Is it possible to be cured?

[Cathya]

I went to see my oncologist for my regular visit....up until this visit I had been seeing him every three months but this visit was after 6 months. He and another doctor sat with me for an hour explaining to me that I would not have to go back to the cancer clinic again. My GP would now arrange my mammograms and regular blood work but I would not need chest x-rays, etc. again. Having an aggressive disease they believed that if it was going to reoccur it would have by now and that they considered my risk of breast cancer to be that of any other person. I asked all sorts of questions the first being that I have heard of others having recurrences 12 and more years after diagnosis. They said that these were less aggressive cancers which grew more slowly. I am now asking all of you. Is this possible, is this true? I have been so happy since this discussion but.... Wouldn't it be wonderful ladies if we actually could consider ourselves disease free after 7-8 years of NED.

Cathy

[KDR]

Cathy,
I sure do think the disease can be stopped, with different means of achieving that status, and to varying degrees within the population.

One of my closest life friends had an almost exact diagnosis to yours, and very similar treatment, and has been disease and drug free for three years.

Note, too, that many of the members here have been in the NED mode for years, some no longer taking meds of any type.

Karen

[suzan w]

I love this concept!! I am nearing my 7 year cancerversary and will go to see my oncologist this June. She told me at my 5 year check-up basically the same thing that you just heard. I want to go see her this year to hear it again!!!

[Whonoze]

So glad you posted this. I am being told the same thing after being diagnosed Stage IV in January 2007 and being NED since finishing chemo while remaining on Herceptin. My first one told me it would come back and that I would have to remain on Herceptin for the rest of my life. My new one is telling me I'm probably cured and that I should go off Herceptin. a 180 degree difference!

[Mtngrl]

Whonoze,

Your news is music to my ears. When I was diagnosed my onc said we would be shooting for "permanent remission, normal lifespan." I have hardly dared believe that could be true (though of course I want it very much.)

Thank you for posting. And Cathya of course I'm also thrilled for you too.

[Lauriesh]

My dr told me the same thing at my five year check up. My cancer was er/pr- and I had not been on any treatment for 4 years and because it was such an agressive cancer, that there was less than 1% chance of it returning. He also told me that I wouldn't need to come see him anymore.

4 months later I was diagnosed with liver mets.
When I asked him how could the cancer that was so agressive sit in my body for 4 years and not grow , then all of a sudden start growing, he shrugged. no one knows.
I think while my situation is rare, it obviously happens.

Laurie

[Cathya]

Laurie;

I am so sorry to hear of your liver mets. My onc told me that it was herceptin that made all the difference for me and I also think being ER/PR+ helped a lot. Even at 5 years he told me that we must be cautious and we continued with testing and my seeing him regularly for the next 2+ years. This new report on the 10 breast cancer subsets and genetic testing should provide new and personalized treatments. I hope this happens quickly. As for myself, I doubt that I will ever be totally relaxed but after these years of constantly waiting for the next shoe to drop I do breath easier.

Cathy

[KDR]

Lauriesh,
I noticed you went to TVG in Seattle, and that the dates you were treated spanned October 2011-February 2012. What was the outcome?
Thanks,
Karen

[Lauriesh]

Hi Karen,

I was NED when I started the vaccine and I am still NED.

They said they would let me know sometime this spring what kind of immune response I had to the vaccine.

Laurie

[MJo]

Yes it is.

[Jackie07]

Believe...

Positive thinking, like physical exercise, can increase the release of endorphine...

[Lani]

I am not an oncologist, radiation therapist or oncologic surgeon just someone who thinks themselves well-read.

I am by nature one who likes evidence--like those from Missouri, the "show me" state.

Before considering oneself cured I would think a bone marrow test which failed to show any disseminated tumor cells would be in line.

Oncologists seem not to like to do them (in the US they are no longer trained as hematologists as well and so never did them often enough to get comfortable enough or good enough with the procedure) and repeat over and over that patients don't like them either--although they do not offer them to patients and although the seem happy to give patients chemotherapy which I would suppose patients "like"????????

Until a trial is done with long term NED Stage IVs testing their bone marrows at the time they stop perception( it seems since updating my operating system every time I type herceptin
the spell checker changes it to perception!!!!!) following them up thereafter, and seeing if DTC-free status and lack of recurrence thereafter correlate, we just won't know.

[Rich66]

in addition to Lani's suggestion of bone marrow test, it would be interesting to know whether tumor markers and/or circulating tumor cell tests would be of use in adjuvant scenario. I mean..the utility may be variable in gauging treatment in advanced cancers, but wouldn't presence of CTCs suggest presence of cancer?
Feels like another one of those common sense approaches that gets greeted with "not typically done", only to be "discovered" years later.

[Lani]

So far DTCs (bone marrow) have been found to be more indicative of residual disease capable of causing recurrence than CTCs

The technology for CTC isolation and testing is not yet reliable enough to be agreed upon (only one FDA approved test for isolation and it has problems as it only separates them out by use of magnetic beads against EPCAM among other problems)

Yes, of course the best opportunity would be to test prior to adjuvant treatment and after it to see if it worked. Again, DTCs so far are the most reliable and only the Germans seem to do the trials to follow their presence before and after adjuvant therapy.

A chart from a 6-10 year old study of DTCs in Stage Is and IIs showed 50% of those with her2+ DTCs were dead in 5 yrs, 90% in 10years (small number of patients s= and before herceptin used)

Doesn't that seem like something important to look for --and look for again after the Herceptin treatment/herceptin+ chemo treatment/ herceptin+ other targeted agent treatment to see if the bone marrow clears and remains clear?

If you don't look, how will you ever know?

Off my soapbox for now.

