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First Post: What! Why? Now Chemo?? QUESTIONS

GranMaNana
Posts: 2
Joined: Jul 2009

Hi Everyone,
This is the first discussion board I've been on since being diagnosed with breast cancer the last part of May. Since then I've had a radical mastecomy (my choice on second breast...very agressive cancer). Results after mastecomies were good...at least I thought so; Nothing found in lymphnodes, Stage One Breast Cancer, said they got it all! No need for radiation (which is why I opted out on the lumpectomy). Drains are taking their sweet time,large hematoma during surgery is still draining old blood from a vary gigantic bruise that covered over half of my body from the chest down. Still, until two days ago, I thought I was doing just fine.
Then I met with the Oncologist for the first time.
I was so happy because I was abke ti get in with one of the top Oncologists in the area. Recommended everywhere...and I felt "safe" for the first time. His visit lasted over two hours of "one on one". (my husband was there also, listening).
The long and short of it is: He wants me to have chemotherapy! Because I have a very agressive form of cancer...rates a 9 in agressiveness...HER-2 Proteine...he wants me to have "6 cycles of three weeks with Taxotere carboplatin and Herceptin, then complete a full course of Herceptin over 12 months. After the first 18 weeks of treatment with chemo, he would start me on Femara or armidex for probably ten years". He made it very clear that I had a 30% chance of getting cancer again during the next ten years (which would be incurable) WITHOUT the Herceptin, and a 10% chance WITH it. He also laid out the possible bad side effects on the heart and neuropathy in hands and feet with Herceptin.
I am soo depressed and confused now. It seemed clear what I had to do from the beginning...but not now.
Without asking anyone for their advice on whether to go head with the chemo and Herceptin (IF! insurance will cover it) or refuse it, can someone please tell me if I'm wrong in thinking the Herceptin is "optional" because, as he described it, Herceptin is a"VACINE" against Cancer and is therefore a "preventive" measure instead of a "neccesary" measure with possibly major side effects...and if I absolutely need it or not?
I'm at absolutely at rock bottom for the first time. I haven't been this down since the diagnoses. If anyone can help me understand this, I would REEEEEEELY! appreciate it.
I hope to hear from someone soon...they've already booked the surgery for the Port and 1st day of chemo and I'm not completely sure I want or need it.
Hoping for some clarity.
Thank you in advance for anything you have to say,
Sincerely,
Nancy

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

Welcome, Nancy. I'm sorry you are going through all this confusion and fear. Unfortunately, it comes with the territory -- at least at first. I have a somewhat similar situation to yours. I am not HER2 positive, but my tumor was also 9 out of 9 on the aggressive scale. My survival chances are also similar to yours, except that I cannot get my rate down to 10% because Herceptin won't work on me. Herceptin is a sort of miracle drug for HER2 positive ladies. Before it became standard therapy, HER2 was considered a poor prognosis cancer. Not so anymore. I know it doesn't feel like it, but you're lucky to have no node involvement (very, very good news) and a small tumor. I am stage 2a, so a little larger than yours. My opinion is that the chemo is worth the huge benefit you will be getting. Yes, there are side effects, but it is not a foregone conclusion that you will have them. Many people go through chemo without lasting side effects.

I know you are shell shocked right now. But these drugs (especially Herceptin) are powerful and designed especially to knock out an aggressive tumor like yours. Removing the cancer during surgery is great, but that is not an indication that it will not return. The worst thing about cancer is that it can recur, as you know. I would definitely get a second opinion on your regimen, but take a deep breath. Chemo is not the end of the world. In fact, it can be the beginning, giving you a second chance at a full and long life. A majority of the ladies here have been through chemo, including myself. You can do it, believe me. It's not as bad as it used to be.

I'm finished with chemo and radiation now and feeling great. These drugs have given me my life back, and I couldn't be more grateful. Ask any question. There are plenty of great women here to hold your hand through this. Let us know how you're doing.

Mimi

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Let us know Nancy what you decide to do. I know there are so many decisions to make in the treatment of our bc. But, like Mimi said, Herceptin is a very powerful drug to use to kill aggressive tumors like yours.

Kylez

sausageroll's picture
sausageroll
Posts: 415
Joined: Dec 2008

I can't give you advice Nancy. Everyone has to make their own choices. You have already said that you have a great oncologist...so you have to trust him/her and talk about your concerns. I had chemo,surgery,radiation and then avastin and femara. My feeling was that I was going to do everything I could to beat this.
I wish you luck..I know it is a difficult decision. Keep in touch.

tjhay's picture
tjhay
Posts: 655
Joined: Oct 2008

To error on the side of life, that is how i see it. Sausageroll is right it is your choice.
In the mean time let me give you somthing to think about. I notice that in handle is the word NANA does that mean your a grandmother, you have children? You already said you have a hubby. If it were I, would do everything I could so could enjoy every part of the lifes of my children and grandchildren. In fact I am doing that now. Life is so sweet, for me to do everything I can to insure that it is long enough to be apart of my love ones lifes is everything, I can deal with a little pain if it raies the chance of all that joy.
Just the way I see it
tjhay

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

You will make the right choice. Just get all of the facts and decide what is best for you.

