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[rinaina]

I was diagnosed with Stage 1, Grade 3, Her-2+ infiltrating ductal carcinoma in April,2006. I was estrogen and progestin negative. My tumor was 1.4cm and my sentinal node biopsy was negative and the margins were clean. I have not begun treatment yet. My appointment with my well renoun oncologist is May 18. I am aware that this is an aggresisve form of cancer and have done quite a bit of reading on the subject including Susan Love's Breast Book. I am very concerned for my prognosis. I know this much after speaking with my medical team who I am very happy with.....I will have to have chemotherapy, herceptin and radiation. I know that I have to have a Mugga Scan. What I don't know is what treatment comes first, chemo or herceptin and where does radiation fit into this equation? I am very concerned over the possible serious side effects of herceptin including but not limited to the heart. My mother died from congestive heart failure so does this predispose me to being more likely to get it once on herceptin? I am concerned about my prognosis and long term survival. Help! Is there anyone else out there with node negative, margins clean Grade 3 Her-2+ Stage1 who has been through this and doing very well? Or anyone with a similar case? Thank you for your help.
Rina

[RhondaH]

your dx was very similar to mine, only difference is I was 1.6 where you were 1.4. I was dx 2/1/05 and since THEN, treatment has become very different...as a "guess" you will have chemo AND Herceptin together and then Herceptin for a year. What chemos, I'm not sure as they are changing. You will do radiation after chemo (I did mine 3 weeks after my last chemo) and no, you are not necessarily predisposed to CHF (my whole FAMILY has heart problems, I thought I would have a problem w/ this, not cancer as we don't have cancer in my family) just walk/exercise and take COQ10. You'll do fine. Take care and God bless.

Rhonda

[rinaina]

I appreciate your quick response. I too have no family history of cancer so of course I was shocked when I was diagnosed. Just want to live, so I will do whatever I have to in order to beat this.

[JulieKW]

I am also similar in diagnosis. I got the bad news Feb 17, had my lumpectomy Mar 10 for a 1.5 cm tumor, HER2+ ER/PR+ Pretty aggressive tumor. Had third of 4 chemos today, 3 weeks apart, then in mid June start radiation and Herceptin. I truly love my oncologist, he is a kind person and I trust his judgement. But I have my low times like tonight, disliking my now bald head, fearing the aggressive nature of the tumor. I cry some while my husband and kids are asleep, and I pray for God's guidance. He has the answers, I just can't see them yet. God's blessings on you all.

[rinaina]

I know how you feel Julie in regards to those low times. I haven't even started tx yet and I feel low at times. I do hide it from my grown children to protect them but I have confided in my hubby about being scared at times. I am learning that losing my hair is the least of my concerns. I just want to survive and have a long life to see my kids get married and become a grandmother someday. My biggest worry right now is how I will respond to both chemo and herceptin. I am so concerned with the possible side effects of both and especially herceptin. I feel so healthy now and fear for my healthy body being weakened and made sick, ie: heart problems due to herceptin. I thoroughly trust my oncologist and the rest of my medical team, I just don't want any other health risks or problems. I wish you the best with your treatments and outcomes. May G-d watch over us all.

[JulieKW]

I want to add Rinaina. that there is a fairly new drug called Aloxi that can be given to you IV along with your other pre-meds, before you actually get the chemo. It works up to 5 days (from ONE dose!) to prevent nausea, and I have had very good luck with it. My appetite is flat afterwards, and my intestinal tract feels a bit strange, but I do not have nausea and have not gotten sick, except for the stomach flu my 7 yr old shared with me! You might want to ask your doctor about that. PM me if you want to share anymore "newbie" thoughts.

[rinaina]

what is pm and how do you do it?

[JulieKW]

Click on the name (in the box at left of message) of the person you want to send a Private Message to, and the drop down menu will offer that as an option, if the person has chosen to recieve PMs.

[SherryS]

Hi. My dx was similar to yours but not exactly the same, and I had 1 node of 27 affected. I had 2 surgeries (lumpectomy followed by a lymphectomy), 8 rounds of chemo (4 AC, 4 taxol), 1 dose every 3 weeks of the AC and then 1 dose every 3 weeks of the taxol; 30 hits of radiation, 5 days a week for 6 weeks and have had my 2nd dose of herceptin (1 x 3 weeks for a year). I suffered very few side effects; some were worse than others, but I vowed to myself at the start that no matter how I felt, even if I had to crawl on my hands and knees to a treatment, I'd be there. And I was. My body may have turned on me, but I decided that this had picked the wrong chick and I wasn't going down without a fight. I always refer to myself as "David" and cancer is my "Goliath". I do a lot of visualization and imagery and that has helped me through all of this. I don't think about cancer -- it's part of who I am, but not all of who I am. It comes to the forefront when I have treatments, or appointments with doctors, but other than that, life is for living and I've continued to do that for my children and for myself. When I do worry, it's about the aggressive nature of my cancer. I'd be happier if it wasn't that type, however, that can't be changed, only my attitude and how I face it can. And if it's going to be aggressive, then you'd better believe I will be too -- with every treatment I have and have had, I give thanks to the brilliant men and women who came up with these drugs and treatment plans, and the women who have gone before me and fought this disease so that the rest of us can benefit. Think positively, embrace your spirit, have faith, seek support where you can, and live each day to it's fullest. All the best!

