Needing Inspiration-Gr 3 HER+ ER/PR- Node positive Stage IIb/3

Belinda · 03-02-2007, 12:28 AM

Hi - I would love to hear stories from anyone with a profile like mine who is kicking this cancer. Feeling a wee bit low and while I will definitely continue chemo, I'd love to hear from any of you that have been diagnosed for while but have NED.

Might help a few of us...

The stats from my onc for recurrence were dismal, until herceptin is added into the equation and the % falls to 30%. I read your profiles like a mad thing looking for inspiration, so I thought I would just start a thread...

Belindaxxx

Mary Anne in TX · 03-02-2007, 05:15 AM

Hi Belinda!

I remember the day that my onc. talked to me after my surgery. He said to me, "you know it may all be gone after your surgery, but since we don't know for sure, why don't we just cover all the bases." In that moment he gave me hope and at the same time let me know that we'd "pretend" it wasn't all gone and treat it like it could be anywhere. I guess I've gotten a "Let's be sure" treatment plan and I'm so glad. But I go back to that day of hope often in my mind - when tumor markers are high, when scans show goofy stuff on them, when I feel just aweful - I go back to my day of hope. My last scans were clear and my last labs were great! I'm just being thankful right now for that. I'm not expecting more spots to show up, but I'm not dreading it either right now. I'm just being grateful that I feel terrific (just a bit draggy from radiation which will soon pass) and have some brain power back. If they'd let me take more stuff as it comes out, I'd do it in a flash. I just can't give up on any of us licking this thing! Not sure why we got it, but I do believe our battles will help many in the years to come. Take a deep breathe and take it one day at a time. Even on it's worst day, cancer is not more powerful than the love we receive here and from others while we're being treated. Best of luck on your journey and God Bless YOU! mary anne

KellyA · 03-02-2007, 06:01 AM

Hi Belinda,

I am not very far out from diagnosis, but I do have a very similar one. I am a stage 2b also- er/pr-, her2 +, grade 3 +++, 2 tumors 2.2 cm and 0.6 cm, 3/5+ nodes. I think that I worry alot also- I am almost as worried about being er/pr- as I am about Her2.

This is what my onc. (who is wonderful) said on my very first visit:

If I did nothing else after my surgery (no chemo, etc) I would have a 62% chance of the cancer returning elsewhere.

With chemo (standard, "old school chemo"), I had a 38% chance of the cancer returning.

With "new chemo" (newer drugs, newer methods of giving it) I had a 32% chance of the cancer returning.

With the addition of Herceptin, my chances of the cancer returning were about 20% over the next 10 years.

He also phrased things in a very optimistic light, and acted like we just needed to "clean house really good" and that my prognosis was a very good one. It is definitely very scary thinking of the what-if's and I do more of that than I should, but the fact of the matter is that we have alot on our side and are very blessed to have the treatments that are available to us today.
I pray alot and read a quote regularly that my radiation onc. (who is also wonderful) told me to focus on

Matthew6:25-34 (Do not worry)

I love how it ends- "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own"

ISN'T THAT THE TRUTH! :-)

Love, Kelly

KellyA · 03-02-2007, 06:15 AM

Belinda,

One more thing- pull up Audrey's profile. She is very inspirational and has had wonderful success with a similar dx. There are many women on this site surviving and living well. Things will get better as you get further through treatment and can see the light at the end of the tunnel.

Love, Kelly

vickie h · 03-02-2007, 10:59 AM

Belinda, I Was Diagnosed 2/04 With Your Exact Diagnosis (3b, Er/pr- Her2+++, Inflammatory Bc). And Here I Am 3 Years Later (i Even Had The Exact 6 Of 19 Nodes Positive Like You) My Last 2 Pet/cts Have Come Back Clear Except For A Small Amount Of Skin Involvement. No Mets Anywhere. I Am Entering My 4th Year And Feeling So Good And Positive For The Future. You Will Do Great And Stats Are Just That---stats. They Don't Take Into Account Your Individuality, Your Diet, Your Lifestyle, Your Beliefs. I Was Given A Very Poor Prognosis At The Beginning. I Now Have Another Onc And Greet Each Day With Love And Hope. You Will Do Great....i Am Rooting For You....you Go Girl. Love, Vickie

tousled1 · 03-02-2007, 03:05 PM

Belinda,

I was diagnosed Stage III in October 2005. I'm scheduled to finish my year of Herceptin in June and since my surgery I've been NED. You can look at my signature to get all my details. Don't despair, there are many women on this board who are Stage IV and living a full and wonderful life. I will keep you in my prayers.

