Now stage IV

[Angela]

I have just found out that my stage IIb is now stage IV. After 3 years of NED, it is in my lung and may be in my bones. It is still Her2 +3 which is good because now they can give me herceptin. I am still in shock and could use some advice. I guess I am going through the blame stage. How many of you follow a special diet? I have spent a lot of time thinking about this. I have read that fat caused this, sugar caused this, lack of fiber, etc. If that is true and my sisters and I all eat the same way then why don't they have cancer? (not that I want them to have cancer). Does changing your diet truly help prevent the cancer from returning? Does eating differently help make the cancer go away? Any words of wisdom would be greatly appreciated.

Sad and Confused,
Angela

[Tom]

Dear Angela,

I only have a few minutes to respond, as my back injury will not allow me to sit for very long. There are many many posts on this site about diet and supplementation helpful to HER2+ BC patients. Please search for and read anythying written by R.B. He is a relentless proponent of fatty acid management, and I have come to agree with him whole heartedly on his theories, as many have been born out through recent research.

Also read about the Greek Diet, and browse the thread that was started some time ago that details the many diet and supplementation regimens of the women on this site. You will see a patern of items developing. I will list a few of them that you may Google search. Simply type the name of the item+HER2, and you will find a wealth of information. Many of the items have been found to down-regulate the overexpression of HER2 in your body. That alone will helps a great deal in the treatment of your disease. Also read a posted article under Articles of Interest, by Heblaj. It concerns the supplement curcumin. Here is a quick run down of helpful items.

Curcumin, green tea and green tea extracts, olive oil, pomegranate juice, fish oil suplements, flaxseed and flaxseed oil, vitamin D-3, oil of evening primrose, folic acid, cruciferous vegetable extract, indole3-carbinol, alpha tocophyerol succinate, blueberries and blueberry juice, dark sweet cherries, inositol hexaphosphate.

Of course, your oncologist will discuss ibandronate and other similar drugs known as bisphosphonates for treamtent of your bone metastases. Remember that you wiol no doubt have both Herceptin and Tykerb available at some point as well. The grim reaper is not always as close as he seems, but until they can cut off his head and put it on a stick, it never hurts to use as many tools as you can to fight.

And as far as your current diet is concerned, I would try to eliminate red meat, and lower your fat intake to 20% or lower of your total caloric intake. That alone is a good start. Take care.

Sincerely,
Tom

[tricia keegan]

Angela I don't have any advice to offer you but wanted to tell you I'm sorry to hear this bad news.
My friend has had bone mets for three years which has been contained on herceptin alone which may give you some hope.
I too have'nt changed my diet much since dx although I am not stage iv I intend to put the time aside to look at this in more detail myself.
I wish you every good wish for the New year and hope they get these mets under control asap for you.
Tricia

[saleboat]

Dear Angela,

I was so sorry to read your post, and my heart just breaks for you. It isn't fair at any time, but especially around the holidays.

I just want to be VERY clear with you about one thing-- NOTHING about your diet caused your cancer to spread. If we knew what caused cancer, there wouldn't be any-- right? If the link between diet and cancer was that strong, I wouldn't have gotten it-- I was a vegetarian for 20+ years before I was diagnosed with breast cancer at age 34. Please don't add shame and guilt to the already overwhelming emotions that you are now feeling. THIS IS NOT YOUR FAULT!!!!!!!!!!!!!!!!!!!!!!

I hope you will read through this site and get to know the many women who are successfully battling lung and bone mets. Her2+ cancer is a horrible one to have, but luckily the drugs are even better and I hope that Herceptin will do the trick and get you back to NED very soon.

Repeat after me: THIS IS NOT MY FAULT!!!!!!!!!!!!!!!

Wishing you some peace this holiday season, and strength and courage for the next round in your battle.

Jen

[Kimberly Lewis]

Thanks Jen for repeating that! It goes w/o saying that healthy people get cancer every day... I do think the anxiety about swallowing a ton of suppliments and the claims that go with them is not necessarily worth it. Balance is more important. I listen to my friends advice and keep what is good for me and put the rest on the shelf. I DO listen to my Oncologist, I Do take my treatments and I do live my life to the fullest.... guilt be dammed.

[Hopeful]

Angela,

Re: your comment about your sisters eating the same food and being cancer free, please read the comment below from Dr. Susan Love's blog from the first day of this year's San Antonio Breast Cancer Symposium:

" Research that indicates that much of breast cancer is not caused by genetic mutations but rather is due to temporary suppression of a gene. Like a switch these “temporary” mutations (epigenomics) can be turned on and off. This helps explain why identical twins with the exact same genes and mutations do not have the same incidence of breast cancer."

