want to refuse all tests/monitoring

1. My doctor tests only if there are symptoms

Your doctor may decide that he can only give you medications if you are being monitored. I get that its YOUR life but even if you dont go through the tests you'll still panic every time you have a pain thinking its cancer, etc etc. You can always refuse treatment IF something comes up but the three years I was "blissfully ignorant" I had a cancer growing inside me and spreading to 7 of my lymph nodes. I'd hate for you to turn out to be one of these people the doctors talk about in terms of someone who could have been saved if only they had caught it in time.

I found a great social worker who helped me a little bit with the PTSD maybe one would be able to help you too.

Minxie-

I totally understand where you are coming from and I have decided to do the same thing. No tests or monitoring for me either. I am done. I just really don't want to know. I am eating healthy and doing everything I can to keep cancer away from me but if it returns, I want to be the last to know. I just can't live my life doing test after test. I figure that if they look hard enough for something, they will find it.

Minxie, my onc only tests if there are symptoms and i am fine with that.  I don't want my life run by markers and stuff but that's just me..  

 Sweetie, be really kind to yourself and put yourself first.  I just reread that you are only a week or so off the fentanyl--that's a very heavy drug so do take care of yourself.  Are you in any kind of counseling or in a breast cancer support group?  Might be helpful.  Please check in and let us know how you are doing.

Lizzie 

Hi Minxie.  I think we can all understand where you are coming from and, at least for me, it depends on the day if I feel this way or not.  I can tell you that I have gone through counseling almost since the time I was diagnosed and it does help to make an appointment when I feel the worries and the anger creep in.  Post traumatic stress is real and it is so difficult to deal with when active treatment ends especially if you are triple neg.  I am sure the posters on the triple neg forum will have lots of love to give you on that.  I just wanted you to know that check ups are not "all or nothing" and you can find that happy medium between you and your onc.  My onc is young and great and told me that he does not do tumor markers at all.  He said if I insist he will do them but does not feel that they are reliable enough for all of the anxiety they produce.  I am good with that but I am probably going to insist on a scan here or there but that is just me.  It sounds like a lot of your medical decisions had to be changed quickly without you really getting a a chance to get your mind around them and be comfortable.  My big surprise came when they found invasive cancer in the other breast as well but I had already decided that I wanted a BMX so other than feeling like I was on a speeding, out of control cancer train it did not change my treatment decisions.  I had already made peace with the surgery and it sounds like you never got that chance.  I am sorry for all that you have been through and I just have to believe that better days are ahead.  Wonderful days with your kids where cancer was just a blip on your life radar.  We are all freaked out and scared and if you want to close the door on it no one would blame you but try to breathe and give it day by day.  You may find that each time you get the "all clear' you stop fearing the labcoats more and more.  These forums have been great support to me and sometimes I just come and "lurk" and read and feel better or learn something.  I don't always have the urge to post but I always learn.  Good luck with everything and be gentle with yourself, mentally and physically...you have been through a lot and need time to heal.   

Minxie, I suggest you discuss with your onc the whole blood tests and scans thing. A lot of docs only order these test if there are symptoms so it's not unreasonable to have no tests/scans.

Also, betweent the cancer, surgery pain, and drug withdrawal you've really been through A LOT. PTSD is not an unusual thing to happen in that situation, so you might want to get help for the emotional pain also.

I wish you all the best.

(((((((((HUGS)))))))))))))

Leah

If you have severe anxiety it seems reasonable to refuse lab work and routine screening check ups.  You could decide later to go in if you have some new symptom that won't go away or whatever. Doctors offer this stuff to us because it is likely to help a certain percentage of patients and most of us don't find it agonizing to go in on a regular basis.  

At the risk of sounding condescending, I do feel the need to correct your statement, "...once it has spread it's pretty much over and there is nothing they can do..."  I take issue with that.  I have extensive cancer and there is a lot that can be done.  Many stage 4 gals live a long time and have very full lives.

Minxie, I can feel your fear, but I also agree with Nancy - and yes I am ER+ too. But keeping ourselves open to others, and learning from each other always helps. I hope you can find some triple neg sister here, but know that you can keep posting to all of us with stage IV. We understand the fear. And take it one day at a time. Dont be hard on yourself. You sound like a strong independent woman. And that strength is what you need for longevity. good luck!

it sounds like your doctor is really nice.. just what you need.

hang in there.  My cancer is very aggressive.. (i had progression while on super duper chemo.. but the last one worked well and I seem to be doing well on Femara... so.) 

best of luck to you.

They use the diagnosis of PTSD for rape victims and people who have been in the war but I firmly believe it also applies to cancer survivors.  I dont care how medically advanced we are, cancer is still the scariest 6 letter word on the planet and most of us have had experiences we dont ever want to repeat. 

I wanted to answer your question about PTSD. I also struggled with this the first year after treatment. I would cry all the way to the appointment, and sometimes actually had to leave before seeing the doc because I was so nuts. I still can't tolerate an automatic blood pressure cuff.

There is a type of therapy called cognitive behavioral therapy that your counsellor should be able to teach you, or perhaps they can refer you to someone who can. It is a way of paying attention to stressful situations that allows you to head off the craziness before you get out of control. It's really a structured technique for self-caring and self-healing.

And it worked wonders. I made it through my 6 month appointment last week without snarling at anyone, or weeping uncontrollably.

Hope this helps

Since you will be getting Zometa, do they need to test for things like liver function, or kidneys, etc.?  I see my primary every six months and have lab work done because I'm on different meds.  My onc said she didn't need to do them because my primary was doing what she would do (plus more).  However, by accident we did find a single met to my spine.  Thus, the need to have onc checking blood work and doing scans.  This is something I NEVER wanted done...NEVER.  She does not do "routine" scans and I was happy.  The reason she did the CT and bone scan was I was complaining about my LE arm.  She actually was looking for something else other than bone mets.  This was found by accident...no symptoms. 

I do take Xanax.  I can tell you that it really helps when I see her and have to have scans (prayer also helps).

It IS your body and you must ultimately make the decision.  I can tell you that after I finished my initial treatments (chemo) I was a happy camper and if I thought I was going to have to have scans every so often I would have been a basket case.  So, I can understand how you feel.  Also, never had tumor markers until she decided to do scans.  One was only a couple of points high and the other one was within the normal range.  Haven't had another one since.  She may do one next time, but as others have said, they'e not that reliable.

Good luck and hang in there.

Shirley

I may kick myself later for saying this but I am so far actually glad I am being watched.  My Onco insisted I have a colonoscopy and they found a type of Polyp that could have become another major problem...instead it was taken care of while I was in "La La Land" and luckily found to be benign. 

minxie,

I have just begun my chemo, so my experience is very limited. Like yourself though I have 4 young children I couldn't bear to leave.  At this point I feel so blessed that my cancer was caught relatively early and there is something that can be done. I am willing to do whatever it takes to be there for them and to enjoy every moment of their futures.  I have no idea what lies ahead for me, but I am thinking only positive thoughts and am inspired by the stories of those who have lived long lives as a cancer survivor.  I plan a future of days spent at an arena, a soccer field, a baseball diamond....cheering on my kids and loving every moment of it.