okay someone help me out a little...

[Tricia]

Hello aain everyone... **sigh**

Another update... so I had my mastectomy last THursday and my surgeon called late this afternoon with the pathologist's report...and... well things dont look so great. 27 nodes taken out 9 of them with cancer..... still had cancer inside the chest area...looks like I will need radiation now.... Surgeon told me that my battle wont be with cancer in the breast anymore but with mets...although preliminary scans have shown nothing so far...he siad with that many lymph node involved it's bound to happen.... nothing else he can do surgically....**sigh** He said after taking the whole breast the margin was clear but the cancer was wall to wall...so he said "not really clear like we would like to see"...... I am sure there are many of you with large cancers and lymph node involvement was your prognosis the same... and does radiation give me that much of a better chance? Any advice would be great and can some one tell me a little more about radiation and the side effects of it?

Thank you

[Tricia]

Baby it is me, I am replying to your latest post logged into your profile, so it will look like you are replying to yourself. I just wanted you to know how much I love you baby, how much you complete me. I can truelly say you are my best freind, my soulmate. We are so lucky to have the sincere love that we share, to have something that really alot of people never have in a marriage, True freindship. seeing you get the news of the pathology report today broke my heart! But it did strenthen my resolve to be there for you that much more baby! To be the man of God that I am supposed to be, leading you and our children in this journey on Earth. You are so strong baby, from hearing the not so great news on the report to seeing you laugh your head off at the movies later that evening with our freinds. I respect and admire you so much baby! Your strength encourages me, and also has had an enormous impact on everyone around you, Tricia, people have came to know the Lord because of your testimony! Can you imagine what you look like in the eyes of the Lord? Helping bring in one of his kids? Hearing him tell you "Well done my good and faithful servant, enter now into the kingdom of heaven for great is thy reward." The Devil has already lost baby, we won when Jesus died on the cross years ago. He can measure out pain on this earth temporarily, but it wont compare to an eternity in heaven with the lord and the rest of our family. I love you baby, you keep fighting and know that i am with you every step of the way.
I love you Tricia ,
Your husband,
George

[Becky]

Tricia


There are many, many women on this board who had more nodes involved than you and they are doing very, very well. Herceptin has changed the landscape of this disease. Radiation does do a wonderful job of cleaning up cancer locally - especially when given concurrently with Herceptin (which I am assuming you will be continuing until you have received Herceptin for a year).

Also, you did receive the chemo prior to surgery - how good of a job did the chemo do? Was the cancer in the nodes and in the primary tumor dead, almost dead? If not, you should discuss with your medical oncologist as he can give you a couple of more rounds of something different. I am sure you had a good response. If your surgeon didn't discuss this with you, then they did not do their job. In fact, they did not do their job of giving you lots, and lots of Hope because you have a very good chance of going just fine.

Big hug to you from over here. I am sure some of our other wonderful members will respond who were in your shoes.

Love

[IRENE FROM TAMPA]

ToTricia- try not to get too down on your news. You are such a strong fighter with everything you have been through that I just know that this is just another curve in the road that you will overcome and straighten out again.

To George - It is 7:30 am. and I am at work checking out the site and your
letter to your wife made me cry. But my tears are for the beauty
and love of this letter to Tricia. It must comfort her tremendously
to have such strong support and love from you. This is a very
important part of the healing. Your strong love for her keeps her
strong George and I am sure she will once again rally as she
always does.

Both of you take care. You have made my day brighter this morning.

[pattyz]

Tricia,

I was dx'd Stage IIIb in Jan. 2000. Inflammatory and Invasive. There were two tumors (3.8cm & 1.9cm) upper and lower inner quadrants. Six nodes positive of 26. Er+ Pr- but not til I recurred was I tested for Her2, which then showed +++ for that, too. My right breast was the typical orange peel look from mid nipple down.

My whole first bc experience was in Mexico, as I had no insurance. I had surgery first. Then A/C. No rads at all. But that was my decision based on no more money...

