Stage I, but Her2 pos, ER-/PR- AM I DOOMED???

bluewillow

Hi mke,

I'm glad to hear you're doing very well!  And yep, your tx sounds just like mine! (and I am 51, btw, not a real young chicken!) I love the way you put things in your post (and oh, the way you describe my dr to a "t"! )  Thanks for the encouragement!  I appreciate your perspective and you and the other ladies have helped me so much!  Like you said, bc just thoroughly stinks, but so does heart disease, diabetes, and so many other chronic illnesses that folks are walking around battling.  I do need to quit reading all the stats and outdated info and focus on all the great new breakthroughs for all of us!!

Thanks again and take care!

Mary Jo

bluewillow

Hi kimf,

I'm so glad you stopped in to give your great advice and insight!  Congratulations on being NED and, with your great attitude, you will stay that way! I just started my chemo last Monday, am doing very well so far, have quite a ways to go but I intend to keep the positive messages such as yours in my heart and mind to get me through this!!  I feel there is great hope for us with the new drugs and updated info, and with that I rest easier these days...

Take care and best wishes!

Mary Jo

Valsul

Just remember that when the clinical trials were reported on for Herceptin the doc who gave the presentation had tears in her eyes when she said it had not only fulfilled all their expectations but had exceeded their wildest dreams.  Thank God for Herceptin.

Just let me say it's no walk in the park, but IS doable just taking it a day at a time through chemo.  My SIL who is a doctor in cancer research told me when he saw my dx that it wasn't a death sentence.

He said that the mast had removed the tumour, the chemo would nuke the system, the rads nuke the local area and Herceptin catch the strays.   Go nuke 'em, Bluewillow.

Valerie S

bluewillow

Hey Valerie,

You are such a dear to share your insights, as well as your SIL's wisdom!  And to think I am paying my doctor and he's not giving me that kind of comfort!   I am so thankful for this forum.

I know that I can do this and get through it, as long as I have all this hope!!!

Thank you and take care!

Mary Jo

meg160

Hi Everyone,

I have been dx with BC her2t er- pr- grade three and stage 2B

I had taxotere and hercepton to shrink tumor before lumpectomy. had to repeat lumpectomy due to not clear margins, second surgery was clear. one week after surgery i had carboplatin, due to a bad reaction, my md decided on gemsar 4 doses and a maintenance dose hercepton every three weeks for one year, rads 6weeks is what i am up to now, then more chemo after that, i don't know what kind yet. i'm a little nervous that i have not seen no one on the board mention gemsar

Jenniferz

Hi Bluewillow.

You are not doomed.  I am also er-/pr-/her2+, and have been NED for nearly 18 months...not nearly as long as some, but I'm still here, kicking anyway!  I plan to stick around for another 100 yrs. just to irritate my family.  I had a unilateral mastectomy, was Stage 1a, clear margins, neg. nodes.  I did NOT receive rads nor chemo, and my onc. didn't give me herceptin because he said though aggressive, was too small.  However, he did put me on Femera "because it catches all tumors" (his words not mine).  Though not entirely trusting of this man, I remain hopeful, and move on day to day.  Did feel doomed, but not any more! You have received more treatment than I did, so I would say your are  looking pretty good!

EachDay

Mary Jo, I am so pleased to hear that you no longer have that sense of "doom" hanging over your head!!   You are moving forward and I am so pleased for you that this is happening.

bluewillow

Hi EachDay,

Yes, thank you, I am doing much better than before, and I can thank ladies like you and Jenniferz and Valerie and all the others who have given me such great hope and encouragement with the wonderful recent news of Herceptin and just plain positive thinking!!!  So far, I have sailed through my first chemo treatment in a way I never would have dreamed, and I'm hoping my next one (Mon, Oct. 1) is as easy.  I will beat this thing for sure now!!  I have just loved reading all the positive responses and am hanging on every word!  Thank you all ever so much and may each of you be very blessed!

Mary Jo

Anonymous

How you doing now Mary Jo?

I was stage 1 but the her2+++ really thru me for a loop and didn't realize how aggressive it could be.  But 2  years later, I am still here and so far so good.

Chemo and herceptin is doable.  Make sure you ask your onc for regular mugas and if you can do Herceptin in 3 week intervals. 

Ohbother

Hello BlueWillow,

I just saw your post.  I don't come here very often any more because as far as I'm concerned, I'm healed.  I come back every so often to check on my BC sisters and hear of any advances.

