So, can anyone tell me the truth

[Shannon]

So, the internet is a great resource of information, I am 33 that has been diagnosised with Stage 3 Breast Cancer, four lymphnodes positive... all this came from a lump I felt that the doctors said wasnt anything but a cyst, since the Mamagram was clear. I am really not bitter, although it sure seems that way. I am in my Taxol round of chemo with five more weeks and then 7 weeks of radiation on three spots.
I have been too strong at times through this, I think. I at first completely shocked at my disgnoses, and not being educated on the process, had a lumpectomy and a port put in. I must admit... I did the "why me" thing for a minute, then figured why not me, since I knew I was strong enough to get through this and at least five of my girlfriends would have chalked this up to a death sentence.

I am in the clinical trial for Herceptin... I am in the arm of standard treatment and observe. I would have been taken out of if I was in the arm of the clinical drug as I lost 10 points of heart damage from AC. I went in to see another Oncologist this week as my doctor is on vacation. Really nice guy, and was on the board of doctors who perscribed my treatment plan... so I asked him, seriously, is this working...
His response, we are giving you the most aggressive treatment, after this, it is out of our hands... what does that mean???
It is soooo difficult to find anyone out there outside of this board, in my local area, that is HER2Neu positive. Really, all you ladies that are long time survivors, is what I am looking to hear from. I go to a support group and I am the worst diagnosis... some ladies didnt require chemo or radiation. On one hand, I want the impossible saying after this, there will be no reoccurrance, on the other hand, I just want to know that I am not alone in this feeling.. which I know I am not!

[Terry]

Shannon, I can so much relate to your thoughts emotions that I could have written it myself.

I don't know if my response will be helpful to you, but I'll try. I am not a long time survivor, but a very happy survivor. I was diagnosed in 9/02 -- stage 2B with 1/12 positive lymph node. I was faithful in having my mammograms done every year starting at age 37 and at 42 they noticed increased calcifications but said "nothing to worry about". 6 months later I found a lump in my right breast in the shower. I also had a lumpectomy and a port installed. Received AC and then Taxol every week for 12 weeks, 38 radiation treatments and 52 weeks of Herceptin. My oncologist says the same thing "you've received the most aggressive treatment and there's nothing else we can do at this point". You too are receiving the best of treatments. He does not believe in scans, etc., he'd rather wait for any signs of symptoms. I'm ok with this as I don't believe it would make much difference if it happens to recur and we begin another regimen of treatment. In other words, I'm prepared that there could be a recurrence and will deal with it appropriately when the symptoms appear -- I am attuned to my body and watch for symptoms. I have improved my diet greatly, eat lots of fruits and vegetables (some organic), lots of fish (love sushi) little organic meats, and little organic dairy (milk and yogurt).

Other than this board, there is only 1 other person that I know personally (it is now 4 years later and she is doing well) that has been diagnosed HER2neu+ and therefor no one to really talk to on this subject. But I also feel that even if I were not Her2neu+ that my chances of recurrence would still be there.

It has been 2 years now and so far so good! As time goes by I continue to get less fearful. I think that because you are in the midst of treatment that you are constantly reminded of the cancer as well as not feeling well (I found the Taxol to be more taxing to my body than the AC -- uuuugh) and you too will feel more positive and strong when your treatment ends.

As you said, it takes a strong person to deal with tough times and difficult choices. And you are a strong person. There is a saying "People are like tea bags. You find out how strong they are when you put them in hot water". So, keep the faith, you are absolutely doing all the right things. Please try not to think of the "what if's" (I call it stinken thinken - ha ha) as they can drive you bonkers.

If you'd like to e-mail me, my address is tlg1051@aol.com

Take good care and I wish you positive thoughts.

[Ruth]

Dear Shannon,

I am only a year and a few months from diagnosis (age 36) and have been doing great. I know that you wanted to hear of long term survivors of HER2 +. My friend, Patti, is an 11 year survivor at age 29 with stage 3b (now she is 41). At the time, they did not have the Her2 neu test but they did test her for ER/PR - which she was negative. They are pretty sure she was HER 2 pos.
She has had no recurrances. Her chemo didn't even include one of the taxanes much less Herceptin. There are MANY long term survivors out there but I think that they tend not to frequent these sites...especially when their cancer diagnosis was over 5 years ago. I did a tax return this year of a two time BC survivor (6 years ago with 7 pos. lymphnodes & ER/PR-). She doesn't even have a computer thus would never post! I asked her what she did to change her life...her answer was as simple as laughing from stupid TV shows, doing what she wanted to do and living it up with her husband. They went on trips that she said they were going to save for when she retired. Those are two gals from my little town in GA.
It sounds as if you had a great regiment of chemotherapy. You may not need additional chemotherapy...and if some small chance you do there are still plenty out there for you to try.

I go to yoga every Monday for BC patients. I am the only one that had 10+/16 lymphnodes and HER2+. I am young and I wish that I had someone also like me but usually I am the one they look at with a "aww" expression. It's OK...I have taken the role that I may have started up with two strikes at bat but I certainly plan on hitting the home run. When I say home run - do I mean living until I'm 90? No, I mean that I am living my life to the fullest now. So that no matter what happens my life was a home run. No regrets, no missed opportunities and no long lengths of time where I think to myself "I wish I had done that, I wish that I said No, I wish that I spent more time doing the things I wanted to."

