Long time survival

[IVW]

Please pardon me while I mope a little..

I am a longterm survivor of breast cancer, 7 years since first diagonsis. 4 years since recurrence, 1 1/2 years since brain mets successfully treated. Usually I feel grateful for being here taking care of my kids and feeling well. I try to do everything I can possibly do on my own to prevent another relapse as well as taking herceptin and zometa. I have learned to usually keep cancer in a box on the shelf so I don't get too scared. I speak frequently to other women with breast cancer about my experiences because I am an example of hope for long term survival.


Today it feels like agony, like waiting for the proverbial second shoe to drop. As my onc. at the big name cancer institute told me today, short of a miracle, it is just a matter of time before the breast cancer will return, probably more brain mets. Overstating the obvious, for sure! Here I was feeling lucky that I had breast cancer not lung cancer or ovarian because I seem to have more treatment options. Silly me. Well, I will keep plugging away and hope for that miracle that I will survive long enough to see my kids grow up with most of my brain intact!

How do others in this situation handle the stress? I know the answer to this for myself because I have been doing this for so long. Someone else in my long term situation? Just curious.

IVW

-1999 Diagnosed at 39 after birth of third child. IDC, 36 nodes+, ER+, her2+
Mastectomy, chemo., radiation to chest and node area, tamoxifen.
-Late 2002 recurrence to bones and eventually to liver and lungs while on hormanals
-2004 Start Herceptin/navelbine weekly, cleared up within the year. Continued treatmen for one yeart.
-2005 3 Brain mets., no cancer in body. Whole brain radiation followed by radiosurgery.
-2006 Everything clear for 1.5 yrs. continuing on Herceptin and Zometa...

[Becky]

Don't mope. Christine Druther, our website leader, is very much like you but has survived from brain mets over 7 years now and is still fine. She was first diagnosed in 1990 then about 8 yrs later had mets which included mets to the brain.


Just keep getting your brain MRI every 6 months to be sure and continue with your herceptin. It is not inevitable. Dying one day from something (a gunshot wound from a jealous wife at age 90?) !!!!

You've come this far and are still NED. Woo hoo.

Kind regards and a big hug

Becky

[Barbara H.]

Hi IVW,
I was diagnosed in 1998. My first recurred in May 2004 with mets to liver, lungs, skin and a 3cm met to the brain. I had brain surgery and Herceptin cleared everything until I developed minimal bone mets last March. Since then I have been on Zometa and Navelbine along with Herceptin and am responding, but I am not completely NED in the bones. I had to have brain surgery again l a year ago and it turned out to be radiation necrosis. The area is still lighting up, but we are just watching it at this point. I am being treated at a major cancer center and everyone there seems positive about my case at this point. Nevertheless, I certainly understand the meaning of stage 4. My oncologist has never been so negative even when I had all those mets. At this point , no one can predict the future and we there will be new drugs in the future. There are many women on this sight who have survived brain mets for many years. I'm sure they will write or you can just research under brain mets. I think it is important for you to find an oncologist who offers you hope.

In addition to my current situation, I am teaching third grade full time and taking courses. It's not easy, but you can have a life and live with breast cancer. Brain mets is an issue with HER2, but you can survive them, and continue to maintain your hope.

Best wishes and good luck,
Barbara H.

[lisahammo]

Dear IVW,

I understand where you are coming from. You try so hard to stay on top of things, but when an expert gives you news like that, it is devastating. CAn I just say though, I think that your onc is dreadful and should be ashamed of themselves for making you feel that way.

My onc does not give up. she is always telling me she has lots of tricks up her sleeve, and I have seen patients in their final weeks, and she still does not give up. There are some people who want to know a prognosis, but I firmly believe that if you are told this, you will sit looking at the calendar, counting down the days.

So, even though it is difficult, don't sit around "waiting" for the mets to reappear. Tell yourself, OK, I've had that little grieving time, now it's time to move forward again, and enjoy every day that I have here. You will regret it if you don't.

Love Lisa

[Bev]

I believe Becky is moderating a chat room this Sun on when to change your Doc. Might be relevant. On one hand cancer manages to survive but then on the other, there are many women who survive. The fight's not over. I wish we had all caught this disease 10 years later. I guess it's better than 10 years ago.