It just goes to show how truly unique each and every one of us is. I also agree with everyone here, no guilt over diet - bc is an equal opportunity disease. If the answer were that basic and simple, Herceptin would never have been invented.

Best of luck to you with your treatment plan,

Hopeful

[MichelleMoon]

Angela,

I'm sorry for you. I know how painful the stage IV news was for me, too.

My breast cancer diagnosis helped energize me into adopting a healthier lifestyle. I lost 30 lbs and began exercising daily. I'm not sure it helped extend my time to reoccurrence, but I sure felt better.

I went 7.5 years NED before Stage IV to my lung in June '06. Taxol and Herceptin did the trick for me. Hopefully you will have very good success with your treatment. So many on this site have fought this beast back for many years.

Michelle

[jml]

Angela~
I'm so sorry that you're going thru the shock, disbelief, guilt, sadness and all the other confusing emotions that come with this disease.
I was diagnosed Stage IV (liver mets) since my primary dx in May 2002. It was particularly frightening because my perception of Stage IV disease was so dark & ominious. But I'd never met any Stage IV'er like ME!! If I knew then what I know NOW...!
I have continued to teach Pilates throughout (4 days after the initial lumpectomy,and also 6 days after a mastectomy, as well resumed teaching after a liver resection) w/a post-op drain still in place, stitches and even a portable pump w/a continuous IV for one treatment I was on, but most importantly, I have continued living well and being well. I hope and believe that being active & visible and sharing my experience with women (& a few men) who take my classes will help change their perceptions of this disease.
True, our journey as Stage IV'ers can be quite a bit bumpier that early stage BC'ers, with more complex treatment histories, more surgeries & procedures, requiring us to be more diligent about our care. And unfortunately as Stage IV'ers there is no 5-year mark to look towards to be deemed "CURED".
BUT very little of my life these past 4 1/2 years has actually felt dark & ominous! And you will find so many wonderful, knowledgable, empowered friends on this site who can say the same & offer you wisdom, encouragement, comfort & support, in every way possible. We all have continued to have full, rich, active lives as we are survivING this disease.
We know more today about this disease & her2 than we did even a short 5 years ago. We have more treatment options. We have longer term data to support our survivability. Be sure to check out Christine's note on 12/24 - so encouraging, SO EMPOWERING!
We are Changing the Face of Breast Cancer. And survival begins the day you're diagnosed, not after 5 years. I thank God for this site & am so grateful to Christine & Joe for the community they've created for us. And now I know I'm not a Stage IV Anomaly - I've found SO MANY women "like ME" here!

Stay strong, and when you can't, LEAN HARD!

Keep the Faith~
Jessica

[micheleu]

Angela,

I help you out, what was your treatment at first dx and your plan of tx now? Alot of us on this site have been there, done that, so if you could everone some more info we could help you out.

[Heart Sutra]

Angela,

We've learned right away that if you spend enough time gathering information about cancer, you'll soon have enough advice to counter every other piece of advice you have.
Eat this, don't eat that, live here and not there, drink this not that, test for this, but not that... gets annoying and crazy.

Jen said it very well above, If it were me, I would heed her counsel on this one.

I'm sorry you've received news of stage IV, but as you said (and as many women here are proof of) this is a highly treatable situation in the present, and it is only getting better.
Sue often says she feels guilty about getting cancer, as if there were something she could have done, or can do, to change it. This is not the case of course, and logically she knows that...though guilt still comes. So, I hear a similar thing in what you've written. You aren't alone with that thought certainly.

I would re-read what all the others have said. There's a lot there to hang on to. We just wanted to say the guilt part of it is close to home for us as well.
We're thinking of you. Keep us posted.
Thank you for being here

[Becky]

Dear Angela


Don't despair that you have done something that caused your cancer or caused it to return. When I was first diagnosed, I felt that I "deserved" to have something happen to me because I was doing everything wrong. I let myself go and gained 50 lbs (I have since lost almost 40). I didn't exercise and ate what I wanted (and way too much of it). I certainly didn't know anything about health or nutrition.

I can say that even though it was my therapy to change, it does not mean it is the magic bullet by any stretch but good health does help one weather through and heal better.

If you logically think about it, I was like a typical American woman - overweight, no exercise etc. However, only 1 in 7 or 8 women will develop bc in their lifetime so if it was any of this - we would all be waiting in line for our masectomies!!!

There are so many treatments and new drugs on the way. You will have many, many years of NED ahead of you and we are all likely to die of something that is totally unrelated to this disease. We are here for you anytime.

[Mary Anne in TX]

Hi Angela!

I'll be praying for peace to sweep over you and lift off that feeling that you did anything wrong. As I read the words of the heroes on this web site, I know that Stage IV is doable! I see victories in all they say and do. I get blessed by each of their battles and victories!