Trust in your doctors.

Hugs,

Susie

CR1954's picture
CR1954
Posts: 1393
Joined: Jul 2008

I am on Herceptin. To my knowledge, it will not cause neuropathy and your onc will/should monitor your heart with EKG or MUGA scan during chemo. Otherwise, I have not experienced any side effects with Herceptin.

Herceptin is not a vaccine. It is a newer drug which controls the overexpression of the HER-2 protein. Without it, the protein will "attach" to cells, causing the possibility of recurrence. With Herceptin, the HER-2 protein cannot attach...or cannot attach nearly as easily.

Frankly, I think that Herceptin is the LEAST traumatic and the most effective treatment for HER-2 positive bc.

CR

mlmjt1
Posts: 540
Joined: Jul 2009

I was diagnosed in april and had bilateral mastectectomy for stage 3 cancer. Everything was localized in the right breast, cancer had gone to the sentinel node only no other lymphnodes involved but did go to the nipple which is why it was a stage 3. My cancer is aggressive as well. I decided to do the left breast as well due to fibrocystic breast disease. I want to do everything I can not to have to go thru this again...of course no guarantees.

AS far as chemo goes, since my cancer is aggressive so is my treatment. I am HER 2 positive which means that the tumors have too much her2 protein. The drug is supposed to bind to positive cancer cells and block them from dividing and growing..Its also supposed to attach to positive cancer cells and signal the bodys own immune system to destroy the cell.

There are side effects from the herceptin but I am glad to have it since I am not able to take any of the oral meds after my chemo. I just had cycle 3 of chemo and 1 more to go on adriamycin/cytoxan then will start taxol and herceptin. THe herceptin will continue for 1year every 3 wks and Im told that the side effects are minimal because it really is not chemo. Hair starts to grow back and so does your energy level. I am still working as a homecare nurse about 24 hours per week, I still walk, bike and I am 52. I feel like I have morning sickness about 2 days after chemo and I have to really work at eating and drinking but I am doing it. The secret is to find a balence between trying to live a normal life without doing too much and overtaxing yourself...

You have to make your own choice but I want everything available to me so if it does come back its not because I chose to refuse something.

There are others who have had this treatment who are done with it... I know they will post their experiences as well.

Best of luck...

We are all with you

Hugs
Linda t

aztec45's picture
aztec45
Posts: 757
Joined: Jul 2009

First let me welcome you to the site. This is the greatest network of people to surround yourself with if you have cancer.

No one can make you take chemo or make you do anything. I freaked when I heard the word "chemo". But when my onc told me that the cancer could return without it and return in my bones, blood, or brain, I said, "sign me up". I am like most people here have expressed, I want to live and I will do whatever it takes to fight this thing so I can live.

Good luck with your decision.

P

survivorbc09
Posts: 4376
Joined: Jun 2009

Hi! Just want to welcome you to the site also.

I didn't have chemo, so, I can't speak about that, but, I just want to wish you good luck!

This is a great site, full of lots of support and encouragement!

taleena's picture
taleena
Posts: 1612
Joined: May 2009

Nancy, I am so sorry that you had a need to join this board... but am very glad that you found us... As you can see already from just the responses you have received already, this is an amazing group of individauls who share both different and similar experiences but all of us encourage, support and care for each other... I have no experience with chemo, so I am of little help... I was dx in May and opted for a partial mastectomy and am still waiting on results to see what the rest of the treatment plan will be... I just wanted to welcome you, post as often as you want and need...

Gentle hugs to you...

~T

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Hi Nancy. I just want to say how sorry I am. You seem to be in a whirlwind right now.

I hope that we can help you thru this somehow.

We can offer encouragement, advice and support.

It can be overwhelming at times, and, that is when you come here, if need be.

Someone is always here 24/7 to help you.

Praying for you,

Kylez

Akiss4me's picture
Akiss4me
Posts: 2192
Joined: May 2009

Nancy, I too wanted to welcome you aboard. I also did not have chemo, but I was absolutely prepared if I had to. Instead, I am in Radiation (just finished week two) and I actually dreaded Rads way more than chemo because of side effects with my lung and heart. I dreaded a BC reoccurance above all else!! I am willing to go when the Lord is ready for me, but he apparently does not want me yet because he keeps putting amazing Doctors and people in my life that keep my life going. That is his doing, not mine!! So I will follow his lead and do what is suggested by my Doc's. They know what is best for me since this is their field, not mine. I hope you come to a decision that you are comfortable with. I for one believe it is a "neccessary" measure to "prevent" reoccurance any way we can. (:-) Pammy

tommaseena's picture
tommaseena
Posts: 1771
Joined: Feb 2009

What they and other said is true. Herceptin--this is how I was explained about it---it seeks out the protein gene HER2+ that is over expressed and strangles it so reoccurance is unlikely and stops the protein from over expressing itself.

I am HER2+ as well and I am so glad that there is Herceptin which targets this type of cancer.

