I'm scared

[nitewind]

I don't know if I'm posting in the right place, but, I am so scared. I found the lump in my breast on Mothers day. Had the lumpectomy on July 7th. At that time, I was told I was cancer free and boy, was I celebrating. Since then, I've seen the oncologist, he says I am ER- and PR- and no nodes involved, but I am HER2+. I'm afraid that I'm having trouble digesting all of this. He wants me to have a port put in and have 8 chemo treatments, radiation, and herceptin. This is all so very frightening. I'm 55 years old, my husband ran when he heard the news (after 24 years) and I'm currently living with my sister and her husband. I have so many questions, like, is it fair to put my sister through all of this if I decide to follow the doctors orders. Should I follow his orders? What are my survival rates? I'm sorry if these sound dumb, I just feel so alone right now and I don't know where to turn. Please help

Susan

[Cathya]

Susan;

I quite understand you are scared.....it is very scarey to get this news. However, it is not a death sentence. Having said that I do believe you should follow your doctors advice. Regardless of the size of the tumor being Her2+ brings with it a higher risk than normal (I can't believe I'm using the word "normal" with cancer.....lol) of mets....that is cancer spreading. It is important that you fight and beat off this disease right up front. Is it fair to your sister....well I don't have a sister myself but I know that under the same circumstances any member of my family would step right in and be there for me. I am sure you are more worried about your sister than she is about you intruding on her life. Your husband however.......I hope you take him to the cleaners....what a piece of work!! Settle in, relax, don't sweat the small stuff and you and your sister and her family will all get through this just fine. It may be just the time you need to recover from your marriage as well.... Keep posting us......

Cathy

[Becky]

Dear Susan


You are in the right place. All the people on this board either have Her2+ breast cancer or are caring for someone who does. Half of us are ER/PR+ and the other half are like you (with negative hormone receptors).

Your prognosis will be excellent if you get the chemo, rads and herceptin - especially since you are node negative.

The treatment will not be a burden to your sister or her family. You will be more tired than usual but maybe not. I have had this same treatment as you (lumpectomy, chemo, rads, herceptin) and I honestly could have lived alone and taken care of myself if I didn't have family. I could also have driven myself to and from chemo as well (but its nice to have some company).

It is a shame about your husband. I am sorry about that.

If you have any questions, please let us know by posting and we will be there for you in this journey.

Kindest regards

Becky

[sarah]

Dear susan,
Sorry to hear you're joining this group but it's a great group full of great advice and support until like your lousy husband.
Definitely do the chemo, radiation and Herceptin. During chemo, you'll be tired and I'm amazed Becky could drive during it, I couldn't. Sometimes doctors think every week is easier on the body to take the chemo, some think every 3 weeks, talk that over with your doc. hope you've got a good oncologist and a sympathetic one. during chemo and radiation don't take vitamins or supplements - someone else on the site can tell you the few that are helpful and that you can take but mostly you don't want anything to fight the chemo.
You won't be a burden to your sister.
yours has been caught early so you'l be fine, just do everything they say.
be strong and stay positive,
sarah

[tousled1]

Susan,

I know the news you received is not what you wanted to hear but you have come to the right place. On this site you will get great support and acquire a wealth of information regarding various treatments. Most of the women on this site are HER2+ and can answer any of the questions you have. AS for the husband - different people react in different ways. Be thankful that you have a sister that you can count on.

[DeeUK]

Hi Susan,

Like you, my cancer was Er-, Pr-, node negative, and HER2+++.

I was diagnosed when I was 29, in July 2005.
Since then, I've had a lumpectomy, 6 rounds of FEC chemo, 6 weeks of radiotherapy, and am now coming up to my 6th (3 weekly) dose of Herceptin.

None of the treatments were as bad as I expeced them to be, though I was very scared about the unknown (aren't we all?).
In my experience so far, Herceptin has been very easy.. no side effects like I had with chemo (although I got away quite lightly with that, too).

I do still get scared about what the future may hold, but it's honestly not as bad as things were early on.. and I'm told it gets better!

Love & hugs,
Dee
xxx

[nitewind]

Thank you all, so much. Becky, it's nice to know that I can talk with someone who went thru the same process. I've read so many horror stories, that's why I'm hesitating about agreeing to anything. I keep hearing about being so sick and having "chemo brain" and herceptin brain". Good grief!! This sure isn't something to look forward to. My sister is afraid that if my white blood count goes down that I will be really receptive to infections, she's always picking up a bug and she's afraid that she will make me sick. I can understand, I would probably feel the same way. Again, thanks everyone for taking the time to respond. How do you feel about the port?

