My treatment - comments and advise please

[caya]

Hello

It's Caya - I met with my oncologist on Thursday - he is giving with FEC-T, three rounds of FEC - once every 3 weeks, then 3 rounds of T - (taxotere) - also once every three weeks.. then tamoxifen (not sure for how long) and Herceptin - the Herceptin once every 3 weeks for 17 rounds (one year).

This FEC - T protocol is a variation of the commonly used CEF- T here in Canada that has shown excellent results for HER 2/neu+ BC .

The onc. and his team are trying to get me in to have a port installed before next Thursday, but if they can't I am going to start next Thursday, Jan. 25th at 8:00 a.m. Naturally I am nervous, but also anxious to get this going so I can feel that this cancer is being killed.

Any advice/comments would be appreciated.

Thanks so much,

Caya
Stage 1
ER+ PR+ highly positive
HER2 +++
no node involvement
all scans clear
age 48, premenopausal
Hysterectomy (only uterus - May 2004)
No family history

[Bev]

Hi Caya, I did Ac/ TH. Just posting so this will stay current so those who have had similiar treatment will have a chance to respond. I think some of the drugs you will do are related to those I have done, but not all. Good luck. BB

[skeetur]

How big was your tumor?

Skeetur

[caya]

Skeetur,


The initial tumour found by my plastic surgeon was 1.7 cm. Then during the mastectomy another one was found - 1 cm. So my oncologist is adding them up to be 2.7 cm. - is this correct? some websites I read the doctors don't add them up - I asked my onc. if this made me stage 2 - he said not necessarily, he will punch my numbers into adjuvant online - he also told me that adjuvantonline does not have a category for Her 2/neu, so even tho I as node negative, he will punch me as 1 - 3 nodes positive. Any thoughts on this anyone?

Thanks
Caya

[skeetur]

I hadn't heard of adding the tumor sizes together so I don't know.

I know that on the one charts I've seen on a few websites (I know I saw it somewhere on NCCN, I believe) there are certain risk categories... low, intermediate and high. I'm not sure if I have this 100% correct. Cannot find my link back to the chart.

Low risk is small tumor size, age > 35, HER2-, no nodes, grade I, er+/pr+.

Intermediate risk is small tumor size with at least ONE of the following:

1. Age < 35
2. Her2+
3. Grade 2 or 3
4. ER-/PR-

Intermediate is also for folks with 1-3 nodes involved without any of the above.

High is larger tumor sizes, more nodes, etc.

I suspect that is why your doctor is going to plug you into that tool with 1-3 nodes. To get you do that intermediate category. The chart also said that some docs don't count the grade in the criteria for intermediate risk.

I think I got that right. I'm typing this off the top of my head.

Skeetur

[caya]

Thanks Skeetur.


I think you are right about the onc. wanting me to get to that intermediate risk category ( of recurrence, I assume). He still is amazed that I am HER 2+++ with all the other factors - ER/PR both highly positive, low grade tumor, no node involvement, no mets - I told him to throw everything they've got at me, and he chuckled and said " I don't want to kill you in the process!"

Where are you - and what stage are in you treatment wise?

thanks again
Caya

[skeetur]

I have biopsies in early December. Pathology showed DCIS Grade 3 (comedoencrosis). Lumpectomy was December 27th. Pathology found 2 areas of IDC but they were small. Largest was .3 cm (3 mm). It is Grade 2. I didn't get clear margins on the DCIS so re-excision lumpectomy is this coming Tuesday. It has been the longest weeks of my life. I hate waiting.

I realized I hadn't seen the breast cancer profile on the pathology so I got it faxed to me the other day. I'm ER+ (55%), PR+ (60%). My HER-2/neu is 2.8+ (IHC). I assume FISH is called for.

So, based on all of this... I assume I'm in that intermediate risk category based on Grade and HER-2/neu.

I guess time will tell...

Good luck!

Skeetur

[caya]

Hi Skeetur

Yes, the waiting is the pits - I think based on what I have read, if you have Her2/neu + BC, no matter what your other numbers are - you are put into that "immediate" category at the very least - bigger tumor, ERPR-, lymph node involvement could move you into the "high" category.
But remember - alot of the stats are old - based on trials and figures before they had herceptin. Herceptin is really a magical drug for us early stagers - amazing success rates -
My IHC was also inconclusive so they did a FISH, which showed me +++.

