Prognosis - understanding

[ron55]

Hi

My wife (aged 49) was diagnosed with bc on 6th December 2006 and started chemo on 20th December with the operation happening in 6 months time.

She has a 25mm HER2+ ER+ tumour close to the nipple with at least one lymph node infected. It has been classed as grade 2, stage 2. A CAT scan showed that the disease has not spread anywhere else in her body.

My/our prolem is her prognosis. I found out today that after reading various web sites etc. she is convinced that she will not be here in 5 years time, not overly upset as she never has had any fears of dying just convinced. Now I am not just trying to get her spirits up because she is OK in that respect but I just think she is wrong (statisically). I can't find the information to back up her thoughts. Is she correct?

I do know all cases are different so I am talking about things in general but her thoughts have me very worried.

Cheers, Ron

[KellyA]

Ron,


I am writing you because you really struck a note when you talked about how your wife felt. When I first found out, I researched just long enough to see the "poor prognosis" on a few sites and immediately had a very serious talk with my hubby about what he should/needed to do for his and our children's future if I wasn't around.

Now, eight months later, I feel completely the opposite. I am not only hopeful of beating this disease, but am feeling like things are on my side- not a guarantee, but definitely better than I thought at diagnosis. There are so many new incredible drugs to fight Her2, and it is quickly becoming better to have it as the treatments are so targeted. This sight is WONDERFUL, and the people are so knowledgable and helpful, and can guide your wife through everything.

Now, instead of having the horrible talk we had early on, we talk about our dreams and what we plan for our future. The beginning is the hardest time. It really is. It will get better as your wife goes- small baby steps and one day at a time. My thoughts and prayers are with you both. Please let us know if you have any questions or need anything at all.

Kelly

[KellyA]

P.S.- It is important to know that the statistics that she is looking at are old. The data that is printed is based on medicines that were given 5-10 years ago, when Herceptin and some other drugs weren't even given yet. If you look on this site, under Her2 prognosis (a thread), in it there is some pretty good data from ASCO 2006 that is more current. It is included in one of the first few posts in that thread. The numbers are much better than alot of the old data.


Kelly

[juanita]

I know how your wife feels, AND unfortunately i had an onc at that time who emphasized the bad odds as a means of getting me to do what he wanted when I questioned things. But that was 9-04 and I'm still here, driving my kids crazy and relishing my role as grandma to my eight month old granddaughter.

[MJo]

I felt that Her2 was a death sentence. I also felt I had five years left. As treatment progressed and I learned more from this Forum and my medical team, the fears lessened. I'm very hopeful, and I trust that your wife will feel the same in time. As you know, she is definitely wrong statistically. I also took an antidepressant for the first time in my life, and I'm glad I did.

[Sherryg683]

I would trade prognosis' with her any day. Stage I with no lymph node involvement is great, (as great as any cancer diagnosis can be). And with Herceptin and Tykerb out now, she'll probably be around for a long, long time..sherryg683

[penelope]

I felt the same way. Even tried to convince my husband to date and find a new "mother" for out 3 and 6 year olds.

I am now just under two years out and they can't find it anywhere. I am cautiously optimistic. I think that it is really important to show her the new stats. Her2 is actually becoming a good thing as long as it has not spread at diagnosis. With herceptin and now tykerb, not to mention dietary changes you can reduce your chances dramatically.

This time is the darkest part of the journey. Once she has surgery she will feel much better, and so will you.

[TriciaK]

Ron, You are wise to post on this site, because you and your wife will hear about a whole lot of us who have beat all those dire old predictions. I personally have been fighting BC for over 20 years. I was first diagnosed in 1985, then 1990. In 2004 my oncologist diagnosed BC again, this time her2 cancer, and told me I might have had 3 months to live if they hadn't found it. The other two cancers were almost assuredly just BC, not her2, which used to be the worst kind of BC and nearly always fatal in aobut 3 months. Now it is one of the most treatable.I went on herceptin, navelbine and femara, and am now in remission. I am 77 and have a good quality of life. I expect to be around awhile longer! Tell your wife that there has never been more hope and more good treatments to extend life than now. Women are living long beyond the old statistics. Tell her to read this website and decide that she is going to be a fighter too. I call us Amazon warriors--- the original Amazon warriors supposedly cut off a breast so they could fight better with a bow. You and she can go back and read all the entries and see what a positive group this is. We have lost a few wonderful people, but they fought long and hard, far beyond what many old statistics expected. Read about our website's founder, Christine, and her remarkable story. This is the place to get what you and your wife need: information, understanding and lots of love and support. We pray for each other, too, and we all pray you and your wife will find all you need here to keep going and to fight the battle and win! Hugs, Tricia

[shondagaylord]

Please explain what you mean by this. "Her2 is actually becoming a good thing as long as it has not spread at diagnosis." What makes the Her2 gene any different if it has spread or not? That is a real scary sentence. Just curious.


