SO DAMN MAD!!!

How terrible Leanne...to have been through all this...even though if it's not mets that is great news.  I have always sat on the fence so to say and take the  docs and oncs with a grain of salt.  I can't understand how they can all have such different opinions.

I would definitely insist on all the tests to confirm that it is not mets.

Good luck and take care 

Oh Leanne....what a dreadful rollercoaster you have been on. Your emotions must be all over the place.I really,really hope they are right and you can believe that it is not mets - but I would seek a second opinion, if only to be sure in your own mind that this is the case.

If you can't get a second opinion, then you need to have a lengthy conversation with the onc team as to WHY they thought it was mets originally and WHY they are so sure it is not now.And WHY can't you continue with herceptin? It is to prevent progression of disease, not just to treat it.

Lots of questions to ask.

You need definitive answers.

Sam

If it was me I'd get a 2nd and maybe 3rd opinion while feeling cautiously optimistic. Cancer is enough of a roller coaster without not knowing if you're dealing with mets after a whole year of treatment.

A few weeks ago there was a story on our local news and the reporter talked about "a woman's worst nightmare". She was misdiagnosed with breast cancer and had an unnecessary mastectomy. Apparently they gave her the results of another woman's mammogram. They discovered this after the surgery, she didn't have chemo or radiation. The woman was suing and said her life was ruined. How ironic, I thought, because what happened to her is probably most breast cancer patients' greatest wish-- that the cancer was not.

I definitely understand being angry, but try not to let that overshadow the potentially good news. If it turns out you are and were cancer free, the herceptin probably gave you an extra boost so that you'll stay that way!

Dear Leanne-

Wow...what a mess!  I would be beyond mad.  You have every right to be angry, and then some.  The hard part is to find a focus for your anger that is productive instead of destructive.  I didn't have anywhere near the type of situation you are gong through and dealing with the anger was still one of my biggest obstacles.  I know this will make me sound like some kind of a Pollyanna, but what really helped me was finding someone in worse shape than myself and helping them....simple things like making a meal or crocheting some hats for my chemo center helped me to quit focusing on my problems and the anger kind of melted away.  It still comes back now and again, but for the most part I have control again.  I also think time is a factor.  You still have indecision and not enough information you trust, it must me awful!

As far as the clinical end of things....do they have a tumor board at the hospital you are being treated at?  I'm not sure if things are done the same way there, but hospitals here have a process where periodically the whole oncology department, and many times doctors form other departments will collectively review difficult cases.  The goal is to work together to find a diagnosis or treatment plan.  It is kind of like a super-second opinion because you have lots of docs reviewing together.  I would ask for your case to be reviewed by the tumor board and then also ask for a records review at a totally different hospital.  A records review is like a second opinion without them seeing you, just your records.  The good thing about it is you don't have to pick a hospital near you...go for one that has a big breast health clinic or a big teaching hospital with a good reputation.  I don't know anything about hospitals there, but I bet you could check around.  I would ask for both a radiologist and an oncologist review all you tests.

I can not even imagine how stressed this must be making you.  Hang in there.  Let us know what you decide and how you are doing.  Hugs to you and your whole family.

Deb C

Wow... your story is incredible.

I would get another opinion as some have  said here. I wouldn't trust those doctors either after being treated the way you have.

Wendy A

Hi, Leanne. 

I don't think we've met.  Your rage is absolutely justifiable.  I can't believe what you & your family have been put through.  It's also frustrating when you see family and friends moving on from your cancer, when you can't.  Kind of like you're left holding the bag........alone.  Everyone expects you to feel euphoric, but how can you with all this uncertainty hanging over you.  That, in itself, is enough to send anyone over the edge on a daily basis.  Perfectly natural to want to lash out.

Is the inability to do a biopsy on this a permanent condition? 

I hope something will happen, some new test, SOMETHING that will give you the peace of mind you need...and deserve.  

Take care~

Patrice (gsg) 

Hey hon, I remember you.

Cancer can make anyone mad, if not bitter. I have had some issues myself with another situation, but I am sure part of it is my anger of cancer manifesting itself.

Besides getting a second opinion, I would go see a counselor. You have been through a war and you have PTSD. It is normal and common, you need help getting through it. You can't do it on your own anymore.

I went to a counselor because I didn't like who I have become. I didn't like myself as a mother.

take the first step. I can believe how long your hair is btw.

Janis 

Leanne,

I'm upset for you and what these doctors have put you through this last year.  I'm glad you're considering counselling and are getting another opinion.  You need to be able to trust your team and I don't see how that could be possible.

If you can give yourself a "time out" when you feel like screaming at the kids, do it.  I'm something of a screamer myself at times and I hate how it sounds - I try to remove myself before it gets that far.

Don't beat yourself up - save  that for the doctors!  I hope they finally got their heads out and are right, you're NED.  They took a year, try not to give them too much more.

Kari

Hi Leannem:  I understand your anger. I was misdiagnosed for almost two years and that was so frustrating so everytime I go for my chemo or look at my scar I fume because it could have all been avoided. I too have tomours in the liver and they won't biopsy because its really a bad area the liver moves so much and its really messy so they say.  So on Dec 6 th I go for my second MRI to see if they are smaller or gone. It's so hard to wait and not know for sure. I was so angry my sister couldn't stand it anymore and made my onco prescribe lorazepam to stop my bad moods. My sister always makes me take my (Grumpy pills) when she's here. But the anger is terrible I yell at my broom my vaacuum, a dirty dish, the garbage bag that won't tie right and sometimes at my poor little cats, thank God my boys are adults and on their own.  Your husband needs to pick up some of the slack with the kids and get any friends to help right now until your anger subsides.  I'm going to sue the Doctors that caused this because when I first noticed the lump it was small and the Doctors said it was nothing even after it grew to a ridiculous size they even put me on antidepressants because I felt so bad I insisted on bloodwork and it to came back bad and of course they said it was just some unknown infection. Well they were wrong to the tune of my life. That causes me anger. 

If I were you I'd get another opinion I saw three different doctors andthey were all wrong it took my back doctor to feel it once and she knew it was bad in two weeks I was in surgury.  So once I get my law suit going I know it will help my anger I also think the chemo itself is causing alot of the anger and living with the fear of losing everything is hard. Maybe try a counsellor it can't be easy on you you get angry and then you have to deal with the guilt of being angry I feel so bad for you and completely understand it at the same time. Good luck and I really hope you get some relief.