[VaMoonRise]

Dear Susan,

I am so sorry to hear that you have been diagnosed with HER2 breast cancer, I know how scared you must be but you are actually lucky, as crazy as that sounds, to be HER2 positive as there are so many great treatments out there now to treat this type of cancer.

I too was diagnosed at an early stage, I was diagnosed as DCIS stage "0" with no node involvement in March of 2004. I underwent a lumpectomy and radiation. As frightening as that was at the beginning I got through it without any complications or adverse side effects. Some days I was fatigued but that was the worst of it. I wish I had been offered chemotherapy and Herceptin at that time but I wasn't. It sounds like you have a wonderful oncologist who wants to be aggressive in attacking whatever cells may still be lingering in your body.

I would definitely take your oncologists advise and do all of the treatments that he/she recommends. Treatments have changed drastically over the years, they are better, more targeted and with less side effects. Whatever side effects there may be there are plenty of medications to combat them.

I am currently taking chemotherapy which consists of Taxol, Herceptin, Lapatinib (Tykerb) and Zometa. I get the Taxol and Herceptin once a week for three weeks then one week off of Taxol, I take the Lapatinib once a day orally at home, I receive the Zometa once a month as a bone strengthener. You may not get this same exact chemotherapy but whatever you do get will be what is best for you and it will be for the most part very tolerable.

I am so sorry that your husband turned out to be such a wimp but some people just aren't equipped to handle things that scare them and that they feel they have no control over and their first instinct is to run. Basically what this comes down to is the person is a coward and even if they had stayed they probably wouldn't have been the type of person that would truly be there for you through this journey in the way that you will need them to be. Perhaps this will turn out to be a blessing in disguise for you. Sometimes cancer will pull a family closer together and unfortunately sometimes it will pull them apart. As difficult as it may be to do you need to stay focused on yourself, it is okay to be selfish during this time, concentrate on what you need to do to get through this. Treat yourself kindly, take care of yourself in the way that you would take care of your child if they were sick. Don't be afraid to reach out to others, to lean on them for support and help.

If your sister is anything like mine and if you have always had a close relationship with her allowing her to help you through this difficult time in your life is something that she needs to do for herself too. She needs to feel like she is not helpless, she will want to be there for you in every way. If she is not this kind of person then take whatever you can get at this time and I am sure it will bring you closer together.

You have come to the right site, the women on this site are amazing. They are so full of compassion, support, understanding and have so much information that they freely give. They are all here for you, to cry with you, to laugh with you, to worry with you and to pray with you. Feel free to post at any time, anything at all, questions you may have, fears, etc., we are here for you.

Stay strong Hon, you will get through this. You can even e-mail me directly if you want to, if I can't help you with something I can at least find you someone on this site who can.

Big Hugs,
Nicola

VaMoonRise@aol.com

[VaMoonRise]

Susan,

A port is a God send. It makes receiving chemotherapy and getting blood drawn a breeze, so much better then having your arm stuck repeatedly. It takes away the risk of collapsed veins too. You will be very glad to get one I am sure. The surgery to have it put in is also a breeze. Your chest may be a little sore for a few days but after that you will almost forget you even have a port in place. )

Nicola

[chrisy]

Susan, of course you are shocked and scared right now - we have all been there. It sounds like your onc is wisely recommending treatment to match the aggressiveness of Her2+ disease. With treatment, the odds that you will beat this back for good without future recurrence are EXCELLENT. You want to be part of those stats.
Supporting you through chemo need not be a burden to your sister. It is not the nightmare scenario we have all heard about and feared as "worse than the disease". I had 6 rounds of chemo with the main side effect (besides the new haircut!) being mild fatigue over time. This may sound strange, but allowing your sister to be there and wrap you in her love can be a gift for both of you. My sister lives 2000 miles away and it was really painful for both of us that she couldn't be here. I'm distressed by your husband's reaction - how terrible that must have been for you.
Don't be afraid of the chemo. You can totally do it. Yes, there are can be side effects, but everyone is different and you may or may not suffer from those that concern you. Don't claim them until they happen - but if they do, know that they can be managed. Also, discussions around side effects are to share ideas on how to best deal with them. Most folks aren't questioning whether it was worth it or not - you're talking about saving your life, after all.
In the end, although you call it "doctors orders", the decision is yours. You will make the decision that is right for you. None of this is fair, but you are NOT alone.
Take care
Chris

[Barbara H.]