The truth you asked for is a question that none of us has the answer to. All of us are so completely different. There are people that on paper they should be cured and they die. There are people that should never make it a week, a month and they are here and doing fine. Then there are lots of folks in the middle, like me. I wish that my Dr. could tell me that he can cure me but that would be a lie. He did his part and the rest is really up to me.

Pray for the best. Have faith that your treatment is working for you. And most importantly live, live, live.

Peace, Ruth

[lauren]

i am going to tell you what i know, which isn't much...lol...and i am going to tell it to you straight, by which i mean, i tried not to actually "read" your post, so i am speaking to you objectively, as opposed to trying to make you feel better...

first of all, i am alive two years later, and i am feeling great (other than my mood swings, which you might be keeping up with on other posts). i was stage IIb with two positive nodes, very aggressive form of her2neu cancer, with lymphatic and vascular invasion. i was also hormone positive, pretty strongly on the progesterone side. i believe my cancer got started following a string of miscarriages (i have two kids, so no pity needed here...) because progesterone is very dominant in early pregnancy.

anyway, here is how i feel about it: i am THANKFUL that i had an aggressive form of cancer with positive lymph nodes. seriously, i really am. why? because it meant that my doctor took a SUPER AGGRESSIVE approach. after my double mastectomy, i got ac plus taxotere plus herceptin plus radiation plus ovary removal plus arimidex. if i had been stage 1, i would NOT have gotten a taxane. i would NOT have been eligible for herceptin. i have a friend who was six months ahead of me in diagnosis...her2neu positive, no nodes. she recurred a year ago. her treatment? taxotere and herceptin. how happy am i that i got the taxotere and herceptin in the adjuvant setting? VERY.

there are no guarantees. i have no idea what the future brings. but i am so thankful that i got the full-on treatment, and two years have gone by now!!!!! that is something, isn't it?? not super long term, but two full years after an aggressive cancer diagnosis and ned!!!!! that HAS to be a good thing!!!!!!!!!

keep doing whatever it is you are doing...keep on keeping on. laugh a lot. go to yoga. take long walks. breathe. and each day you wake up healthy IS a gift...even if you feel anxious and moody like i do!!!

lauren

[Annalise]

I have actually have read that pregnancy after breast cancer maybe a good thing due to the surge of progestrine. Progestrine is suppose to be a protective facture. From my understanding it is the surge of estrogen especially early on in the pregnancy that many Drs. are against pregnancy

[Rozebud]

I know what you mean Shannon. I am IIIC with 11+ nodes. I'm 34 and was dx'd while pg. I'm not saying stage 1 and 2 people don't recur, it's just that they have much better overall prognoses than we do, and you're right, it's hard to be in a support group of people where you are the worst case. I get my inspiration from this site....all these wonderful women who have mets and are confounding their doctors by being NED - shows me there is hope even if the news gets worse. I have met 3 separate people with 15+ nodes who are more than 5 years out and all doing great. My radiation oncologist told me he had a patient for lung cancer a few years back (in her 50s) who was diagnosed over 20 years ago with aggressive b/c and 34 nodes taken out - all positive - and she refused chemo (mast. and rads only) and 20 years later she had not had a recurrance! And that was without chemo (the lung cancer was unrelated).

Also....feel free to join us at the Young Survivor's Coalition site. Hang in there....I can SO relate to what you are going through.

[lauren]

annelise, with all due respect, i don't think ANY doctor would ever say that pregnancy is a GOOD thing for someone who has had breast cancer. Forgetting about the hormones for a moment, pregnancy is a HUGE burden on the body,and it can send the immune system into a tailspin (or not...but i would not want to flip that coin).

every one of my doctors has the opposite view of what you just said. my cancer was highly progesterone positive, and progesterone is what keeps the baby from being expelled from your body in the first weeks of pregnancy. LOTS of progesterone. If you check with a fertility doctor, they monitor one thing primarily in early pregnancy: the increase in PROGESTERONE. And that increase is EXPONENTIAL in the first weeks. Estrogen doesn't start to increase drastically until later on in pregnancy. In either case, progesterone is as deadly as estrogen in hormone-positive patients. Pr and ER are considered the same for purposes of determining a patient's response to hormone treatment.

lauren

[Kathy from Ohio]

Shannon
I can be of encouragement to you. I was originally dx. 20 years ago at age 40--12 of 24 nodes involved--3 young children--very long and agressive chemo--not a good prognosis. I had a healthy life for 19 years and just recurred a year and a half ago. I'm doing well with Herceptin and Zolodex at this time and am so grateful! I never imagined I would be able to see 3 beautiful grandchildren and enjoy all these years! It can happen for you too!
Kathy

[Shannon]

I want to thank soooo many of you kind ladies for your thoughts and stories that I relate to. I know I am not the only one out there that feels this way and feel so fortunate that I am having this cancer in a time that is ok to talk about it and have the resources (computers) to do it on such a grand scale.
I have my moments... some more intense then others. I have lived what I thought was a normal life, but now see that it was full of stresses and worries. I look forward to the end of treatment where I can begin a new way of life.
Thanks for reminding me that there is hope after all of this, there are days I just need a little kick in the butt....

[Ruth]

Kathy,

You are a HUGE encouragement to me also!
Thank you, thank you for posting!
Ruth