Yes, I recurred two plus yrs later. I've had mets to mediasinal nodes, spots on lung and pelvis...and to brain.

My body is NED since late 2002, with 2 recurrances of brain mets. I have been living with 8 brain mets for two yrs now. They have responded to Xeloda/Temodar. Initially, I had focalized rads to 16 brain mets over the course of 18 months with five seperate treatments.

So, my point is, ( I think! ) that I did not recur to breast area forgoing rads. They would not have addressed the mediastinal nodes. The horse was already out of the barn, so to speak... AND I was not tested, thus not treated with Herceptin way back then... I'm sure that would have been to my advantage.

When I was finally dx'd with mets and found to be Her2+++ (by surgical biopsy) receiving Navelbine/ Herceptin for just a few months put this old body NED.

Somehow, I have way passed my 'expiration date', both for Stage IIIb and for brain mets: seven+ yrs and four 1/2 yrs.

Only you can make the decision to have or not to have radiation. However, I don't regret NOT having rads and feel that doing so would not have changed the course of my bc. Having Herceptin back then...now that could have made a big difference.

Hope this ramble has given you something helpful, anyway...

very best, hopeful wishes to you,
pattyz

[lynnw]

Hi Tricia,

Just wanted to share a few thoughts for you to consider in determining your next steps in treatment. While there may be nothing more to do surgically, there are other treatment options to consider to reduce the risk of recurrance. Like you, I had taxol/herceptin/carbo prior to my mastectomy and was left with some residual disease, 8+ nodes. Following surgery, I had four rounds of AC, every two weeks, followed by radiation. I was fortunate not to have any side effects from radiation. I am light-skinned but had only mild itching and no significant redness or burning. I was a bit tired, but I returned to work as a teacher and took care of my two young kids. Radiation was very manageable. Like other women on the board, I also had a year+ of herceptin only. I was 32 and premenopausal at diagnosis, so I also had my ovaries removed in order to take an AI. I don't mean to go on about all the treatments I had, but just wanted you to know there are still things you can do. I know you're disappointed to hear that it wasn't completely gone; I was too. Keep fighting, and don't resign to the advice of one doctor who says, "It's bound to come back." Be sure to get opinions from those who will work to make sure that it doesn't or who are at least trying everything!!

Take care,
Lynn

[Jean]

Dear Tricia,
The radiation is very doable. Of course you will have some amount of fatigue
after treatments. What I found helpful was making my radiaiton appointments
as late as possible at my center. 8 PM. - or 8:30 pM..this way I had dinner with my family and by the time treatment was done (it is very fast - it takes more time to set up on the table) and I returned back home I would shower
get into in PJ's and snuggly down for the night and sleep..I found this did not
disturb my routine during the day and I was able to work and take care of
my house and family. If I needed an extra nap I would take it. The one time
I went early I felt wiped out by 2PM in the afternoon and I just could not
get anything done.

Attitude is important so do not let your dr.have you think you are doomed.
You have time to investigate, get several opinions, and make careful decisions. Say to yourself daily "I can beat this". A positive attitude will
give you the courage to go on, most important remember we are all here for
you.

Your Faith and the love of your family are also behind you.
I will keep you in my prayers.
Warmly,
Jean

[tousled1]

Tricia,

I had 26 nodes removed and 14 were cancerous. My initial tumor was 2.5cm with a 3cm invasiveness for a total of 5.5cm. I just finished my Herceptin (3 treatments short of a year). Before my surgery we knew that my lymph nodes were involved - just didn't know how extensively. My oncologist told me Friday that with my bilateral mastectomy, chemo (neo-adjunct), radiation and Herceptin that my chances of developing mets were 20%. I think that's pretty good odds. I had Herceptin while I was getting radiation and my radiation was to the chest and entire lymph node area (axillary, chest and collar bone).

[Caroline UK]

Tricia

Sorry to hear your news. I wrote you a long-ish message last week pre- your op, but we had a virus on our computer and it was lost, but I've been thinking of you.