In Oct 2005 I was diagnosed with Stage IIB IDC w/ 3 + nodes AND vascular Invasion; Grade II ,    I am Her 2 Neu + and ER/PR positive.  The hormonal therapy has been very very rough but I am hanging in there.  I also recd Herceptin for 18 months.  I just celebrated my 2 year anniversary and intend this to be the 2nd of many more.  DO NOT LISTEN to statistics or some physicians.  I heard the "don't plan your funeral speech" also.  And I thought, "I won't if you won't"...

I have 3 children who need their Mom so  I did it all - Dose Dense A/C, Taxol followed by radiation; everything AND the kitchen sink. 

Hang in there.  Refuse to give up.  Live and Love your life.

Cydne

bluewillow

Hi Rocktobermom and Cydne!

I haven't been online much lately but glad I signed on to see your posts!  I am doing really well with the chemo-- not been sick beyond just a bit of queasiness here and there, and I have worked right through it all!  Of course I am bald, but that's just less time in front of the mirror    I have my third A/C tomorrow and can't believe how time has flown by so far!  I am so thankful to read your encouraging stories and I do intend to beat this thing and fight it every day!  Cydne, I love your attitude and hope I have the same outlook on this thing!  R'mom, I'm really glad you're doing well and I'm sure we'll all still be here for a long, long time to come!  I have a grandbaby due in January and plan to see him or her have babies!!  I will take your advice about the regular mugas and the 3-wk Herceptin tx.  My attitude has improved even more since my last chemo tx, when I had a really good talk with the nurse practitioner at the cancer center.  I told her I felt like my doctor had not been very encouraging and of course she couldn't bad-mouth the good dr., but she did explain in a very tactful way that he just works with facts and that's it, so she pulled my chart and proceeded to give me the most encouraging news I've had yet-- that my survival rate even without the chemo and just radiation is something like 97 percent, and that's after factoring everything else in like the her2+ thing.  SO, whatever happens in my future, it won't be because I haven't fought it tooth and nail!  I plan to enjoy each and every day to the fullest, which we should all do anyway, cancer or not.  Thanks for the great advice, ladies and do take care and hang in there!

Mary Jo

mthomp2020

I was Stage IV at diagnosis, ER/PR-, HER2 +.  I had 6 tx of A/C, now starting on Taxol/herceptin.

HER2+ cancer responds better than non-HER2+ to Adriamyacin and Taxol, according to recent studies.  I had excellent results from A/C - my onc looked like he was going to do a happy dance! 

I know I read a post from someone on this board who is stage IV HER2+ that's still around after 10 years on Herceptin.  If you're stage I, then there's an excellent chance that it's going to kick the ass of any cancer cells the surgery doesn't get. 

Just hang in there!  I'm 54 years old, just a little older than you.  For all I know, I might be around to collect Social Security!  I don't feel doomed at all.  I just take things one day at a time, and enjoy doing the things I love doing.  Your doc sounds like a doom and gloom kind of guy!  HER2 + bc seems to be closer to an actual out and out cure than any other type, since it's the only bc that actually has targeted therapy. 

seawolfe

Wow - your doc isnt much on the people skills is he?

I had a real similar dx to you, but 5 years ago us Her2+ people didnt get Herceptin unless it was Stage 3 or higher   I had the luck to land on a clinical trial arm that included Herceptin (Taxotere, Carboplatin + Herceptin).

Im coming up on  (quick peek at my profile because its been soooo long ) my 5th year of dancing with NED.  And I feel fine! 

edit 'cause its profile and not sig line 

saluki

Wow--Sea Wolf- Seeing you posting today brought a smile to my face. So

glad you are doing well and I know from your photos that you're living

every minute of life.

Mary Jo--Was this an appointment with your surgeon?  If so, that's the way most of them are.  You don't need his bedside manner---Just his skill.  

Most of them stay within they're own field and doubt like to venture or comment on the oncologist's area of expertise. As a result they can be very curt and appear even nasty.

From what you describe you have every reason to be optimistic.  In all the latest research you have the type  of BC that is the most responsive

to chemo---and you are Her2+--thats great.

And, the fact that they are bringing out all the big guns early

should give you some reassurance.  As scary as it sounds, now that your chemo is underway I think you'll feel better, becoming proactive and seeing all the longterm survivors with your profile.

Take care,

Susie 

Shirlann

I sure has heck hope not!  I am a triple negative and 9 years NED.

I have no intention of dying anytime soon.  I expect to be in a rest home calling a sweet nurse "mama" for the last ten years of my life.

