Onc totally depressed me today!!!

[nikki uk]

Hi girls (and guys)

Went to visit with my oncologist today expecting to find out what arm of the Hera trial i will be on for my stage 2 BC and he made a comment which has totally paralyzed me with fear and i feel as though i may as well just hit the vodka and diazapam now rather than sit here waiting for what he termed the "inevitable". I asked him what else i could do appart from put myself forward for the Hera trial (had 7/14 nodes positive) and he said "Nikki you have done everything with the chemo and rads but your cancer is still likley to return"......OH MY GOD! im so scared now, i was just starting to feel positive and hopefully have some normal time without cancer and he drops a bombshell like that on me, ok i kind of new that to be the case but him confirming it has woooshed all my fears back up again and i feel really despondant now.
How many women who are HER+++ and have had such signifiant nodal involvement have really survived this?
Do any survive who dont get Herceptin as an adjuvant therapy? (just asking incase i dont get the Herceptin arm of the trial)
Sorry to be such a doom and gloom party pooper but im so sad for my son who is 5 years old and crying that mummy may die, this is soooooo unfair.
Love to all
Nikki x x x

[Carlye]

Hi Nikki,
Just remember its only statistics. I truely beleive we can't really predict whether it will return or not. We just have to keep a positive mind and enjoy every minute and keep fighting until we find that cure.

[Sheila]

Nikki
First of all, think positive...it makes a big difference. Non of us know if it will return...some with many positive nodes live without recurrence for many years, some never get a recurrence...I was a statistic who shouldn't have had a recurrence, small tumor, neg nodes, mastectomy...but 1 1/2 years later it is back...although fear can be overwhelming, remember, God never gives you more than you can handle...although I feel he has pushed the limits with me a few times...can you just get the Herceptin off protocol...maybe through another Onc???? You are in my thoughts and prayers that you will never recurr and you get the Herceptin you need.
Hugs
Sheila

[Kathy]

Nikki,
I had 12 of 24 nodes involved 20 years ago--I had 19 healthy years before relapsing. I've been stable since Jan. 03 with Herceptin and Arimidex. Be encouraged.

[Ron]

Kathy,

That is wonderful news and very encouraging. I believe there are many more people like you than we know. Unfortunatly for the newly diagnosed not too many of long term survivor stories are posted. Sadly, most of the folks who look for sites like this are people who are currently engaged in the battle.

I am sorry you have a relapse, but I am so happy to hear your story, It is encouraging.

God Bless You,
ron

[Patty D]

Baloney to statatistics etc- I was node neg when origianally dx back in 1994- had 9 years cancer free and it came back to my lungs Jan 2003- I went on chemo- blasted it to bits, went on herceptin since I was now Stage IV HER++. It has worked well - does not work in preventing brain mets and I was dx with that last Aug- I had WBR-it obliterated 3 of 6 tumors and now I am going to be scheduled for the Cyberknife procedure to hopefully get rid of the 3 remaining tumors which are very small. I am excited- there is always hope and options and more so everyday.So please dont give up- we are all here for you and our thoughts and prayers. Keep us posted.

[Ron]

Nikki,

“HANG TOUGH GIRL� Do not let the doctor’s pessimism dampen your spirits. He does not know how tough you can be. Forget about the people who say negative things and remember that you too can be a long term survivor! Get actively involved in your treatments, and be sure the doctor knows that you intend to be actively involved.

The only thing the doc knows is the technical stuff about your situation and you are learning about that yourself. He does not know about your resolve to live to see your grand children!

It is okay to question God, it is okay to be mad at God, it is okay to say “Why me God� but in the end, remember that God loves you more than you can imagine!! We often blame God for the works of the devil.

Remember, I am still your cheerleader. I know you will win! HANG TOUGH……

God Bless You,
ron

[Carlye]

Hi Nikki,
Just remember its only statistics. I truely beleive we can't really predict whether it will return or not. We just have to keep a positive mind and enjoy every minute and keep fighting until we find that cure.

[Staci]

Hang in there. I am the mother of a 6 year old and no exactly how you feel. No one can predict what will happen with you. We are all different. I only had one lymph node involved and had mets. diagnosed 1 1/2 years later. I just keep on doing what has to be done. Take it one day at a time and be optimistic. Enjoy each day for what it is, a gift from God. Every day takes us one day closer to a new drug, new therapy, new procedure, or even a cure. I had RFA and a stem cell transplant done. Neither of these were available when I was orignally diagnosed. Stay strong.

[Paul]

Dear Nikki,

Please forgive me for this comment but your oncologist needs a bit of help with his "people skills." Stated in U.S. vernacular, he has the personality of a "STOP" sign. As a person who has done a bit of research in the HER-2 breast cancer area, I can assure you that nothing, absolutely nothing, is "inevitable." Your excellent question of "can I do more" is the right approach. Keep asking that question!