I am starting my chemo this Thursday, I just want to get on with it.

Good luck to you - and have you had any scans yet ?

Let me know how it goes.

Caya

[kari]

Hi Caya,
Other than my nodal involvement and your hysterectomy, our profiles sound quite similar. I am 47 (diagnosed at 46) and have recently completed my first year of treatment for stage 2B, grade 3 invasive ductal carcinoma. On lumpectomy, my tumour was 2.2 cm. However the margins weren't clear, so I ended up having mastectomy with SNB on Jan11/06. Two sentinel nodes were involved, so had axillary dissection. All 17 nodes clear. I am ER+/PR+, and Her2+++ as well. My onc in Kitchener gave me two options for chemo---AC or FEC, +/- Taxol, stating either would be appropriate courses of treatment for me. So I did a lot of research, and decided to go with AC+Taxol. Did AC every three weeks for 4 cycles (they didn't offer dose dense for me), and then did T for the same. Finished chemo late Aug 06 and started rads late Sept for 25 treatments. I began Tamoxifen & Herceptin in Nov.
I found the AC tough at first, until I got my meds for the side effects in order. I got the really strong anti-nauseant, which was a blessing for the nausea/vomiting. The Taxol was much harder on me--the muscle and joint aches and pains were almost unbearable! I was ready to quit at one point. But once again, after I figured out the appropriate types and dosages of meds, it was more tolerable. So far, Herceptin has been a breeze!
Be sure to keep your chemo treatment nurses informed of all your concerns. Don't be afraid to call them with questions. My nurses were angels of mercy. I found it useful to keep a record of the chemo side effects--days and times I felt symptoms. It helped to be proactive with the meds. Best to you as you begin your treatments.
Blessings, Karen

[skeetur]

Caya,

Only scan I've had is with the surgeon and that was a breast MRI prior to lumpectomy.

I'm scheduled to see the oncologist for the first time in 2 weeks. Surgery this week Tuesday. Pathology returned the following week at my surgeon's follow-up Thursday (2/1). Oncology appointment the next monday 2/5. I also have a radiation oncologist appointment set for a few days after that.

I had oncologist and radiation oncologist appointments scheduled before but when we didn't get clear margins... had to drop back and start over.

If no clear margins that time, then I'm opting for mastectomy. That'll be it for that breast.

I'll keep you posted. You do the same!

Skeetur

[caya]

Kari,

Thanks for the advice regarding the medications. I will take notes on Thursday regarding the order and strength of all the meds, and keep a journal for the subsequent days. I have heard that Herceptin is a lot easier than the chemo. I guess I will find out what is good for me. I will definitely be on top of it all.

Caya

[caya]

Skeetur,

I will be watching and praying that everything goes well for you. If you have to have a mastectomy - oh well - I did, and I had a great recovery from it. I actually just bought a great prosthesis last Friday, and some gorgeous bras - you would never know. I may have reconstruction in the future after I finish all my treatments - I will keep that option open.

Best of luck to you
Caya

[skeetur]

My sister opted for bilateral mastectomies with immediate reconstruction (DIEP) and did really well. If I have to do mastectomy, I'll probably do expanders and implants on both sides and get my left side adjusted to match. Not sure I have enough abdominal tissue (fat) to rebuild a breast. I had gastric bypass surgery 20 months ago and lost alot of weight but it didn't do my breasts any favors. LOL. But my doc felt that lumpectomy was warranted and still feels she can get it all with the repeat excision. We'll see.

My sister did DD 4 ACs and 4 Taxols and did very well. The meds they gave her to counter the side effects were great. She only had one bad reaction to one treatment and that was because they had backed off some of the steroid due to some acid reflux. They put it back for the next treatment. She had aversions to cooking/food smells. Her chemo finished last July. She is post-menopausal so she is now on Femara and doing well.

It helps to have seen what she went through in the last year and see how well she is doing. Made this whole thing easier for me as if any of it is easy, ya know?

Take care,

Skeetur