Thank you

Shonda

[Bev]

Shonda,

HER+ cancers tend to grow and spread faster than hormone positive HER2- cancers.

Herceptin, which was just approved for early stage 2 months ago, works by attaching to HER2 receptors on cancer cells, helping antibodies identify and kill these cells. It doesn't work for everyone.

Ron, No one knows the future, but there's no reason to think your wife won't have many happy years in front of her. I think they are very close to making BC a treatable chronic disease. Read the posts and the studies. It takes a long time, but eventually, you'll feel there's hope. Bev

[shondagaylord]

I know this about Her2 and herceptin, but what I am not understanding is why her2 is good as long as it has not spread at diagnosis. It just doesn't make sence. HER2+ is HER2+ whether it has spread or not right? Herceptain works the same way on the cells no matter where the location. The weird thing about mine was that at the time the lump was removed it didn't show to be her2 but when they did the mastectomy and the bone biopsy her2 showed up every where so who knows.. All I know is I am on herceptain and I feel and look great and I have a life to live and 5 little kids that depend on their mommy!!! IT WILL not interfer with that!!! However I took them skating today, but I did not skate scared I might break my hip or something. Thanks,


Shonda

[Joe]

From the American Cancer Society:

Staging and Survival Rates
Staging is the process physicians use to assess the size and location of a patient’s cancer. This information helps determine the most optimal form of treatment. Breast cancer stages range from Stage 0 (very early form of cancer) to Stage IV (advanced, metastatic breast cancer). Click here for a detailed explanation of each stage of breast cancer.

The five-year survival rate for breast cancer is calculated based on averages. Each patient’s individual tumor characteristics, state of health, genetic background, etc. will impact her survival. In addition, levels of stress, immune function, will to live, and other unmeasurable factors also play a significant role in a patient’s survival.

<CENTER><TABLE cellSpacing=0 width=300 border=1><TBODY><TR><TD align=middle bgColor=#ececff>Stage</TD><TD align=middle bgColor=#ececff>5-year Relative

Survival Rate
</TD></TR><TR><TD align=middle>0</TD><TD align=middle>100%</TD></TR><TR><TD align=middle>I</TD><TD align=middle>98%</TD></TR><TR><TD align=middle>IIA</TD><TD align=middle>88%</TD></TR><TR><TD align=middle>IIB</TD><TD align=middle>76% </TD></TR><TR><TD align=middle>IIIA</TD><TD align=middle>56%</TD></TR><TR><TD align=middle>IIIB</TD><TD align=middle>49%</TD></TR><TR><TD align=middle>IV</TD><TD align=middle>16%</TD></TR></TBODY></TABLE></CENTER>



<CENTER><TABLE cellSpacing=0 cellPadding=0 width=300 border=0><TBODY><TR><TD>Source: American Cancer Society</TD></TR></TBODY></TABLE></CENTER>



Breast cancer survival also continues to decline after five years. Survival after ten years depends on the stage; early stage breast cancers are associated with high survival rates than late stages cancers.





<CENTER><TABLE cellSpacing=0 cellPadding=3 width=244 border=1><TBODY><TR><TD vAlign=top bgColor=#ececff colSpan=2 height=18>

Overall Survival Rate

</TD></TR><TR><TD vAlign=top width="50%" height=76>After 5 years

After 10 years
After 15 years
After 20 years
</TD><TD vAlign=top width="50%" height=76>85%

71%
57%
52%
</TD></TR></TBODY></TABLE></CENTER>



<CENTER><TABLE cellSpacing=0 cellPadding=0 width=244 border=0><TBODY><TR><TD>Source: American Cancer Society</TD></TR></TBODY></TABLE></CENTER><CENTER></CENTER><CENTER></CENTER><CENTER></CENTER><CENTER>Regards</CENTER><CENTER>Joe</CENTER>

[Bev]

Shonda.

It hasn't happened to me personally, but I have read of people having HER2- neg breast cancer with HER2+ mets.

HER2+ is now good because we have a drug for it. Spread, mets or stage IV are still not good, as far flung cancer in organs more useful than a breast are harder to deal with. You can't really have your lungs, liver, brain or bones removed.

