Good News Today

[tousled1]

Well, today I finished my last round of neoadjunct chemotherapy!!! Never thought this day would come.

But the great news is that the results of he PET scan I had on Monday showed no mets and currently no active cancer. Seems the neoadjunct chemo did its trick.

I am now scheduled for surgery June 8th and I must admit I have a really positive feeling about it. My onc and surgeon both recommend a mastectomy which I agree with. In light of the size of my initial tumor and the invasivesness of it, my very dense breasts and how mammograms don't pick up things too easily with dense breasts, and the very strong history of breast cancer in my family, I have opted to have a bilatral mastectomy. For me it was a hard decision but I believe it's the best.

My oncologist will start me on hereptin immediately after surgery due to my strong HER2 satus. About 3-4 weeks after surgery I will have my 40 rounds of radition.

So far things have been working out for me and hopefully will continue to.

This board is an inspiration and contains a wealth of information for any woman with breast cancer. I thank the day I found this board.

S

[RhondaH]

And continued health and happiness Take care and God bless.

[Kimberly Lewis]

Very happy for the good report. I have been happy with the hard choices I made and hope that you will be too. kim

[al from Canada]

Dear S, I applaude your ability to make these very hard decisions however,

1. did you know that there is no survival advantage between mastecomy and lumpectomy when chemo is given in the neo-adjuvant setting?

2. I question the neccessity for 40 rads after mastectomy, particularily after a left (close to the heart) mast.

3. have you been tested for the BRCC2 (sp?) gene? if that isn't present, your chances of a re-occurance are the same as the general population.

4. some research has shown that radical surguries can further activate the HER2 gene which is really a type of groth factor.

I don't mean to stir the pot however I also don't like to see such radical decisions based upon only one team's opinion. This is really radical stuff, I just hope it is grounded in sound medical evidence.

Good luck,
Al

ps, Linda had neo-adjuvant chemo + lumpectomy and had clear margines and no local re-occurances. Her mets were there (as we discovered later) 1 month after diagnosis.

[al from Canada]

To add to my previous post, please read the following in "articles of interest"

Al
http://her2support.org/vbulletin/showthread.php?t=23801

[tousled1]

Al,

Thank you for your concerns and insight which I know comes from caring for someone you cared deeply about.

Believe me, I did not come to my decision easily. My onc tested me for the BRAC gene and I do carry it. That was another factor in my decision. A brief history of breast cancer in my family: sister, mother's sister, aunt on mother's side, grandmother on mother's side, father's sister, aunt on father's side, grandmother on father's side.

The reason my oncologist is recommending radiation after mastectomy (a rariety) is because of the initial size of the tumor 5.5cm and the invasiveness of the tumor in the breast (3cm). My cancer is in the right breast and on my initial diagnosis my surgeon also biopsed some of my axillary nodes which tested positive. My oncologist is a young woman who keeps abreast of all the latest news and clinical trials for breast cancer. I have the utmost confidence in her and in my surgeon who is also a young woman whose speciality is breast care/cancer.

I have done a lot of research on mastectomy vs lumpectomy and am aware that the survival rate is the same.

My decision for a bilateral mastectomy was based on many factors -- the most important one being my own peace of mind. Regardless of what the research shows I, in my heart of hearts, must do this in order to have peace of mind.

I know it is a drastic decision but at my age (59) I'm not planning on being a pole dancer or anything -- just trying to put a bit of humor in here. I do plan on having reconstruction at a later date.

[tousled1]

Al,

Forgot to mention that I was initially diagnosed Stage III (October 2005).

[al from Canada]

Dear Kate,

I'm sorry to have to have pulled this much history from you, just to answer one question, as it was not my intent. I am happy that you are at peace with your desicion and now that you have explained it, it makes perfect sence. Please remember, through your surgeries and rads, that you have friends here and don't hesitate to call on us.

The best of luck and love from my family,
Al
PS would you be adverse to a second opinion? After all, putting you entire future in one persons hands takes a lot of faith. I know it is a pain in the ass to get a second BUT, it won't hurt!

[tousled1]

Dear Al,

I don't mind giving information about my condition to anyone who asks. Hopefully by all us women here sharing information we all become more informed about what types of treatments are available for breast cancer. I know that I have learned more about breast cancer than I ever wanted to know.

When I was first diagnosed they wanted to do surgery right away because of the lymph node involvement. It was too close to the Holidays so I opted for the neoadjunct chemotherapy and was terrified that I might be making a grave mistake. As it turned out, thankfully, it was not the wrong decision for me. It worked for me and hopefully it can and will work for other women.

As for a second opinion, I feel extremely confident with my oncologist and surgeon. I go to the Georgia Cancer Specialists who were the first in the United States to offer chemotherapy in their offices -- quite a benchmark! My surgeon is head of the Breast Center here and she is the most empathetic (spelling?) doctor I have ever meet. I feel that confidence and faith in your medical team is the most important factor.

