Question about recurrance of HER2 BC

Erin · 03-23-2007, 11:29 AM

Hello All,

I am still quite anxious since I heard about Elizabeth Edwards...even though no one seems to know her HER2 status. So, in trying to put my mind at rest I have a couple of questions.

First of all, I know that no one can predict the course of BC. I also know that I have a great statistical "survival rate", but still I worry, as I am sure we all do, about a recurrance. I see so many women on this site who have had recurrances...but I also know the population sample is skewed. The women (and men) on this board are not a statistically accurate representation of the possible course of HER@ BC since those in treatment of some kind are more likely to read and post, and many who are done with treatment and NED have gotten back to thier regular lives and so don't read or post as much. BUT, it seems like almost eveyone who I've heard about with HER2 positive cancer has had a recurrance.

Does anyone have any stats or info on the likelyhood of recurrance as it relates to HER2 status? All I hear is that recurrance is "more likely", and that there is a "poorer prognosis". Does anyone have an inspiring story about someone who was diagnosed with HER2 positive BC and is happy and healthy and NED 10 years out, or even 5 years out?

Thanks for your info

CPA · 03-23-2007, 11:39 AM

Jill is NED (we just received results of latest tumor markers, liver function, etc. yesterday). She is now 15 months since surgery w/ clean margins and we will continue to hope for the best.

-Rich

saleboat · 03-23-2007, 11:50 AM

Hi Erin,

The 'what ifs' are such a debilitating aspect of this disease, and I so know what it is like to feel the fears that you are describing.

I think it is important to remember that many of the women on this board did not have the chance to have Herceptin in the adjuvant setting like you and I did.

When I look at the long-term stats, which in the 'official' sense for me are pretty dire, I remind myself of the following: NONE, absolutely NONE of the long-term statistics regarding Her2 bc include the adjuvant use of Herceptin, nor the use of Taxol, the dose-dense protocol or the new generation anti-hormonals. Looking for long-term numbers is an exercise in futility and meaningless in regards to you and your situation.

I believe that if you look at the data that was included in the NEJM article regarding the adjuvent use of Herceptin, the recurrance rate for women in your situation is less than 10%. While that is not long-term data, it certainly should give you some confidence that the possibility of a cure is very real for you.

I thank the heavens every day for Herceptin, and curse the fickle hand of fate that kept many of the women on these boards from getting it in the adjuvant setting.

Jen

bashmaz · 03-23-2007, 12:03 PM

I was diagnosed Apr 5, 2002, (1.8 cm, 1+ve node - 27 removed) then lumpectomy, chemo (ACx4, taxolx4), 37 radiation - this was before dose-dense, and I actually chose NOT to have Herceptin (it was still in clinical trials for early use and I was kind of put off by the not crossing the blood-brain barrier).

Not having had herceptin allowed me to enter a GSK clinical trial for a her2+ vaccine at UWashington in Seattle in 2004. Now, I'm also eligible for the Tykerb trial for those who have not had herceptin, and no recurrance. I began taking tykerb (or a placebo) in February. So far, zero side effects, so I'm probably on the placebo. But I'm feeling fine and hoping for at least another good 5 years.

Marianne

Audrey · 03-23-2007, 12:22 PM

Erin, I was diagnosed in July 2001 Stage III with Her2+ BC--my tumor was huge--15cm (did not show up on mammogram or ultrasound--turned out to be like a flat, winding snake instead of a big grapefruit)- we only found it because I was experiencing a bloody nipple discharge. Anyway, I had 11+ lymph nodes, was young (36) and pre-menopausal, all my prognostic indicators were "poor". I was sure this was the beginning of the end for me. BUT I entered a clinical trial for Herceptin (after A/C and weekly Taxol, plus radiation), had 52 weeks of Herceptin and have not had a recurrence! Will celebrate 6 years of survival this summer! I feel fine, see the onc. every six months and don't get scans anymore or anything. Don't lose hope, there are more and more of us survivors now! Don't look at the old survival stats.. For what it's worth, I still like to keep current on available treatments, etc., just in case it comes back...the fear of recurrence never really goes away, but it definitely lessens over time.

caya · 03-23-2007, 12:39 PM

Hi Erin and everyone,

I have to second what Jen (saleboat) has to say. None of the stats include long-term Herceptin use on early stagers etc.
From what I have read, Elizabeth Edwards was stage 3, 5+ nodes. Not sure of Her2 status. Yes, it is very sad her cancer has returned, like it is for every other woman out there.
But we have to be positive - the timing of your diagnosis ( and mine) is going to rewrite the stats - we will get herceptin, etc. Even my onc., tops in his field in North America, changed his mind from my initial meeting (Nov. 2006) from a "poorer prognosis" to a "much better prognosis" (Feb. 2007)when the HERA trials and really recent information about Herceptin came out in Dec. and Jan.
I am just reading Audrey's post - she's almost 6 years out, and was stage III - this is terrific!!! We will be there, in 5, 10, 15 years + - also I am hopeful for the women in stage IV who have Tykerb and other newer treatment options that even a year or two ago were not available.
And remember also that I believe the survivors who are out there, leading their lives, NED for awhile are not constantly looking in on this site or others, because they are living their cancer-free lives.