[JulieKW]

What an inspiring post Sherry. When I feel my attitude wavering I will reread what you said.

[SherryS]

I appreciate your comments Julie. I have bad days too and times when I feel myself wavering -- I think we all do. We wouldn't be human if we didn't. Life seems to step on our toes, even when we're in the midst of the biggest fight of our lives...our children need something, we need to buy groceries, cook a meal, I'm still ready and willing to listen to my friends' problems or concerns, lend an ear -- and some days I just think it's going to be a long one. I tell myself it's only one day, the next one will be better and I've found that hearing other people's inspiring stories helps. Generally for me, a low day when I've gone to the bottom signifies that I'm going to come up for air stronger, more determined and more resilient than I was before. Talking with other women in this lifeboat certainly helps us along, doesn't it? We probably all have one good arm, one good side and rowing alone the boat won't get very far. Combined all those arms in one boat, rowing in the same direction,we'll go far!!

[rinaina]

Thank you Sherry for your incredible positive letters. You are an inspiration to me and quite motivational as well. I too will refer to your wise words and advice when I feel myself,(should I feel myself), feeling down. You are so right when you mention how great it is to have others to talk to who are in the same boat. I don't know what I would do without this forum. Thank goodness for the internet. Can't imagine and don't want to imagine what women did years ago without the newer drugs and forums available today. I appreciate everyone's help and support so much.
Rinaina

[Sonja]

Dear Rina,

I was also diagnosed in April 2006 with Stage I, Grade III, Her2+ infiltrating ductal carcinoma. My tumor was 2.0cm. Nodes are negative and no metastas.I am starting chemo on May 23rd, 2006. The treatment will be once every three weeks for 6 sessions. My cocktail is called a FEC (I surfed the net and found what FEC stands for and the drugs used). Once my chemo treatments are finished, I have a five week vacation (Ha!Ha!) and then start my radiation treatments five days a week for five weeks along with Herception once a week for one year! I know they say that this type of prognosis isn't that great but hey, keep your chin up girl, and think positive. I told my doctors to bring on the drugs, bring on all the treatments they want because I am going to get better and give this breast cancer a kick in the butt!
Keep positive and if you feel like discussing things you can send me a PM too!
Keep your chin up!

[SherryS]

That's the spirit Sonja -- you give this cancer a kick in the butt!!! Keep thinking that way! You'll be starting your "cocktail" on Tuesday. All the best as you get started on the journey.

[rinaina]

I was told by my oncologist that my prognosis was excellent given my particular case. As a reminder, I am stage 1, grade 3, nodes negative, clean margins, tumor was 1.4 cm, her2+, estrogen and progestin negative, infiltrating ductal carcinoma. My dr said that he has seen cures with this type up to 86%. Am I being naive to believe this? Anyone else with my case have other statistics or prognosis? I am one who likes to know everything and the truth so please do not hold back as I can handle it. Starting chemo Thursday, May 25, cytoxan and adraimycin, 4 tx over 12 weeks. My doctor offered me to be part of a study which basically is comparing FEC treatments to Cytoxan and adriamycin treatments. Basically what happens is your name is placed in the computer and it's like flipping a coin....50% chance of winding up with one or the other regiment. I opted not to be part of the study. Has anyone else heard of this study and what do you all know about the FEC regiment? The oncologist said it isn't to see which is better at fighting the cancer because they are both equally effective, rather it is to see which one is better tolerated. Would love feedback on this.

Rina

[SherryS]

For me, believing that anything is possible, that everything I can do is taking me steps closer to beating this disease is essential. I don't focus on statistics -- they have their value, but I don't concentrate on that. I know that I am one person, I am not exactly the same as any other, so what happens to me will be different than what happens to someone else. I take heart in success rates and success stories and know that anything is possible. I trust in my doctors and what they tell me -- I value their knowledge and their opinions. I've done my own research and I arrive at my own conclusions. I took part in a clinical trial study w/my rads and was glad that I did (meant I received rads to breast and underarm..having had 1 node affected this seemed wonderful to me). I'm glad I took part -- there may be additional risk of LE for me, but I was willing and prepared to take the risk. Information gathered could potentially help the woman (and men) coming after me, much as what other people did ahead of me has benefitted me. There is also closer follow-up post-treatment when you participate in a study and I felt that would be beneficial as well. With any treatments or studies, choice is personal, pros and cons are weighed. As your doctor told you, both options are equally effective so saying no to the study won't be detrimental to your treatment. I didn't have FEC so can't speak to that, hopefully someone else who has can speak to that better for you.