I just watched the movie "Living Proof" the Herceptin story--awesome movie if any is interested.

Hugs to you,
Margo

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

Where can you get the "Living Proof" movie?

DianeBC's picture
DianeBC
Posts: 3886
Joined: Jun 2009

Jackie, that guy on here Bill, made copies and asked that if anyone wanted one, to let him know and he would send it to you. So, just PM him and he will send a copy to you probably.

Hugs,

Diane

tommaseena's picture
tommaseena
Posts: 1771
Joined: Feb 2009

See thread named Living Proof Movie.
Information is in that thread.

Margo

cathlinberreth01
Posts: 38
Joined: Jul 2009

Chemo works GREAT on the most aggressive cancers. There is always the chance that you have some floating cancer cells out in your body waiting to settle down and start growing.

Chemotherapy kills cancer cells during a certain stage of dividing. Aggressive cancers are dividing more than slow growing cells and so respond BETTER to chemotherapy.

Also Taxotere, carboplatin and Herceptin is easier to do than say, Adriamycin.

Hercpetin is NOT chemotherapy. It is an antibody that hooks on to your cancer cells and causes your body to kill the cancer itself. Herceptin doesn't cause you to lose your hair.

You would lose your hair from Taxotere and carboplatin though. But it would grow back while you completed your year with Herceptin.

Don't be afraid. I am taking Taxotere carboplatin and Herceptin right now. :)

And this was my second cancer diagnosis. I had non-Hodgkins lymphoma in 1995 and had to have 8 rounds of chemo and radiation to save my life.

It is worth it.

cathlinberreth01
Posts: 38
Joined: Jul 2009

Also I don't consider Herceptin preventitive because it does help your own body kill any floating cancer cells. I looked up recurrance rates with or without Herceptin when I started treatment. Herceptin caused something like a huge 40% decrease in recurrance compared to people who didn't take Herceptin.

Most people don't get the cardiomyopathy either. Though I got a fever after my infusion yesterday.

After doing the research, I am sold on Herceptin.

My advise to you is to do more research to make sure you are making the most informed decision possible combined with your gut.

Don't let your fear rule you though.

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Hi Nancy! Welcome to the site! I can't answer you specifically as I am not in the treatment you are, but, want you to know that many here are and will help you.

We will support and encourage you.

Please keep us updated on you!

Hugs,

Susie

tasha_111's picture
tasha_111
Posts: 2081
Joined: Oct 2008

I hope you are doing OK. I had different treatment to you, FEC + Taxotare. I am hoping you will decide to fight this with everything you have available.
The thought of Chemo freaked me out worst than the "You have cancer" speach from my doc...LOL
Anyway, I wish you all the best in your dilemma, I didn't decide on taking chemo until the morning of my first treatment, I was in such a state....Hugs to you Jxxxxxxxxxx

Noel's picture
Noel
Posts: 3100
Joined: Apr 2009

Just want to welcome you Nancy and to wish you good luck.

I didn't take chemo, but, many here have and will try and help you.

Noel :)

Paula1001's picture
Paula1001
Posts: 35
Joined: Jul 2009

Hi, Nancy.
Consider Herceptin your best friend right now. I started out at Stage 3A, 5 tumors, lymph node involvement, HER2+, estrogen+, and progesterone+. Responses above have already stated what I was going to. It's not bad. I've had no neuropathy. Trust your oncologist.

Good luck.
Paula

GranMaNana
Posts: 2
Joined: Jul 2009

I want to thank you sooooo much for your replies. As soon as I began reading your posts I heaved a big sigh of relief. Your kind advice has helped in such a wonderful way over the last couple of days as I've read and re-read your comments. From the moment I read the first post I felt a sense of peace settle over me, which only increased the more I read. I felt like I was finally in a place of "no conflict". It was so nice to be able to just read and not have to be on the defensive or offensive from people, tho they love me and have my best interests at heart, are very opinionated. Everyone seems to know someone who had this happen or knew someone who knew someone that said to watch out for this, to only go natural, to avoid chemo at all costs. It felt so good to hear from people, tho strangers, who at least knew what it felt like to be me right now, and who were actually going through the same thing that I'll be going through, right this minute.
I've done lots of research. I've read tons of books. And non of them brought me the peace of mind you guys did. THANK YOU.
I'm so glad I'm going to be among people like you guys as I go through this. You are all so POSITIVE minded, and really what is what we all need really, when it comes right down to it.
I'm glad I found CSN, and I hope that at some point I'll be able to make someone else feel as positive and at home as you have me.
Nancy

CR1954's picture
CR1954
Posts: 1393
Joined: Jul 2008

I'm also very glad that you found CSN & this board.

We all understand...the confusion, the fear. It's all so overwhelming and there is so much advice from well-meaning, but uninformed people. Those here have all "been there, done that" in some form or fashion, and we only want to help, as well as learn from each other.

Big hugs,

CR

survivorbc09
Posts: 4376
Joined: Jun 2009

Nancy, we are all here to help and support each other. We all have had different treatments, but, bc binds us together.

Hope to see you posting more!

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