A few thoughts on the positive --

1. Yes, node positive, HER-2 positive breast cancer patients do survive. You may want to take a little time to review the survival stories of a few inspirational women like Christine Druther (website founder), Ginger Empey, and Barbara Bradfield. Their stories are posted on the website. It appears that these women also failed to understand the meaning of the word "inevitable." Also note that each woman is a text-book case in the lesson of "persistence."

2. Your thought to enter the HERA trial is excellent. If for any reason you do not obtain Herceptin in that trial, there are U.S. HER-2 vaccine programs potentially available to you.

3. Even if your "worst case" scenario of "no adjuvant herceptin" comes true, Herceptin would be available to you if you have a recurrence. For many women (at least half and likely many more if the historic stats were based on FISH HER-2 status testing alone), herceptin is used to control the disease for many years.

4. Assuming Herceptin is not effective, drugs such as GS572017 and APC8024 are potentially available now, and drugs such as Omnitarg may be available in the near future. Keep in mind that most of the targeted therapeutic drugs being developed in the U.S. breast cancer area are aimed at HER-2. If your breast cancer is estrogen positive by chance, that's a plus as well from a drug perspective (e.g., tamoxifen, arimidex, femara, aromasin, and faslodex).

5. In "Silicon Valley" California, the computer techs refer to a concept known as "Moore's Law." Developed in 1965, the concept theorized that computer chip speed would grow expotentially for the foreseeable future. In the end, Moore was correct, because the speed of a computer chip doubles every 2 to 3 years. Based on my limited research, it will not be long until Moore's Law applies in the biocellular science area. We are fast approaching the time when medical statistics that are greater than five years old will be considered obsolete. That is, by time a doctor wants to see statistical results on a particular drug, a newer and better drug will replace the one being considered. This hope is fast becoming reality.

Sorry for the long post, but with respect to your doctor's concept of "inevitable" -- I would set it aside for now and take it as a very bad description of the "state of play" in the area of HER-2 positive breast cancer. Just think how silly your doctor is going to look in eleven years when your then-teenager son is asking YOU for the keys to car.

On a lighter side, tell your doctor that UCLA recently discovered that vodka and diazapam is synergistic with herceptin. Hang in there Nikki. You have a lot to live for, and remember, nothing in the area of HER-2 breast cancer is "inevitable."

Warmest regards,

Paul

[Lauren]

Bravo, Paul, and I would like to add that MY onc says the exact opposite. She says that a her2neu diagnosis is FAVORABLE to some other breast cancer diagnoses...for example, a her2 negative hormone negative cancer is worse than a her2positive cancer, regardless of hormone status because there is HERCEPTIN! And as Paul says, there are a slew of other drugs in the works.

I freaked out and emailed her about this just this week because of Lisa in Ohio, and she was all, CALM DOWN...a recurrance is NOT inevitable.

Lauren

[Lolly]

Nikki,
Bob Dylan once told Sinnead O'Conner, after she had been booed off the stage because of a controversial political act she'd performed,

"Don't let the #%*!!!%'s get you down!"

You have to believe in yourself, and don't let anyone get to you. When someone you trust, ie your doctor of all people, says something so incredibly negative, it's hard NOT to let it get to you, but you have to find a way to rise above that type of programming. My husband has a great tool which he gave me once when I was struggling, which is, "Change the tape!" So when I need to erase a negative thought or image from my mind, I mentally picture myself removing a tape from my mind's "machine" and replacing it with something more to my liking. This imagery will also work with newer technology, just update it accordingly , as in "Change the DVD!"

[Kitty]

Nikki,

Time to take a deep breath and slow down. First of all I was diagnosed in 6/02 with er/pr-, her2+++ bc, 2 tumors each about 1.2 cm, 7 cm of DCIS and 15 of 19 positive nodes. I entered the clinical trial to get herceptin with AC&T and of course was not selected to get the herceptin. 4 rounds of AC, 4 rounds of taxol, mastectomy and 28 days of radiation was my treatment. I was fine until 10/03 when we discover mets in my liver, largest being 6.8 cm. I did not freak out because I knew that I would now get herceptin plus chemo and I had faith it would work. I am very happy to tell you that after weekly taxol/carboplatin/herceptin treatments I have a tiny spot, possibly scar tissue remaining and I am doing well. I feel great and am in no pain and outside of losing my hair, I had have no problems (quite frankly it is hard to believe I was stage iv). No one can predict if and when it will return, but if it does you will have herceptin. It is a wonderful drug. If that doesn't work there are others out there. I want you to do two things: 1) Don't spend all your time worrying about things you cannot control, and 2) Look at the possibility of a recurrence more like a chronic illness such as diabetes and the herceptin is like insulin. Diabetes must be controlled or it will result in an unfavorable outcome; cancer can be the same way. There are lots of people who are stage iv who are brought into remission and live quite long and healthy lives. You cannot control the cancer, but you can control whether you will allow it to interfere with your life. Hope this helps. Hang in there.
Hugs,
Kitty