All the best,
Caya

Becky · 03-23-2007, 01:30 PM

I am over 2.5 years out and fine.

Secondly, I believe Elizabeth Edwards was NOT Her2+. However, she admits openly that she NEVER had a mammogram (was diagnosed at age 55) and NEVER did self exams. Her tumor could have been a gentle giant but might have been there for years and years shedding tumor cells all over the place.

My late aunt was this way. Discovered a lump and did NOTHING for 6 years and because it was there so long, her doctor wanted to watch it (after all - my aunt admitted her stupidity so how could it be cancer. If it was there so long, she would be dead). Two years later, it was biopsied as cancer and she had 19 affected nodes. This was 1991 and she was not tested for Her2 but how could it be (Her2 is too aggressive to hang 7 yrs and still be alive). She metted out to the bones and lungs and we lost her 4 years after true diagnosis. I believe Elizabeth Edwards was much the same but didn't do nothing and acted.

I believe we are on equal footing to the Her2 negative women due to Herceptin (and now Tykerb and other research just for us).

Stats are good - very good. Taxol is a fantastic drug in its own right for Her2+ tumors (regardless of hormone status). This drug was not used 5-6 years ago (as a rule). Dense dose (ups survival by 38%) started being used less than 4 years ago. The list goes on and on.

Smile and have a wonderful weekend.

LAURIE · 03-23-2007, 01:59 PM

Wow, you ladies have made my day!!!! I feel more inspired now than ever, ever, ever, since this "challenge" came my way. I am going to live and am excited to take on whatever challenge may face me in the future!!!! I have been contiplating adoption recently and passed it off because of my "challenge" and thought I was being selfish. Thinking that is was fair to my husband and my future child if I was not going to be around. But I am going to be around and even if it's cut shorter than most, my family and friends would of known the best wife, daughter, friend, neighbor and mother ever. Wow, that sounds like I am full of myself, but this site has really boosted my confidence today. Thank you all!! At least for today I am "queen of the world" (well at least in my neighborhood)

tricia keegan · 03-23-2007, 02:06 PM

Thank you! I found your reply both inspirational and hopeful.
Congrats to you and I hope many of us follow in your survivor
footsteps!

Mary Jo · 03-23-2007, 02:16 PM

I, too, feel encouraged by reading all the "success" stories. We need to hear those more often and that's one of the reasons this site is so often. The encouragement and support we offer one another is the best. Yes, recurrences occur, and we all feel bad BUT times are changing in the breast cancer world and we are on that band wagon now and can only hope for good things for all of us.

I was diagnosed in June of 2005. I had a 4.5 cm tumor, clear margins and 1 microscopic cell in 1st node (only 2 nodes removed). I received 4 dose dense A/C - 4 dose dense taxol along with herceptin every 3rd week. Also, 28 rads. I'm coming up on my 2 year anniversary and am doing super. My onc. says "You're perfect" Hahahaha - so glad my husband is sitting their when she says that. I've been trying to tell the man that for the past 28 years. Hahahahahahahahahahahahhahaha!

Hugs to my "sisters"

Mary Jo

P.S. Also, my sister's dog groomer, was her2neu positive ............I don't know all the "stats" on her but I do know she was stage 3. She is a 5 year survivor. She also took herceptin in a clinical trial.

ExpectAMiracle · 03-23-2007, 02:55 PM

It is great to hear some success stories! This is a scary disease and unfortunately, alot of what we hear is bad news, as the case with our sister, Elizabeth Edwards. I am so thankful to read these positive reports from some long term Her2+ survivors who have been blessed to use Herceptin during the course of their treatment. I go to the oncologist on Monday, 3/26, to discuss my chemo, which should begin in a few weeks. It is good to have this positive feedback before I start my chemo.

Blessings to all!

Erin · 03-23-2007, 04:59 PM

Thanks to all of you for the wonderful success stories! I was beginning to despair, but you have all helped me see that there is light at the end of this tunnel..even if I can't quite see it yet (lol) You are right, we will probably look back in 10 years and say "Wow, how lucky we were to have all the new treatments and drugs like Herceptin."

Thanks Ladies, for putting it back in perspective for me :-)

Andi · 03-23-2007, 06:34 PM

I have a very good friend that lives in my city who was Stage IIIC (as I was originally). She was involved in the herceptin trials and received the arm with herceptin taken with Taxol. She received A/C first, then !2 weekly Taxol/Herceptin and the rest of the herceptin year weekly. I believe she took tamoxifen for nearly 5 years and then switched to an AI andi is currently taking an AI, as she is again in a trial. She celebrated her 6th year since her diagnosis last November and is doing great. Hope this helps give you some positive insight, there are many success stories out there, think positive that you will be one of those.