Don't dwell on the stats, lot's of people here have had stage IV for a long time. Don't know if we've answered your question, best of luck. BB

[SusieQ]

I have a similar diagnosis and have spent hours searching for prognosis statistical data.

A few weeks after I was diagnosed, I decided to change my focus.

I now allocate a few hours a week researching clinical studies and results regarding health, diet improvement and cancer. I want to make sure I am doing everything I can to beat and exceed the statistical odds chart.

As a matter of fact, the link below leads to information from UCLA dated Dec 2006 and coincides with the treatment I currently am receiving -- Neoadjuvant Chemo Therapy (Taxotere, Carboplatin and Herceptin).

I also setup a blog to help channel my feelings, thoughts and treatment ups and downs. Please let me know if you or your wife want to compare notes or just chat.
http://www.newsroom.ucla.edu/page.asp?RelNum=7595

[John21]

You have a long way to go. As someone else said, I would trade the stages easily with you. There are so many options for your wife. No doctor should say or will say how long anyone will live. Each person is different along with each case. The stories of all these woman are herotic and inspiring. Your wife can live a long a thriving life and still have the disease. I do not think of a cure for my wife anymore, I just think of keeping it at bay. The longer it stays at bay, the more possibility of a newer, better and stronger drug will come out.



Stay strong and educated!

John

[Heart Sutra]

Welcome,

As Kelly pointed out in the first post, chances are the information your wife has read regarding very poor prognosis is out of date.
This was our introduction into the (terrifying) world of HER 2 + cancer as well, and it was Kelly, and others, who pointed the same thing out then.
Cancer research is fast moving (not as fast as all of us would like, but fast no-less) It is true that with Herceptin being given to "early stage" people, like your wife, there is talk about this type of cancer's prognosis having changed from one of the poorest to one of the most treatable.
It is annoying to research information. You will find WAY TOO MUCH information about cancer that isn't accurate, isn't legitimate or is just simply outdated. So, as was said to you earlier, stay as educated as you can, and check your sources and the sources of those who offer opinions based on medical/scientific grounds.
Believe it or not, chances are far in your wife's favor. She and you can have a little relief in this knowledge, though we know this isn't easy.
Thank you for being here

[saleboat]

Ditto to most of what has been said above, your wife by NO means has been handed a death sentence-- I know how terrifying it is to find out you've taken up residency in Cancerland, but really, it all likelihood she will be fine. I once felt the same way that she did, but once I learned more about Her2+, the effectiveness of Herceptin and all the drugs now in the pipeline for it, I began to feel a lot more confidence. (And as you can see from my sig. below, I had an ugly pathology report.)

It still sucks to be confronting these challenges, but really, there is a lot of hope in our little corner of Cancerland.

Good luck,
Jen

[ron55]

Just wanted to say a big thanks to you all for your thoughtful and informative replies.

Obviously their are no guarantees about any of this but I certainly feel better and my wife will do when I show her all the information and replies. She is not really a forum type of person so you may just have to put up with me asking the questions.

I had never heard of Tykerb before today but that just about sums up the health authorities over here in the UK. It was only last year that Herceptin was sanctioned for use by our National Health Service which is a good service but is under severe financial restraints. Luckily we have private medical cover.

We go for blood tests on Wednesday with the second chemo on Thursday so I can go armed with more questions which is also good. I will be in touch.

Cheers, Ron

[Adriana Mangus]

hi Ron: I'm a 12 years bc survivor, with mets to rt lung. Diagnosed in 1994, had a recurrencen 1n 2003. I have been on herceptin since 2003 and am doing great!!!! Please tell your wife to stay positive, not do dwell on numbers and stats. I know what she's going through, all of us on this site know it. Being Her2+is a good thing, since the scientists have spent a considerable amount of time + money researching for drugs to help women like us...with Her2+ diagnosis. It's not a death sentence....Do you know that just 25% of all cancers are Her2+ but docs know that this type of bc is aggressive so they have been working for years on drugs to help us live longer and with minimun side effects, in some cases no side effects at all. Give your wife my love, so proud of you to have written a note to us....Keep posting, you're going to find many wonderful ladies, positive thoughts from all of us and most of all a very informative site..Stay positive. Love to you both. God Bless!!!

[Sherryg683]

Adriana, did you have lung mets at your intial diagnosis 12 years ago, or did they show up at your reoccurance. 12 years out with lung mets is really inspiring to me because I had a couple of small lung mets that are now gone and would love to think I can get at least 12 more years of good life quality..sherryg683