IVW, I guess we all wait for the other shoe to drop. We do survive longer than the other cancers. Maybe you could try an antidepressant. I started because my heart would race during routine or not so routine scans ( panic attacks I guess ) I didn't actually feel depressed. If someone had even suggested this 2 years ago, I would have been offended. Me crazy? Be it placebo effect or for real, I'm coping better. Maybe our body chemistry is just off. Don't mean to sound like a pharmaceutical rep.

I feel for you. Cancer sucks. Chin up, there is no reason why you can't be one of the folks who beat this. I think you are doing great in your approach. The mental effects are so much more than the physical. We are with you. Best wishes, BB.

[jhandley]

Hi IVW
I guess I am also a long term survivor..(LTS). First dx in 2001; 2cm tumour, 1 node +, ER/PR-,her2 not tested then but when tested 12 months later her 2+.
Went on taxotere trial. NED until 15 months ago when second tumour in breast and 1 liver spot. I am sure 2nd tumour was there in 2001..it didnt show up on u.s or mammo. 15 months ago. Anyway taxol and herceptin and now herceptin alone. NED at 1st scan after tx. Still NED.
I have gone back to fulltime teaching and am just getting on with raising my daughter (nearly 10) and living life to the full...playing cricket, canoeing and learning the fiddle as well.
I get upset a lot more easily now but also find I am kinder to most i meet than i was before.
I am also very careful about use of my (precious) time.

I do the omega 3 thing and Q10 (both cross the blood brain barrier) and olive leaf extract (Gina found this good for bone mets)and reishi mushroom extract(enhances herceptin), I also do the flaxseed muffin a day (reduces her 2 over expression by 70 %), vit B, D, grape juice and dark chocolate.

I find people contact the best thing to "keep the sword from falling" and also with the omega 3 I definately feel a lift in mood after I take 20 ml flax oil, 80 ml skim milk and Milo (choc vit powder).

I have also found a new (old) friend who survived melanoma 15 years ago..coincidentally we had the same surgeon.He was given a 50% chance of surviving 5 years.

I walk every day for at least half an hour again with someone else which helps too, listen to meditation tapes at night.. And of course the old faithful...just take one day at a time.

Cheers
Jackie

[tousled1]

IVW,

Although I'm not a long time survivor, I feel your pain. I think you are an inspiration to us other women here. As for your oncologist's statement -- miracles do happen. I too try and keep my cancer on a shelf but have a daily reminder of how fragile things are. There is hope for us HER2 women. Not long ago there was no Herceptin and now soon we will have Tykerb available for treatment as well. I'll keep you in my prayers.

[IVW]

Thank you all for your replies. They were just what I needed, a little boost and some good suggestions from women who know what I am talking about. I am doing better today, determined to keep looking forward to the future. After all, no one knows what will happen next.

I think my onc. was having a bad day; he usually is optimistic and full of ideas which is why I consult with him. I was also feeling tired and overly sensitive (a long drive and a long wait in the waiting room).

It is good to know this website is here when I need help...
IVW

[pattyz]

Dear IVW,

I may offend some here and my apologies in advance for that. This is just my opinion, remember.

I think it is much much MUCH more difficult when you are as young as yourself ESPECIALLY with small children. I'm 57 with two grown daughters. So, for me, I know I would be handling my situation with much more fear and dread if they were young.

From what you've said in both of your posts, you sound like you are generally 'on track' in dealing with everything. And it is also your right and so very normal to have those bleak down days, no matter what else is going on. Your reaching out is evidence of healthy coping skills.

Early Jan of 2000 I was dx'd with Stage IIIb, so am close to your 7 yrs.

Since Sept of 2002 I've been dealing with brain mets, a total of 24 so far. Currently (and for nearly the past 18 mos.) am dealing with 8 lesions in brain. Have been NED in body (knock wood) since late 2002. That amounts to surviving, even WITH ACTIVE brain mets for a bit over four years.

I've been able to let go of a lot of 'crap' by getting all my 'affairs' in order more than three years ago. There may be a few things you could do in that line that could help you, too. But specific to your children. I believe I would have done more along those lines should I be in your position. As it is, I've prepared little notes of wisdom (lol) and music CD's, photos etc.

Here's to worrying about a sagging arse, thin grey hair and asundry other OLD AGE related issues )

Wishing you years of good days, one day at a time.
with hugs,
pattyz