New kid on the block!

[pauline]

Hello all

I've replied to posts a couple of times so thought it was time to identify myself!

I'm 56, live in Australia and in Dec 03 was diagnosed with breast cancer after a routine screening mammogram. (no lumps or any external indications of anything amiss). Shock horror and off to the surgeon. A month later I had a mastectomy with an immediate reconstruction with tissue generously donated by my stomach.

After a couple of days, I lurched out of bed, had a shower, washed my hair, started moving around and thought-Hmmmm-I can do this. Stage 2 tumour 2.2cm (smaller than the surgeon had anticipated) Sentinel node biosy had turned out negative. I can definitely do this.

THEN-the full pathology results. The cancer turned out to be Her2/neu positive. What was that? I didn't have a clue. Soon found out. 6 months of chemo (AC and Taxotere) complete with all those little side effects we all know about.

The GOOD news was that I was able to get on a clinical trial for Herceptin. 3000+ women worldwide with early breast cancer. I believe I was the last woman in Perth to get on the trial. So-Herceptin weekly for 3 months with the Taxotere and now 3 weekly till June.

So far so good. The chemo was manageable-I modified my diet , cut out the red wine with dinner, had acupuncture regularly, did yoga and kept going with as much exercise as I could manage. Kept working 3 days a week and had the best of support from my dear family and friends.

And now? I've discovered this board, which has been an unbelievable source of information and inspiration. 3 weeks ago I had my first mammogram since the surgery and hallelujah, the outcome was "no evidence of breast cancer". So-OK for now. I know that the possibility of recurrence is always out there, but in the meantime I'm truly thankful that, for now I'm able to get on with my life, and make the most of every day. And hopefully I'll deal with whatever might come along when it happens.


By the way-thanks so much to whoever recommended "The Making of Herceptin". I got it thru Amazon.com and have read it twice and am planning to pass it round some of the other women who are taking Herceptin on a long term basis as so many of you are.

I'm also wondering-is there anyone else on this board who's participating in the same clinical trial as me. (It has 3 arms-one with chemo and 2 with different cominations of chemo and herceptin) I'd really be interested to hear of others' experiences. Especially in the context of what checkups and scans are done after the course of Herceptin is finished. The info I've received is pretty sketchy and I don't see my oncologist again till May. I guess I've become more aware of the possibility of recurrence and how insidiously it can happen. I just want to be on the lookout!!

So-goodnight to all and take care. Once again many thanks to all of you for sharing so much.

By the way-there's a programme on TV at the moment called "Outback Jack" If it ever gets to the States, I'm sorry to have to tell you that this is NOT real life in Australia! The same as I guess "Desperate Housewives" (shown here this week for the first time) is not like everyday America!!


All the best to you all

Love
Pauline

[Bonnie]

Pauline, I'm 59 and my story is similar to yours, although my tumor was never seen on a mammogram. It was felt in my annual physical and by then it was 3.8 cm. I live in the USA in California and I was lucky to get into the BIRG006 study (It sounds like the trial you are in) and they, too, told me I was the last one in the study. I had lumpectomy in Dec. 2003 and then we realized we needed to find out more about this disease and find out who was the best physician to treat it in our area. At that point we did find a great oncologist and we found out about the sentinel node biopsy and I was scheduled within less than a week. Luckily, again we were directed to a very good surgeon and he informed us that because of the lumpectomy, sometimes they couldn't find the sentinel node. Well, it turned out it was very difficult to find it and he had called in a second surgeon to assist in the removal of all my nodes. At that point he thought they looked too good and decided to try to find the sentinel node again. This time he was able to find it, and sure enough, it did turn out to be negative for cancer. I will thank him until the day I die that he took the time to look again.

My diagnosis was Stage 2A, HER2 3+, ER/PR-. Again my oncologist had to fight to get me in the study. I had done all the tests and signed all the papers but they were going to be shutting the study down, and she told them I'd already done all of this and I should be allowed in the study. And I was.

The arm of the study I got into was the one where you get 6 courses of taxotere, and carboplatin, herceptin every week until that was finished and then herceptin for a year, which I finished January 4, 2005.

After the chemo came the radiation, which I tolerated quite well except for some slight burning toward the end.

During chemotherapy I was very tired and slept most of the afternoons away. About three weeks out, I had my old energy back (even during radiation). I was lucky I had no nausea. They controlled it with medication on infusion. I have had neuropathy in my fingers and feet. My fingers are starting to feel better but I don't really notice much difference in my feet, although my dermatologist tells me that it could be a couple of years because the nerves grow very slowly. Of course I lost my hair and my fingernails/toenails lifted.

As far as tests, before treatment I had a MUGA for my heart, bone scan, CT of my lungs and abdomen and, of course, all the blood tests. Periodically I've had MUGA scans to make sure my heart function is okay and I'm told that after my March visit with my onc., she'll order another MUGA. Now I'm supposed to have visits with my oncologist every 3 months at first, then every 6 months and then every year, etc.

I guess it's just basically a waiting game now.

Good luck to you, Pauline, and if there's any questions you have, I'd be happy to see if I can help. I'm not sure if my email will show up in this message. So I'm adding it below.