About the food and supplements thing, I think we all are different. From what I have read and learned, I believe that we all have different bodies and genes and need certain things to "beef up" our immune systems. I study my blood tests each time I get them to see the pattern in them and really try to listen to my body when it feels good and when it doesn't as to what I eat, how much I exercise and how I handle stress. I think there is lots to learn and lots of information coming.
There is sooooooo much good stuff on this site. I agree that we can take what we want and leave the rest. I find that as time passes, I am able to take more in. I accept some new stuff, put it to use and then "rest a bit"! Then I study some more, take in some more and put it to use. It seems to be a process for me. I can only take in so much at a time and make so many changes at a time without getting overwhelmed. But I like believing that I can help to help myself. I've added exercise daily and love how it makes me feel. I've cut red meat to almost none and other bad fats to a minimum. Doesn't mean I don't "cheat sometimes", but it happens less and less as I feel better and better. We'll know when we know what works best, but I just like doing something myself. But we're all different and I applaud each person's commitment to empowering themselves to lead their own life!
Wishing you the very best in the New Year.

[Bev]

Sorry about the bad news Angela. I guess the bottom line is no one knows for sure if diet will change the course of things. I was PO'd getting BC while going to the gym 5x/wk and eating salads with walnuts every day.

I take supplements sporadically in the event they might work, ie curcumin, fish oil, steak, chocolate etc. In any case, a decent diet and exercise program, may keep you more resilient to the chemo side effects.

Keep up the fight. It is not your fault. Bev

[Jean]

the whole theory of taking good care of ourselves. Exercise, proper rest,
eliminate stress as much as possible ...etc. etc. it all has a role. But we
must also acknowledge that our own bodies are in control no matter what
we do or don't do. I have an Aunt who smokes like a chimney and drinks
like a fish....she is in perfect health and lives a active life and runs her own
home, she is 93 years old and kicking strong. So you see Angela we just
don't have the answers. It helps to take care of our bodies as that will
give us improved odds, but certainly no guarantee that we will be free
from any disease. Do not be hard on yourself as none of us here did anything
to get bc. As you already know the last few years have given us great
medicines and treatments to fight this monster.

I am sorry that you have been dx. stage IV, I will keep you in my prayers
and think positive, the mind does help to heal the body.


Hugs,
Jean

[RhondaH]

I am one that puts a lot of store in diet and while I feel it is beneficial for EVERYONE, I feel that it has a LARGER benefit for some breast cancer patients vs others in terms of helping prevent recurrence. I hope it's not inappropriate my asking, but in a prior post you wrote that your oncologist wanted you to "take herceptin once every 2 weeks for 12 weeks"...did you do this? Take care and God bless.

Rhonda

[Angela]

No, I did not take the Herceptin. My husband, onc and I talked about it and decided it would be okay to wait until this Winter. We added on to our house this past summer. It would have been very hard for me to do all that need to be done and take herceptin so we decided to wait. Don't worry...I have already been kicking myself for that one. But I know that it may not have changed anything. The cancer may have already started to grow at that point.

[RhondaH]

ANOTHER question...curious, what does your HUSBAND think of diet etc being that he is an oncologist? Take care and God bless.

Rhonda

[Angela]

I must have typed something wrong. My husband is not an onc, he is an elevator inspector and a fireman. I meant to say that the 3 of us talked: me, onc, and husband.

[tousled1]

Angela,

I'm so sorry to hear that you have progressed to Stage IV. No one knows what causes cancer or, for sure, there'd be a cure! Don't feel guilty that somehow something you did or didn't do caused the breast cancer. As for waiting to get the herceptin -- don't second guess your decision. I know it's hard, but do try and not look back on any decision(s) that you made about your treatment. As for diet and supplements -- I believe that a healthy diet

[CBergman]

Very sorry to hear your news. This whole her2 thing freaks me out. I also didn't take herceptin as it wasn't given to early stagers when I was diagnosed in 03. But luckily we have new drugs coming out all the time and being positive anything responds well to drugs. I personally don't think food helps all that much. Mind you, it's common sense to not eat junk or prefab foods out of a can or box. It helps to eat healthy and keep your immune strong. But I don't think it's a cure. I've been on a raw food diet for 2 years eating as much nutrients as I can but have met too many vegetarians that also got diagnosed, so who knows?? I honestly think its the air and environment. Pesticides get in our drinking water etc..... We've been poisoning the earth for awhile now.

How did you find out about your mets? did you have symptoms or did your markers elevate at your followup? curious because I always have back pain and my onc never recommends scans. I always need to insist.

hugs and thinking about you,
Cindy