HealingWell
Search Close Search
☰

HER2 Positive

Support Forums
>
Breast Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/28/2006 7:31 PM (GMT 0)
I swear, the original cancer diagnosis was easier to take than this.  I read about you guys living with ports and weekly treatments like you're going to the grocery store.  I'm not that strong...I can't take this.

I think I'm going to go the "enjoy the time I have left" route and screw the rest of the treatment.

Pam

 

Posted 4/28/2006 8:08 PM (GMT 0)
Pam - no one can tell you what to do with your life, but please take a deep breath, pour yourself something to drink, and try to calm yourself. Although I was not Her2 positive, a friend was, and she was also very upset by that particular diagnosis. However, with the drug Herceptin, there is a VERY good "cure" rate!!

Also, living with a port is not a difficult thing. I had one because I have a 10 month old daughter, so I couldnt get a pick line, and even before my diagnosis, my veins were hard to hit. The port insertion and excision were easy operations - I didnt even need to go under for them. And once the incision was healed, I barely felt it. Unfortunately, because I am (oops, was) small chested, it was very noticeable. So as soon as I was done chemo, I had it taken out.

I will not say that chemo is easy, but, it was not as difficult as I thought it was going to be. There are alot of medications to help with the side effects, and life is still liveable throughout the treatments! Please ask us questions about our treatments - knowledege is power - and you may just find out that you CAN do this, and that you ARE strong. And if you are not, we are here for you!! Please let us help you.

Love
Chantry
Posted 4/28/2006 11:08 PM (GMT 0)

Hi Pam: As Chantry said, take a deep breath and try to relax. I know how frightened you are. Each day you are being told things that scare the hell out of you. You don't know what to think. You don't know what to expect. The realization that your life is going to change dramatically is a huge blow. I think that the hardest thing for me was knowing that I had a disease and that I had to face my own mortality. I had never really been sick. You read the posts from each of us and we sound relaxed and trusting and sure of ourselves and what we face each day. Trust me when I tell you that each of us has felt the very same way that you are right now. We wondered if going thru treatments, losing our hair, losing one or both breasts was worth it. All I can tell you is that it IS worth it. You may have to change your life for 6 months to a year but at the end of all of the treatments, you will see that it was a fight that you fought and won!

Allow yourself to feel all of the emotions and don't be afraid of them. You will laugh and cry and scream and ask "why me"? This is normal. Educate yourself. Find a support group. It is always important to have someone close that you can talk to that has experienced what you are going thru. Don't be afraid to call your dr and nurses and ask questions. Education will help you take away some of your fears.

No matter what any of us tell you, in the end, it is YOUR decision and yours alone. We are here for you. Please let us help you.

Hugs..Deb

Posted 4/29/2006 3:58 AM (GMT 0)
Pam,I am also Her2possitive and im on Tamoxifan and had my ovaries removed.Dont give up!you have to fight this.Its hard to stay possitive right now but once everything settles down keep a possitive mind and pray that God will carry you through this journey,There is a light at the end of the tunnel.  Your in my Prayers,   Tammy
Posted 4/29/2006 4:48 PM (GMT 0)
Blondy,
I have'nt been to this board in a couple of months, but seen your post and wanted to give you some encouragement. When I was dxed last yr.(her2+++ also) I felt just like you. All the information on her2 was dim and scary. By the time I finished AC, herceptin had become available to those of us who were early stage. March 28th marked my one yr. anniversary. I have 6 more herceptin tx to go. While AC and taxol were no trip to the grocery store- herceptin has just been an inconveinence (going to the appt's) for me. There is a board her2support.org that has alot of information on her2+++ breast cancer. There are some scary topic's on that board , but there are also women who are NED for many yrs. now. Studies are now coming out that say with herceptin her2's actually have a better prognosis. BTW- I have made it this far without a port. I have to admit I was definately a coward when I was diagnosed, but with time I have gained an inner strength I did not know I had. I had to tell myself I can beat this over and over. Life is uncertain no matter what road we take-make the decision that's best for you.
((hugs))
Michelle
Posted 4/29/2006 11:32 PM (GMT 0)

Blondy- I was told my cancer was 3+++ for her2neu. I was er-/pr- so I couldn't take tamoxifen. When alot of tumors are measured in millimeters, mine was 4.5 cm.  I had 5 of 49 lymph nodes positive when i *thought* we caught it *early*. My pathology report was HORRIFIC, with every thing measuring to the worst extreme (necrosis, etc.).  I was told my chances of surviving 5 years was 50/50 (and this was by the Head of Breast Oncology at Duke University). 

Guess what?  I just passed the 5-yr mark, no sign of a recurrance (knock on WOOD!) and I feel great.  YOU CAN DO IT.  Did you hear me? Did you hear all the posts above mine? YOU CAN DO IT!!! Use us as a resource; we know you are scared, and we know the thoughts that go thru your mind at your darkest moments.  But you can fight...I am sure there are alot or people you want to live for. Just think, if you get a good treatment plan together and even get 5 years out of it, where will cancer treatment be by then?  Herceptin is a AWESOME, POWERFUL drug, and I KNOW that is why I am here today.

Please don't give up.... you are as strong as you want to be.  Lean on us, we can help.

Many hugs,

Stefanie 

Posted 4/30/2006 10:20 PM (GMT 0)
Well, I'm not quite off the ledge, but I've taken a step back from the ledge, and now I have some questions.