Hugs, Shirlann

KathyL

Anybody else besides me and JenniferZ that has not had chemo for this type of cancer??  Just curious how others are doing with that situation...

bluewillow

Hey mthomp, seawolfe,saluki,and shirlann-- thanks so much for your encouragement!! Your stories are just what I need to hear!  Yes, my doc is a gloom type guy, but like you said, saluki, I just need his skills, not his bedside manner.  I have gotten so much needed encouragement from the nurses, and they are the ones that really "see" the results in their patients.  Mthomp, I'm so glad to hear about your excellent results with the same type chemo I'm having-- thank you and best wishes to you!  Seawolfe, glad you're doing so well and how awesome that you had to check your profile!!!  And Shirlann, you're a dear and so funny-- yep, we'll be around to ring our nurse's bell all we need to!  Thanks again and I feel so much more optimistic, thanks to all you wonderful ladies!

Hugs and Love,

from Mary Jo 

bluewillow

hoping to bump this up for others

Berea

Dear Blu Willow, I am nu2 this post, Her2nu + to be exact, that was a little cancer humor there......and er-/pr- dx 5/07 2.2cm tumor no nodes involved, skin saver mastectomy, 4 rounds chemo done, herceptin for next 8 months.  Had horrible reaction to chemo, you are very lucky.  I have never even considered the negatives associated with this type of cancer; all types are negative to me, but given size of your tumor and other factors, you have every darn reason to survive until you are ancient.  I simply will not allow it to enter my total consciousness.  My second opinion oncologist concurs that I will survive; my friend she is also treating who has had bone and tissue reoccurrences may not be so lucky, but even she has not and will not give up.  Attitude is everything in my opinion, and as I watch my dear friend battle her demons, I know that is what keeps her alive.  I swore at chemo and cursed it and I am not sure I could take it again if I had to, but I know it and herceptin can change the outcome.  We are all in each others thoughts here, so go with God however you see that and get well.

bluewillow

Hey there Berea,

Thanks so much for your encouraging words!  You have made me feel so much more hopeful!  I hope I can be as strong as you and not let the negative thoughts creep back into my mind.  I am sorry to hear that you had a bad reaction to the chemo (thank goodness it's over for you), but so glad to hear of your 0 node involvement and your great prognosis too!!  How are you doing on the Herceptin?

It really helps me to hear what others' oncologists have to say- it gives me great hope for growing old!  And I thank God for the Herceptin and for His guidance and the strength he gives me!

Take care and the best to you,

Mary Jo 

rmrm10

hello, I just got back final path report and I am HER2+.. which I wasnt expecting. I have a 3 cm cluster (invasive ductal) and I do not want chemo.  I am hoping a lumpectomy and radiation will do it, maybe herceptin? anyone who has this or knows about it.. please I take all advice , I am afraid.

bluewillow

Hi rmrm10,

I am happy to give you my advice, but I wish you well regardless of your decision.   Here's my story:

I had a lumpectomy July 26 of '07 and re-excision on Aug. 20 w/clean margins, clear nodes.  Even though the surgery got all the cancer, my dr. recommended chemo as a precaution for "any rogue cancer cells floating around".  He compared it with weed seeds lurking around in a garden ready to sprout up.   Not the summer that I had expected to have...

I am currently taking chemotherapy, have completed 4 dose dense Adriamycin and Cytoxan, am now taking weekly Taxol with 8 more treatments to go (also Herceptin), continue Herceptin for one year, then onto radiation and should be done with everything in April '08. Time has truly flown by since all this rollercoaster ride started back in June of '07! Other than hair loss, which has been no huge deal for me because I know it will grow back soon, I have very minimal side effects, no nausea or vomiting at all, just occasional queasiness with the A/C, and only a bit of tiredness with the Taxol.  I have worked every day except treatment days, gone on business trips, driven 4 hours to visit my daughter, dove hunted with my husband, etc., and carried on my normal life during chemo.  For me, and a lot of others, chemo is doable, tolerable, and manageable (tho no one really "wants" it, it's not the worse thing in the world) I realize others might not be so lucky, but what I am trying to say is:  I know you're scared-- so was I, I was terrified when I found out I had to have chemo, but truly it hasn't been as bad as all the awful things I heard and read about. I think you can read in my earlier posts how scared silly I was.  I still worry, but not like I used to.

Don't take a chance with your health.  I know there are side effects to the chemo, but regret from not taking it would be a much worse side effect for me to deal with, because I would worry incessantly that I'd made the wrong decision, but that's just me.  Everyone is different, and this is just my experience.  I, as well as many others ladies here, do know Herceptin is a miracle drug for us HER2+'ers and a huge breakthrough in breast cancer treatment, but I'm not sure if they give Herceptin alone without chemo... maybe someone else can clarify that.

Like I said, I wish you the best and I hope I haven't sounded preachy because that's not my intent, but maybe this will help you in your decision. Hang in there-- you will be fine!  PM me anytime if I can help further!

Good luck to you!