Hi Susan,
Tell your sister not to worry about giving you infections. I taught third grade the entire time I had chemo and never missed school or caught my students' colds. I did get sick after my first chemo infusion, which was during the summer, because of low blood counts. After that I had neupogen shots to keep my white blood count up and never had a problem after that.

You have already received good advice. Take your oncologist's advice and lower your risk of recurrence. Unfortunately, Herceptin was not available for me in 98, but it has now proven to be very effective for early stage HER2 breast cancer. You will get through this. Now is the most difficult time. I do feel sorry about the reaction of your husband. That is tough at a time you could have used the support.

Good luck,
Barbara H.

[gin-tx]

Dear Susan,

I know how frightened and devisdated you must be, I certainly was with my second diagnosis in April 2006, previous was in 1995, lumpectamy followed by 36 radiation treatments, cancer free until now. I couldn't believe I was going through more treatment, etc. a second time, different breast. But you must listen to your oncologist and do what he says. Her2 can be very aggressive and to ignore it and not treat would be a shame. And a hex on your husband for leaving you, that's terrible.

I have wonderful support from family and friends, and I'm making it. Had a marginal mastectomy, centinel nodes, one node positive, all other areas were clean. I saw two oncologists before making my selection, one wanted to use chemo followed by radiation and Herceptin, the second said Herceptin along with Aridia, may have to have chemo in the future but am not sure at this point. Have had three Herceptin treatments with no side effects. Plus I also had a spot on my thorastic spine that was malignant and that had to be deal with first, had 18 radiation treatments which I finished three weeks ago. yes they make you tired but you are able to function. I work now 6 hrs a day and am 66 years old.

I wish the very best for you and please keep in touch and let me know how you are doing.

gin-texas
ginkott1@aol.com

[RobinP]

Dear Susan,

I know how you must feel right now, and words can not express how sorry I am for what you are going through. It's enough to go through a cancer diagnosis, without family issue, shame on your husband. However, thank God for your sister. I hope you take your doctor's aggressive treatment recommendations and do it for the sake of yourself and those you love, like your sister. I am sure she wants the best for you, as all of here. Don't be afraid to fight this disease, I am cheering for you. Please keep posting.

[Christine]

Susan,
My diagnosis was the same as yours in 1990, except Herceptin wasn't yet available back then. I had chemo and radiation and was cancer freee until 1999 when I had a recurrence with mets to the chest and brain. Subsequently I was treated with Gamma Knife, WBR, Taxol and Herceptin. I have been in complete remission since 2001.

There are success stories.

Hugs
Christine

[Dianaq]

Susan, I too am scared. I am Her2 positive node negative, grade 2. I had 2 tumors 1 @1.5c DCIS and 1 @1.7c invasive. Both tumors removed with clear margins. I have heard Herceptin and Radiation work well but have not seen enough studies to show if Chem makes a difference with node negative. I am still trying to decide my treatments. I will be right here with you.

[nitewind]

Diane, This is what I keep thinking about, maybe just Herceptin. It's getting closer and closer to chemo time and I'm still so uncertain. I don't want to go against my gut feeling but I'm so scared that what if I don't do it? If I don't do it now will I have the option if I need it later? I'm confused, please keep me posted on your situation.

Hugs
Susan

[rinaina]

Susan, I was diagnosed with stage I, node negative, er/pr- her2+ in April of this year and had a lumpectomy. I just completed chemo and while it wasn't a picnic, I have no regrets doing it because I trusted my oncologist who said I needed it and I did so much research and decided that it was the best way to fight this beast. I just had my first herceptin treatment and will be starting radiation as well in a few weeks. Having chemo, herceptin and radiation makes me feel like I am doing somtheing pro-active to stop this cance from spreading. I know there are no gaurantees but if you don't do any treatment, I feel you are at greater risk for a reoccurence or a metastisis. I am so sorry about your husband's inability to cope with this and he should be ashamed of himself. Don't feel you will be a burden to your sister and her family. I am sure she is happy to be there for you as you would for her. Keep in touch and if I can be of any help just email me or write again here. Best of luck to you.,