Belinda · 05-04-2007, 03:26 PM

Hi everyone. Tousled, Vicky, Kelly and MaryAnne - I want to thank you for sharing your wisdom with me when I initially made this posting - realised I had forgotten to get back to you. I am through my EC treatment now - Taxol and Herceptin to start in 2 weeks (bring it on!) and feeling more optimistic, taking each day as it comes. Of course things will go up and down, but, I am here, aren't I? Thank you again, I deeply appreciate your companionship through all of this! I hope all of your journeys are similarly moving in a positive direction. My warmest regards to all of you - Belindaxxx

KellyA · 05-04-2007, 04:26 PM

Hi Belinda,

I am so glad to hear that you are doing well so far with your treatments. I think that you will find the Taxol to be much easier to handle. I (12) treatments and just got a little fatigued near the end, but was able to work through it and keep up with my 3 boys. I know how you feel about being a little more optimistic with each passing day. I just finished with all of my reconstruction and have only (6) three-week treatments of Herceptin left. Tomorrow is my one year anniversary and I am amazed over the change since last year. I was DEVASTATED and barely able to function, and now I am so much stronger in every way- physically, emotionally, spiritually...what a journey!! You will be in my prayers, and before you know it, you will be celebrating your last chemo!!!

Love, Kelly

Belinda · 05-04-2007, 04:54 PM

Happy anniversary for tomorrow kelly! I am so glad to hear things are going well, and you even have your reconstruction behind you! You probably won't know yourself when you have finished herceptin! Will be thinking of you, especially tomorrow - love, Belindax

Mary Jo · 05-04-2007, 06:41 PM

Hi Belinda,

I was diagnosed in June of 2005. I was given a PET/CT scan, chest x-ray, and MRI of both breasts after diagnosis and there was NED anywhere but right breast. I had a 4.5 cm tumor removed on July 28, 2005. Initially, right after surgery my husband was told that the cancer had not spread to the 2 lymph nodes they removed but after closer examination during pathology a microscopic cell (one) was found in the first sentinal node but the second node that was removed was clean. I did 4 dose dense A/C and 4 dose dense taxol along with herceptin (the herceptin I did every 3 weeks). Also, I received 28 days of radiation after chemo was finished and then preceded in having a prophylactic mastectomy of left breast because of suspicious calcifications. Thankfully, that breast had no cancer.

Here I am fast approaching my 2nd anniversary from diagnosis. June 24, 2007 will be 2 years. I am doing fine. NED and counting on it staying that way.

Praying ONLY the best for you dear.

Love & prayers,

Mary Jo

sassy · 05-05-2007, 08:08 AM

Belinda,

My history is in my signature and you can see I am doing well! My approach has been to do EVERYTHING you can as far as treatment---but don't forget that life goes on and you should live every day to the fullest. If one has a 30% chance of recurrence----then one has a 70% chance of non-recurrence!!! And stats are stats, we are individuals.

I've never lived my life in fear and don't intent to let cancer force me into that role. So when fear raises its ugly head (and it will), concentrate on the positives and try not to dwell on the negatives. Don't let this disease rob you of the joys of life.

Wishing you the best!
________
redhead girl Cams

lkc Gumby · 05-07-2007, 04:11 PM

Belinda,

My stats below are my story. There is so much hope and progress. I am coming up on my 2 yr mark and feeling great!

Ruth · 05-18-2007, 08:58 AM

Hi Belinda ~ Haven't posted in a while but getting close to the 4 year mark at diagnosis and still NED. You can see from my signature the stats were not great for me at diagnosis but I tried not to pay that any attention and keep my positive attitude up!

I just got back from a fantastic honeymoon trip to St. Lucia and feel great.

Good luck to you & hopefully Taxol will be easier to handle. There is much hope out there!

Peace ~ Ruth

05-18-2007, 09:07 AM

Belinda,

I wanted to mention that recurrence rates are different from mortality rates. For example, I had a very small tumor (Stage 1a, 5mm, no nodes, no ve), yet my recurrence rate is still 18%. But mortality rate is about 4%. So, some times those recurrence rates look huge and we place the worse interpretation on them, but it's staying alive that matters. And my chances of dying of something else in ten years is 20% but dying of breast cancer is 4%. Either way, I hope I'm around. So, although I don't match your prognosis, I know yours is excellent. And remember, in the last few months there have been great reports of forthcoming vaccine trials that look very promising, new drug combinations etc.