[Rich66]

DTCs (bone marrow) have been found to be more indicative of residual disease capable of causing recurrence than CTCs

You mean they have studied both tests in adjuvant patients and tracked the results?

[Lani]

Yes, in Germany

[Rich66]

Was that with cellsearch/veridex (FDA approved)?

[Lani]

original articles I am discussion by Pantel and others were before the AdnaTest, so utilized Veridex for detecting CTCs. DTC detection, phenotyping done by another technique altogether

[tricia keegan]

I am a very positive person but don't like to use the word cured and nor does my Onc use it, we 're both aware its early days for people like me diagnosed early stage and had herceptin and only time will tell how long we remain disease free but of course I'd love to think its forever:)

[cheery]

I think the word "cure" means very different things for early stage and Stage IV. I've read that in Stage IV, a person will be considered cured if she/he dies of something else other than BC.

I'm Stage IV from the get-go in 2008 and have been NED for 3 years. 3 oncologists think I've been "cured" but I'd rather think I'm in remission until we get more definite confirmation that I've been cleared of BC for good.

[PinkGirl]

Hi Cathya
I'm in a similar situation ... my onc sent me on my way last year ... I also live in Ontario.

There are people who go through treatment and then never recur. So I guess they are cured. Problem is, right now, no one knows who will recur and who won't.

[allielala]

Hi l am her+. Diagnosed injuly 2009. Diagnosed with liver mets in march 2012. In Feb my oncologist said l was doing well and see you in a year despite me mentioning l had seen my gp regularly complaining of right side muscle pain and had ultrasounds etc. The tests had revealed two spots. But were dismissed and not passed on to my oncologist. I of course questioned this. Is it cancer Doctor? My Gp assured me it would be highly unlikely and to stay intune with my body. In march after further tests it revealed it was 6cm's. Shock. Having adromycin weekly now until mid july. I had 3girls under 3 last time. My youngst was 4months. Now atleast they are more independant. My liver condition is improving and my appetite. My head oncologist remains optermistic but another told me 18mths - 3yrs if lucky. l have organised second opinons etc which should take place very soon. My girls were distressed about my hair falling out but now are doing fine.
Plodding on just wanting to be a ma at 37yrs. xo

[Cathya]

Allielala;

I am so sorry and surprised to hear this. I was seen every 3 months by my oncologist for 6 years and only in the later years every 6 months. He was very aggressive in my treatment and in testing any symptoms I had during this period but luckily for me no mets as far. I am so sad that you are going through this at such a young age with such little children to care for and worry for as well. Do search this site for others with similar pathology (ie. er/pr status, etc.) to see what treatments they are following. It was only after I came to this site and met these strong women that I learned to be my own advocate and I hope you have the same results. My best wishes for your long term health.

Also, thank you Lani for posting your information. I agree wholeheartedly with you that I want the proof.....doubt I'll get it but it sure would be great. I also agree that the word "cure" makes me uncomfortable. I just think NED but would love to think it's forever too.

Cathy

[Cal-Gal]

Cathya-
I dont know about this:
This new report on the 10 breast cancer subsets and genetic testing should provide new and personalized treatments.

Can you provide additional details?

I know about ER/PR HER2, but didn't know there were 10?

[Cathya]

Cal-Gal;

Lani posted about this. Here is the link....

http://her2support.org/vbulletin/showthread.php?t=54070

Cathy

[evergreen]

I am a newcomer to this discussion group. Please tell me, what does "NED" mean?

[Mtngrl]

"No Evidence of Disease."

Sounds like you're doing all you can. Loving your dear ones, loving life--good for you.

[Mtngrl]

Allielala--

Most Stage IV people with HER-2 stay on Herceptin indefinitely (until it stops working or until somebody decides maybe they're cured.) Of course it's toxic with Adriamycin.

If I were you I'd get a second opinion. Go to a bigger cancer treatment center if you can.

[CoolBreeze]

Of course there is a cure to breast cancer. Otherwise, everybody would die from it, and that is far from the truth.

The only problem is because cancer can be so indolent, coming back many years later, we don't know who is cured and who isn't. That's why we have the term NED.

There are clues. ER+ HER- tumors have the five year "magic number" where their relapse rates drop. For HER2+, or Triple Negative, because ours is more aggressive, it's 3 years and then our relapse odds drop.

But cancer is sneaky and you just never know if you are cured until you die of something else, as they say. Because, odds are only that and sometimes it will return. After many years it's incredibly rare - but it CAN happen.

I think how you look at it is part of your personality. Some people are very cautious and are not going to declare themselves cured, even 20 years past cancer. Some people might hit that magic number, give themselves a party and call it a day and themselves cured. Neither attitude or way of dealing with it is right or wrong; it's just the way people manage within their personalities.

Unless you are Stage IV, your cancer treatment will end and eventually you won't be treated by an oncologist. After a time, even your insurance rates can go back to normal! That is a good thing and should be celebrated!

It is only those of us who are Stage IV who are in treatment forever.

Whether you want to look at yourself as cured or whether you want to look at yourself as NED, either one is a fantastic thing and I hope you can enjoy it, and I hope you have a long, happy, cancer-free life.

[allielala]

Thankyou Cathya for your caring response. l am determined to complete all my treatments and continue on with my life with my beautiful family. l have surrended the questioning and wondering in my mind that could give no answers. l found myself being completely exhausted by my mind. l thought if l end up living an average life etc what a waste of thinking energy. What will be will be! l have begun loving thy liver with a nutururing way, almost like my baby. l try to send alot of love and kindness because l do think this humbles me and makes me feel good inside. l do believe in NED and CURE. There are people out there that may not write there positive stories sometimes simply because they are too busy living!! x lala x

[pibikay]

I think one can be cured.My sis-in-law wanted us to see a youtube progrmme of a person cured of cancer