Mary Jo 

nitewind

Hi Rmrm, I'm in total agreement with MaryJo. I had my lumpectomy in July of '06. It was 2cm  no lymph node involvement but Her2+++. I struggled with the chemo decision for about a month before I came to the conclusion that I didn't want to take a chance and do nothing. I had the A/C chemo 4 doses, followed by Taxotere ( I had three of them) and started Herceptin. I will get my last infusion of Herceptin on Dec 7th, that will make one year of taking it.

The chemo was no picnic but it was very doable! I had heard so many horror stories and that's why I was so panicky. It wasn't near as bad as I thought it would be. As far as nausea, your doctor will give you meds for that and they do work. Yes, you will lose your hair, but trust me, it does grow back, (I've been wigless for about 5 monthes.)

Whatever decision you make is yours but please don't be scared away because of fear of the unknown. That's truly the worst part, not knowing what to expect.

Good luck with your decision and please keep us posted.

Hugs

Susan

bluewillow

Susan,

You made a great point that I left out about the fear of the unknown being the worst part-- how true that is!

Congratulations on finishing your one year of Herceptin soon!  Have you had any problems with the Herceptin, our wonder drug?  I haven't so far.  And how long after you finished chemo did it take for your hair to grow back?  My last Taxol chemo is Jan. 28. My husband and I are planning on a trip out to the Northwest in May, and I hope I can leave my scarves and hats out of my suitcase (more room for souvenirs!) although no hair makes for a fast getaway in the mornings!

Good wishes to you! 

Mary Jo 

nitewind

Mary Jo, I finished my Taxotere in December of last year but still received the herceptin. Really no side effects to speak of. My hair started growing back before I finished the taxotere, I would say it was about May or June that I started going out without a wig. Just used some gel and kinda spiked it. Seems like the growing has really slowed down and I'm impatiently waiting for it to speed up.

Good luck with yours.

Susan

mimi1030

I agree with everyone, do all you can now.  3 years ago my mom had DCIS with a 4mm and .5mm invasion so that made her Stage 1.  Her2 +++ very aggressive, she did 4 rounds of A/C although no herceptin because you had to have mets to get it then.  They told her a 5% chance of reoccurrence, said she would live her life out and probably never have to deal with this again being the small amount of invasiveness.  Yeah right!  Today she is Stage 4 with extensive mets to bones and liver.  So now she is back on chemo and herceptin now....but I would do all you can to reduce your chances although it didn't seem to work for my mom but everyone is different.  My mom's liver enzymes finally went to normal again so the Taxol/Herceptin/Zometa combo hopefully is doing its job.  She is in no pain and is not sick whatsoever not even with chemo.

Good luck to everyone,

Michelle

mimi1030

Oh and mom had complete mastectomy with SNB negative. 

Carolina59

rmrm10,



Did you mean a 3mm tumor? If you have a 3cm tumor, I think they usually always recommend chemo. And my onc. said they will not give Herceptin without chemo. I didn't want chemo either (who does?), but I'm glad I hit the cancer as hard as I could (except didn't need radiation) in the beginning. I hope I won't ever have to deal with it again.



Best,

Carolina

Jenniferz

AFter 18 months, I finally got may hands on my path. report.  My tumors were ICD-0.3 cm., and DCIS - 0.2 cm. From what I read, researched, and understand, it goes back to the size of the tumor, and as you can see---I am no where NEAR 1 cm. I also found that I am er/pr POSTIVE, rather than negative.  Why I was told and lead to believe differently for this long is beyond me.  I am greatful for the fact that this "dr." (if you want to call him that) put me on Femara as a preventative. I was going to ask the new onc. in Jan. if I could come off, since up until now I thought that I was negative.  Forget that!!

 From what I can find and research, is that Herceptin is usually not given without chemo. Since I had a maste., and tumors were so tiny, I didn't qualify. I have spent the best of the last two weeks trying to see if I fit in ANYWHERE with the drug, but I don't think so. It's 18 months into this game.  I think you have to have Herceptin within a year of dx, right?

I will be ok.  I have to look forward, and know that I am doing all I can do with yearly mammo's, self-exams, 6 months checkups, and Femara.  I can't look back. I can't worry about what is coming down the road because of one scary neuron. Can't. Won't. What is---is. And the same for what is coming. I will have my fists up, ready for what comes next. So far, I have kicked cancer to the curb.  Next move is to kick it  down the road.  I will know in June if that has taken place.

jay66

I had a left mastectomy with dcis of 2cm and idc of 1.8cm they took 7 nodes, found two begin lumps but vascular invasion. What stage does this make me? I'm er- /pr- and her2+++. There was no lump just a mass, finding multifocal cancer in the breast. Clear margins to the chest wall. I awlays thought I was stage 1, is this so?