't like to see myself as a cancer patient. I want to go for a long run, cook an amazing meal, drink WAY too much, hike at sunset, etc. I'm not a sit on my butt person. So it's hard to digest the responses of those I truly respect when they say that when I'm done with all this crap, wait until there is something really bad. Just not my nature. I can't imagine it was yours either, but here you are, tell it like it is.

I hope that I don't have symptoms and I'm done for a long time. Unless they come up with another screening technique, I'm pretty satisfied with being happy and moving on as long as I can.

Thank you.

Re: No tests scheduled after chemo is finished.
 

Cool Breeze, that is one of the most profound things I have ever read on this board. Thank you so very much for sharing it You are amazing
Keep the faith

Re: No tests scheduled after chemo is finished.
 

CB - your post gave me chills. Thank you for putting yourself out "there" for all of us.

Janis

Re: No tests scheduled after chemo is finished.
 

After finishing my year of herceptin as stage 3C, my oncologist agreed to give me a PET for my peace of mind - she was convinced I had nothing to worry about. Imagine her shock when a 9cm turned up in my liver. Glad I had the scan!

- Penny

Re: No tests scheduled after chemo is finished.
 

Re: No tests scheduled after chemo is finished.
 

Coolbreeze, hit the nail on the head. Thank you for posting that - it helped me as well. "Don't make it more than it has to be" :) Best.

Re: No tests scheduled after chemo is finished.
 

Thank u Debbie and Coolbreeze for the wonder words of wisdom. I was actually doing well until recently when I hit a gray wall. My friends daughter was dx'd with Her2 breast cancer, she is 35 and has a 14 month old and a 4 yr old. As my friend keeps me updated it has been alot of been there done that and reliving my experience again. My heart is broken, it's as if she is my daughter so as I try to encourage them and be strong I am also going back to the beginning of my journey as well and I think that is why I am having some fear again.

I do not want to post to much about her yet I want to make sure she is ok with it. Stupid cancer but your words put me back on track and I will deal with that matter when and if it happens. Coolbreeze, just an amazing post, thank you. Keep my friends daughter in your prayers please,she has an extremely large tumor that was blown off by her ob gyn a year ago. U all know where I am going with this.

Re: No tests scheduled after chemo is finished.
 

Hi,

I did have a brain and Pet scan both came back normal. It gave a sense of comfort knowing I was ok. Of course no one knows why a stage 1 will metastasize or why a stage 3 never goes any further. It's a crap shoot, luck of the draw, but Hope should never be taken away. I barely remember the person I was BC (before cancer) but stats can always change. My personal position will remain the same. Pet and brain scans 6 mo. I need to know what is going on..playing with a blind fold is not my idea of playing fair.

Re: No tests scheduled after chemo is finished.
 

Dear MSmnuf,

Do you live in the States?

I never heard of not being monitored after bc. It's important to find the RIGHT oncologist someone who will listen to you and your concerns. Can you switch to another doctor?

How would this doctor feel if it was her/his mom, wife, sister? He won't be telling them that, you can bet on it!

Take care. Fight for your rights, you should be heard!

Adriana

Re: No tests scheduled after chemo is finished.
 

hi all, my first post. i'm 45 andwas dx'd with stage 4 her2+ jan `12. liver and bone mets along with 2 small brain mets.
5 months carboplatin taxol herceptin xgeva
then 6 small brain mets
end carboplatin taxol, keep herceptin add tykerb xeloda...clean for 4 mo
feb '13 5 new brain mets different spots from the old ones so 15 rounds WBR. still on herceptin and tykerb. got rid of the xeloda, clean again.
that all said, i get scanned every 3-4 months, brain MRI, body PET and echo. insurance denies it, oncologist intervenes and so far they pay.

scans are good.......
robin