Cured?

[mimi1952]

So at what point are we considered "cured?" I am 4 years post completing chemo, radiation and 3 years post herceptin and NED. Keep hearing if you make 3 year mark with HER2 positive, you are pretty much home-free since if it is going to recur, would have happened by now. Any other oncs telling you the same thing?

[BonnieR]

Last week I was told for the first time that I was considered "cured". I am 5 years out. I feel blessed. And stopped holding my breath!
Keep the faith.

[Lauriesh]

While most recurrences happen within the first couple of years, there is always a risk of it coming back.

I was diagnosed with liver mets after being NED for 5 years.



Laurie

[mimi1952]

Laurie,
So sorry to hear of your mets, hoping you are doing well and the vaccine is our new hope!

[suzan w]

I am going to se my oncologist this summer. She told me almost 2 years ago that I did not need to see her any more! I was ok with that last year at my 6 year mark. Now that I am nearing 7 years I am getting homesick for my onc.!!! I just want to hear her say those magic words!!! Will let you know what she says!

[mimi1952]

Wishing you the best, Suzan! I am sure you will be celebrating 7 years in June. This is such a roller coaster of feelings...

[Henny]

While I don't think you can really say "cured" since there is always the chance, however remote, that a couple cells survived the treatment and could return to nastiness, I am waving goodbye to cancer in the rear view mirror as I move on down the road

[Bunty]

I believe if you received adjuvant herceptin treatment after initial dx, you have a much better outlook. For those of us who were first dxd before this protocol, and only received Herceptin when secondaries presented, then stats will be different. I was NED for nearly 7 years, and then lung mets.
All the best Mimi!

[Rolepaul]

For Herceptin + patients, please have an MRI on the Brain and Spine after two to three years, and every three years after for three times. This is unfortunately a problem that is not well publisized as part of Herceptin treatment. If this looks good all four times, then you should be NED for Herceptin based issues for as long as you live.

[BonnieR]

Rolepaul, may I ask on what you base your recommendations? Where did you get that information?

[tricia keegan]

Rolepaul I was wondering that too???

I've read here in the past that 3-4 years can be a danger time for her2+ and if you pass that there's another around 7-8 years so as I'm coming up to seven years out I face it with some caution! I think I remember reading if you pass that you're home free and think it was Dr Slamon who said it and maybe Becky who posted it but could'nt find it when I looked??

[Rolepaul]

Please google Herceptin brain met and there have been multiple studies on the transition for 30% of the patients with herceptin ending up with brain or spine involvement. Herceptin does not go through the blood brain barrier. This has been known since the 2005-2006 time frame. Nina had brain involvement in Nov 2009 after a July 2005 initial diagnosis of the breast cancer. If there is more than 4 nodes involvement, than the risk is significantly higher. By the way, I am in the pharmaceutical industry and used to be part of a team that was making the monoclonal antibodies that make up Herceptin. I have pretty good contacts and do research at this level professionally.
Rolepaul

[nitewind]

I was feeling fairly confident till I read this thread.

[michka]

Turned stage IV, 4 years and 5 months after initial Dx.
I hesitated to post because I am a bad case. Most of us do not recur, go on with their lives and do not come on the board very much!
However, I agree that you should ask to be followed by your onc for more than 3 years. Michka

[Ellie F]

Thought Lani had published some research that suggested if you were 5 years plus from diagnosis of her 2 with clean MRI then your risk of brain mets was very small.Cant find the post but sure I read it .
Ellie

[NEDenise]

Hi All!
Here are Lani's instructions, copied from another thread, about how to find info about the likelihood of HER2 survivors developing brain mets.

"go to the yellow bar above and click on search.

put in Lani brain met (that should cover mets or metastasis or metastases in the search) I have provided info from at least a dozen articles over the years I would think

Otherwise be a DIY (do it yourselfer) and go to google and put in
Entrez Pub Med
once you get the right entry click on it and put
erbb2 brain metastasis into the search box

you will find hundreds if not thousands of articles"

I'm certainly not doubting anyone's sincerity...but if you're like me...you want to read the research for yourself...before getting all worked up, and worried.
I haven't read all the research. And, as you all know by now...I'm certainly no expert! But from what I've read so far...I'm encouraged. Of course...that's just my impression...I could be wrong.
Denise

[MJsHusband]

I think the answer to this depends on staging. I haven't read anything that says Stage IV is completely "curable". Has anyone? ~Greg

[BonnieR]

Nitewind, I am sorry this thread has caused you to lose some peace of mind. As Michka said, first of all most people who visit the boards are newcomers or those with recurrent issues. So we dont hear as much from people who have recovered and are without symptoms. Also, the information here is from many and varied sources and that needs to be considered before getting alarmed or discouraged. Personally, I am going to be happy with what I was told by a very well qualified oncologist who specializes in Survivorship. He wants to follow his patients for 10 years and if he considers me cured without need for any tests unless I show symptoms, that is good enough for me.
Keep the faith.

[SoCalGal]

One is considered "cured" when you die of something else. Sounds harsh but it is the view point of the medical community. There are all sorts of stats on cancer prognosis, survival, her2, XXX, etc., but the truth is it is an incurable disease. That said, many people are treated and live their whole lives without ever having a recurrence. Then there are the stories of people who have recurrences after x amount of years. In my opinion, live your life with confidence that you are "cured". It is a nicer way to live. The "act as if" theory.

As far as being followed by an oncologist...it is my experience that, once you are diagnosed, you will be followed closely for the rest of your life by your oncologist. How often varies by patient and dx, but the minimum is every 6 months. It's easy enough to get a check up and if you are going to have a recurrence it's better to find out via blood test/exam or however you are followed than to wait for symptoms to appear.

[nitewind]

I will see my oncologist one more time, in September. He said he's "cutting me loose" after that. No more tests or blood work, no more visits. I will be six years out.