Bonnie
renbon@hotmail.com

[Kristen]

Hi Bonnie and Pauline,
I am on the same study. I got the Herceptin, Carbo, Taxotere arm also. I finished up with the Herceptin in Dec. I too had a good experience. Followed up with rads last May and Chemo the end of March, so almost my one year anniversary. YES! I see my onc in March for my first 3 month follow up. All seems well, except the sternum thingy which has been going on for a while, hope it's just nerve regeneration.

Welcome to the board. Keep in touch with your progress, also Rozebud is on the same study. Take Care, K

PS: same schedule as you on scans and muga's.

[Janet M]

Pauline
I am also an Australian - living in Ballina. As i live in a regional area being on a trial for herceptin was never discussed with me or recommended. It wasn't until i did my own research and a locum from Sydney recommended that i make contact with Westmead Hospital (a large city hospital for those that don't know Australia) that i found out about it. By the time appointments were organised i was in Coffs Harbour for a week (for work) and i was told that in order to be on the trial i had to be in Sydney the next day. Absolutely impossible to organise. I did not go. It is always in the back of my mind what difference not having the herceptin is going to make to my long term survival and disease free state. Oh well can't dwell on the negative - need to look at the positives. I have my abdo/chest/brain CT and bone scan today. Hopefully all will go well. Janet M

[Guest]

Pauline
One other thing - did you have chemo only because you were Her2 positive. If so what was the reasons given by the onclogist. Just like to know as much about what the Dr's are saying about being her2 as i can. Thanks Janet M

[Ginger]

Why did you have the Massectomy if neg nodes? Was it due to the tumor size and HER2 status? Was it your idea or your Doctors? I have a similar situation tumor size neg nodes etc. and nothing was recommended like what you went thru. Just wondering.

[Lisa]

Welcome to our Board! We have a few active Aussies, so I know they'll welcome you, too.

Great news on your followup and thrilled you were able to do Herceptin. Wish for the best. Some of us (like moi) have discovered that Herceptin alone doesn't do the trick, but for most of you it does.

Ah, yes, those wonderful glass of red wine with dinner...those were the days!

There was one "round" of Outback Jack on a few months back. What--you mean to tell me that all Aussies aren't gorgeous, independent, looking for an American wife, live in the Outback and come from money??? Darn, I would have bet my oil wells on it! (I'm originally from Texas).

Love your writing style. Keep us posted.

Love and light to all here and above,

Lisa

[pauline]

Hi all!

Thanks so much for all your quick and friendly responses!

My schedule of followup after I finish the trial in June is also MUGA and mammograms. I guess I was wondering if there were going to be any other scans factored in to check for more distant recurrences. As the purpose of the trial is to check on how effective Herceptin is at keeping early breast cancer under control, I would have thought they would be including additional testing to ensure it hasn't spread, and that Herceptin had done what it was supposed to. After all we all had bone, CT scans etc at the start of the trial, so I thought they would be continuing to check on that.

Janet-I'm sorry you missed out on the trial. That's the thing over here in OZ-big country, small population so services are spread far and wide. I have a friend in Darwin who had to go down to Adelaide for radiotherapy after she had a lumpectomy. AND had to wait a month or so for the results of her mammogram, as the specialist from Perth only flies up so many times a year. A couple of friends in NW Tasmania had to go down to Hobart for core biopsies as there was no facility closer by. Is the trial closed everywhere? I thought the sample in Perth was comparatively small and closed out quickly because of relative population size.

You asked why I had the chemo. Yes -it was because of the Her 2 positive result. Before the surgery I had naively assumed I would be taking Tamoxifen. After all all the other women I knew with breast cancer had. That was actually almost as big a shock-to find out that this Her2 was something else again and would need chemo to knock off any rogue cells lurking about. Made sense to me-and my surgeon told me about the trial and that I should definitely discuss it when I saw my oncologist. In fact she brought it up. From memory she also said that as it was a trial, no-one would know for years how effective it would prove to be. The info that I got was that there had been such good results with women with metastatic breast cancer that we were the next logical group to test. Who knows? As Bonnie said earlier-it's just a waiting game now. By the way- hope all goes well with the tests you had today. When do you expect to get the results? Here's to positive thoughts!

Ginger-you were asking about my surgery. We didn't know at the time that the nodes would turn out clear and that I would be Her2 positive. The mastectomy was advised because I don't have much in the way of breast tissue. My surgeon was concerned that if he did a lumpectomy he'd have to remove a lot to achieve clear margins, leaving a fair amount of disfigurement as well. He felt a mastectomy would be more effective in completely removing all the offending bits and on that basis he suggested an immediate reconstruction as well. I didn't even realise that it was possible to have a reconstruction straightaway and it was the best decision I could have made, even tho the surgery was longer (the recon is what takes the time). I didn't hesitate. Not a walk in the park, but I had every confidence in both surgeons and I'm very pleased with the result. Also ended up with a free tummy tuck! Very handy in your fifties!

Lisa- believe me -we have gorgeous Aussies everywhere! And I believe a fair few of them are either modelling in New York or living it up in Hollywood! And is Texas full of JR Ewings????!!!!

Happy Days to all you all! Onward and upward!!

Goodnight!!

Love
Pauline
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