From what I've read, there are two types of tests that determine your HER2 status.  Since the FISH test must be 3+, I'll assume that I had the other one, because my score was 2.1, and my surgeon said anything over 2 is positive.  I was trying to research if there was a difference in prognosis with a "weak positive", and haven't been able to find anything.  I DID find something that said if you get a 2+ on the "other" method of testing, then you should retest with the FISH test to ensure the result, so that will definitely be my first step.  My surgeon said that this is really the area to speak to my oncologist about, and I have an appointment on Tuesday, so I want to be armed with questions.

Thanks,

Pam

Posted 4/30/2006 11:48 PM (GMT 0)
Hi, Blondy, my name is Judy and I have some experience with both of these tests. I had the IHC first - everyone does because this is the cheapest test and only 25% of bc patients test positive for HER2. It was +++ so I volunteered for a Herceptin study which required a FISH test in order to qualify. I did not qualify for the Herceptin study because my FISH did not show that I had "gene replication". So be sure to ask what a positive FISH means because I believe it is positive if it finds the aberant gene replicating itself way too much. Oh, and my first med onc said that approx 10% of the IHC's who tested at +++ are actually negative for gene replication.

Judy

Post Edited (JUJU8872) : 4/30/2006 6:02:33 PM (GMT-6)

Posted 5/1/2006 1:37 AM (GMT 0)
Hi Pam....I think mine was a 2 out of 4, not sure what kind of testing they did. I was diagnosed at age 30 in November 1999, and back "then", Herceptin was not available for early (I was stage IIA, with a 2.5 cm tumor and it was a grade III) diagnoses, bit only for metastatic. My surgeon's partner said it was considered positive but my onc said it was not, only a 3 or 4 was positive...no herceptin for me, but I did 4 rounds of AC chemo and had my last chemo in April 2000.

This time is THE most overhwelming and frightening that a woman can experience. Each day you are close to beating this and you have one more day to let the news sink in, one day farther off the ledge....one day you will wake up and realize that you made it one day without crying....and time will make that easier. You CAN do this.... we'll help you...

L&H,
Lori
Posted 5/1/2006 2:04 AM (GMT 0)

Hi, Pam!

I don't post as often as I should, but I, too am HER2 +3. And I had lymph nodes involved and I was 34 when I was DXed in 2003, so I thought at the time, "hoo boy, that's it for me" (actually what I thought was much darker and contained more swear words but this is all that is acceptable to print here). I went through chemo first (to try to shrink my rather large cancer) and had AC and Taxol....and it DID shrink it to almost nothing so the chemo DOES work. Then I had surgery and rads. 

They weren't given Herceptin to people like me at the time, so I got called back a year ago by my oncologist who urged me to take Herceptin. I am happy to say that after a whole year on Herceptin I have my last treatment of it on May 12! That's 3 years of survivorship and I'm still going (like the Engergizer bunny but I take way more naps).

It's a horrible thing to go through, no sugar coating it, and there will be days when you think you can't do it but you CAN get through it and you WILL. In fact, you will surprize yourself with how strong you really are.

And you've got all of us rooting for you, too!

Love,

Erin

 ps: I did not have a port and my advice is GET the port. Boy, I wish I had had one!


Posted 5/1/2006 4:35 AM (GMT 0)
Pam, as everone else has said, you can do this. I was diagnosed March 05, Stage III, Her2+, ER-/PR-, 5 out of 28 nodes positive. Had mast, chemo, rads, and am still on weekly Herceptin until August. Herceptin is a Wonderful drug which will change the "poor prognosis" associated with Her2+ cancers.  I had to quit reading all the books, because there were not many surviver stories! At 45 with a 18 year old son, and 15 year old daughter, and new marriage, I have a lot to live for. The port placement was not a problem, and you wont feel it (unless you push on it of course) once it heals. The pre treatment (chemo) meds work very well, and if not, there are many to try until they do. I have to say I had a very easy time with the ac/taxol treatment. I ate well, took vitamins (except for day before, day of, and day after tx), antioxidents, etc. The book "Beating Cancer with Nutrition" by Patrick Quillin, has a great deal of information on the subject. I only had one delay for low wbc, but with the help of neulasta ( shots to boost wbc production) there were no other setbacks. Of course my energy level is not as high as it once was, and I gained 35lbs, which now I'm working to take off, before my reconstruction this June, but things are looking up. You WILL get to this point where going for treatment is like going to the "grocery store", just like the rest of us! I wish you well, and will keep you in my prayers (like all of us who are dealing with the big C). God Bless.
Posted 5/1/2006 4:53 AM (GMT 0)
PS. I forgot to include in my last post that the fear, anger, anxiety, etc. is all normal. Waking up in the middle of the night in tears, scared, wondering 'why me" is something most of us feel. It takes time to decide to cope, fight, and not give up. I am in tx with women who have had 3-6 different cancers (mets) but get treatment and survive. Many women live with cancer and have long productive lives. This is not the "death sentence" of the past. I believe attitude has a great deal to do with survival etc. My faith is strong, and once I got past the "how could this happen to me", I know God is with me and will get me through this. It has been quite a year, but I have met wonderful caring people, developed deeper relationships and look forward to "cheering" other's on. YOU WILL SURVIVE!

✚ New Topic ✚ Reply