My son had leukemia and lived in Bethlehem, PA, he was 36. I went to PA to take care of him and I took him to Johns Hopkins in Baltimore for a second opinion. At Hopkins they gave him a 15% chance of survival. He was diagnosed April 7, 2002 and died September 2, 2002. So, both oncologists had the same opinion.

I considered at one point making the trip to Johns Hopkins, but feel that here in Atlanta I have great physicians.

Again, I want to thank you for your concerns. And I will not hesitate to continue using this board for purposes of information gathering, asking questions, encouraging other women, congratulating women on their latest accomplishments, and most of all keeping up with the latest news on breast cancer.

[al from Canada]

Dear Kate,

I'm sorry to hear about your son; that must still be very painful. I wish you the best in your treatments. Keep fighting!!
Al

[Kim in CA]

Kate,

I too had a fairly large primary tumor (4.5cm) that seemingly came out of nowhere. I had just had mamo less than a year earlier. I don't know if I carry the BC gene, but do have family history of BC. I also had positive nodes and being Her2+ and ER and PR-, my Onc realized the aggressiveness of my BC. We discussed the options and I decided to go for the high dose chemo with stem cell rescue. It was a very drastic option, but I was just 42 and felt like I was going to do everything possible. Then, just when I thought I had done everything, they informed me that they thought I should also do rads! So, I did 6 weeks of radiation to boot!

I don't regret my decision, even though the stem cell procedure has fallen out of favor as a BC treatment. I believe in my heart that the agressive treatment I had kept me disease free long enough to still be here when Herceptin became available. I had recurrence to my liver in 2001, and again we hit it hard with 8 months of Taxotere and Herceptin, followed by liver resection, just to be sure we got it all. So here I am almost 10 years out from original diagnosis, still leading a very active life, with no regrets!

Bottom line for me, was always be agressive if you have an agressive cancer and having confidence in your Dr. is HUGE!

Best of Luck to you, Kim in CA

P.S. The only other thing that I didn't do, was to have both breasts removed, and sometimes I still worry about that.

[tousled1]

Kim,

You seemed to have made the right decision for yourself. I too believe that you must e very aggressive in fighting this disease. I was Stage III, ER/PR-, HER2+++, high grade tumor (3), axillary node involvement, and strong family history. I feel I am making the right decision. Who knows what the future holds for us women with breast cancer. Must admit treatment has come a long way in the last few years. All we can hope for is more improvements and hopefully a cure!!!!!

[rinaina]

Amen to that and thank G-d it has come a long way. I believe every member on here has educated themselves or is educating themselves to help them be their own best advocate and to help them make educated decisions regarding their care, treatment etc. We all want the same thing....to live! One thing I do believe in strongly is a positive attitude. I believe there is a very strong connection from mind to body and we need to be strong and fight with everything we have at our disposal. For others the fight is too difficult and I can respect that. I know I choose life and everday I take positive action and everyday of my future treatments....I believe bring me closer to surviving this disease. Best of luck to you.

Rina

[Jean]

Hey Kate,
I think you can be a dancer - you are one powerful LADY!
Thinking of you and will be saying those prayers for a speedy recovery from your surgery! I will keep in touch with you..


Lots of Love,
Jean

[CLTann]

Dear kate,

When I read your post first, I had the same question as Al that for women doing double mastec why is radiation necessary. Then I realized that you had positive nodes. These cancer spreads certainly made the radiation mandantory. I truly believe you have made a wise decision along with your doctors.

It is not easy to have effective radiation treatment. These microinvasions are not detectable, thus the need for chemo and herceptin. Hope your future news are all good and your treatments all completely successful. Good luck.

Ann

[tousled1]

I want to thank everyone for their wonderful input. I felt lost when I was first diagnosed and since I found this board I know am equipped to have a large say in what my treatment will be/won't be. I'm anxious about the surgery but I know that I am in good hands and I also know that I have a wonderful support group right here -- ready and willing to listen, answer questions, listen to whinning, encourage, etc. etc. You are a great bunch of women who offer inspiration to everyone.

[DeborahNC]

(Kate)

What wonderful news about the PET! I'll be thinking of you June 8.

[jhandley]

Hi Tousled
I am almost certain that "my recurrence" in sept 05 was really another tumour in my left breast that was missed intially due to dense breast tissue. If I had a mastectomy in 2001 instead of a lumpedectomy I probably would not be in the situation I found myself in Sept: a second 4 x 2 cm tumour not detected by ultrasound and just showing some tiny microcalc. on mammo. and a 15 mm liver spot (which is now gone).

jackie

[lexigirl]

Dear Kate,

Thank you for sharing your bc story. It is so hard to know if we make the right decisions. I am really happy to read that you have greta Drs that you have total confidence in. That is awesome. Best wishes on your upcoming surgery.

Lexi