Belinda · 05-31-2007, 04:04 PM

Hi everyone

Thank you so much for all of your posts.

Since I posted, I have finished EC (yay!) and had my first two (of twelve) Taxol/Herceptin treatments. And I am feeling good! I think EC was just as bad for my emotional wellbeing as it was for my body (and hopefully the cancer) - so hard to see the light at the tunnel when you are going through that!

With the new treatment, I have been feeling on top of the world, by comparison. When my husband and daughter left for school/work on Wednesday morning, I felt a pang of regret that I was now leaving the house with them for work (as I used to). A good sign that I was getting back to normal! So I got ready, and went back to work!

It was the greatest thing - I am going to try and get back to work part-time and my workplace seems very pleased to see me, and completely comfortable that there might be times when I am too tired to come in, or when I might just hit a wall and need to go home.

So I think the beginning of the rest of my life has already started....

I am grateful for all of your advice and your posts...wellness wishes to you all!

Belindax

michele u · 06-01-2007, 05:47 PM

Belinda,

you've come to the right place!! Ok, you have a very good chance of beating this. I had 35 pos lymph nodes stage 3b 3 small tumors. I was er/pr neg also. My oncologist has had NO ONE recur that was on the herceptin trial. that's mostly stage 2 and 3 women. We are so lucky to have Herceptin. It has truly saved our lives.

Belinda · 06-02-2007, 12:22 AM

Michelle - you are an inspiration! Thanks for your reply. I should have added in my post that all up I get a year of herceptin. Like you, I am please to have it. I didn't know about triple neg being an option until long after dx - my surgeon told me I was HER2+ in a way that showed he was excited - all I had read was that it was bad - now I realise he was worried I might be triple neg! But, hopefully they will narrow that down too and work out how to target more and more bc.

Bx

mke · 06-02-2007, 07:17 PM

My situation is much like yours, same receptor status, node positive. I did chemo before surgery - AC and taxol, dose dense, and had a good response. In the surgeon's words "nothing there but a tumour graveyard".
Then radiation for 25 times and herceptin for almost a year, 2 rounds yet to go. My veins are holding up nicely, my energy has been almost back to normal for months, my hair is thick and sort of curly, my last MUGA had a higher score than the one before I started treatment.

I was pretty ignorant when I started this and a bit puzzled when my doctor was so happy that I was HER2+. You know all statistics are off because it hasn't been all that long that earlier stages haven't been treated with herceptin.

I don't know if I've beaten this, but it certainly appears that I've beaten it back a for a while anyway, and it sounds like you are well on your way to doing the same. Do go back to work part-time if you feel able, it will be good for you to start feeling your life is back to "normal".

LAURIE · 06-02-2007, 07:36 PM

I believe we got the inspiration. After reading this thread I have never felt better about my future and the future for us. Belinda I hope that Taxol is going well. It sounds like it. I am back to work now and doing great. I could not work during my treatment because I stand on my feet for 8 hours at work. The last month of Taxol was the worst for me, mostly because of the acne I got from the weekly steroids. It got my spirits down and I did not want to even go outside or see anyone. (The hot flashes were icky too.) It is amazing to me know that physical appearance kept me in. I did catch up on a lot of housework, movies and reading. Plus I spent a lot of time with the her2 support group. My hair is getting longer now and all the bald spots are filling in. I am going to have to update my picture here soon. I like my short pixie hair. I might keep it for awhile.

"Our future is so bright we have to wear shades". I don't remember who sang that song in the 80's but it just popped into my head thinking about all of us.

Belinda · 06-02-2007, 09:32 PM

I am so glad this thread has turned out to be so positive! Thanks everyone for sharing!!! Some of the imagery you guys have posted is amazing - I am going to use your "tumour graveyard" image when I think about my cancer mke! And yes, Laurie, we do gotta wear shades!!!! Good to hear your bald spots are filling back in!

Might bump this thread every so often - when I first posted I was feeling like I was going to die for certain. I think I was still in shock from dx and the tsunami that followed it. Like Kelly said earlier - each day and week and month I seem to get stronger and calmer and more confident. And Grace's comment about recurrence stats being less important than survival stats is a good point and one I am learning to appreciate more each day as I start to learn from women on this site and elsewhere that it's possible to live a long time with no evidence of this disease, and then, if it returns, to live with it.

Heres's cheers to you and us all!

Belindax