My situation is different to yours but you asked about radiation, so I thought I'd just reply to that part.
I had 6 out of 20 nodes involved. I was given radiotherapy to the chest wall and supra-clavicular (neck) node area, 25 sessions. I'm fair-skinned and tend to burn easily in the sun, but only had mild redness and tenderness towards the end. I did get fatigued, and what worked really well for me was friends took it in turns to take me to the hospital every day. That helped a lot.

My radiotherapist decided not to irradiate under my arm. She said that recent studies have shown that it does not seem to improve the outlook, and because it increases the risk of developing lymphodoema she doesn't do it. This is what she felt was right for me, with my stage and grade, and obviously may or may not be right for you.

Best wishes to you and your family
Caroline

[Joy]

So sorry about the stupid nodes! Keep in mind that the doc doesn't know you or YOUR cancer well enough to know if mets are inevitable or not. And the other gals have already told you so muxh that is true about current treatments and drugs like herceptin. I think you can handle all of this really well and we are here for you. So is your husband!!!

[Audrey]

Tricia, sorry to hear your path. report was disappointing. Just wanted to reassure you that mets are not inevitable--I was so scared when I was diagnosed with a 15 cm tumor (huge!) and 11/24+ lymph nodes back in 2001. I walked around for a long time under a cloud of doom just waiting for mets to turn up everywhere. BUT, after chemo, radiation and Herceptin for a year, I am doing fine, almost 6 years later with No mets! Just take things one day at a time and don't start in with those "what if.." thoughts. Also have to say your message from your husband was so beautiful, you are so blessed to have him in your corner during this cancer fight! (Regarding radiation, it really isn't so bad, nothing compared to chemo--no needles, no nausea, etc.--just felt like a bad sunburn towards the end.)

[tricia keegan]

Hi Tricia!
What a lovely name lol!!!!
Okay I just had 3 nodes affected but want to tell you the rads were a breeze so I would do them for the extra protection as they were no trouble and just a little tiring from going each day.
I also want to mention my friend on another message board had 22 nodes affected,that was 20 years ago at age 37 and she is fine,no recurrance whatsoever.
This disease really is a crap shoot!!

[Margerie]

First of all Tricia- what a fabulous husband you have!

But I am not liking your surgeon. First of all, we all are battling cancer outside of the breast. If it stayed in the breast- we wouldn't need chemo! Breast cancer in the breast is not fatal. Well, anyway he could use some empathy training. And "bound to happen" arghh.

I had the works as far as radiation goes. I had 5 nodes and my rad onc said with that many nodes + in the axilla, there is a 30% probability there was cancer in my supraclavicular nodes. I had rads to my chest wall, axilla and collar bone. I did not have a lot of fatigue, which was a miracle since I did it along with my taxol and herceptin treatments. I did get very burned the last 7 treatments or so. Luckily- most of the burned stuff was on skin I couldn't feel anyway (surgery). It took a couple of months for the skin to heal. Now I just have an interesting tan line. And the radiated skin needs to be majorly protected from sun exposure. Sometimes I forget to put sunscreen on the collarbone area and it gets pretty red.

I was pretty po'ed when I found out I needed radiation after mastectomy. I got over it.

I hope it all goes smoothly for you. And I wouldn't hesitate to get a second opinion from a rads onc. You definitely want to have one that is a good fit for you- since you go to their office a lot.

[Tricia]

Hello Everyone
I just wanted to say Thank you all for posting and making me feel so much better. I look forward to hearing from the people that have gone through it all. Yes I am blessed to have a wonderful husband who really cares for me as a person. God has blessed me tremendously. The Surgeon didn't say any thing about have radiation to the collar bone..but I meet my radiation oncologist soon and we will see what he has to say about it all.

[LAURIE]

I had a very similiar situation as you. I was very disapointed to know how many nodes were involved even after A/C, I could not even feel my tumor anymore, so I thought my nodes were clear. I knew right away when I got the results that my staging went up, and got real depressed about it, but then I realized I have two choices, worry about it or move on. My treatment did not change because of my node involvement. I understand how you are feeling. After today I only have 7 more rads left. It is not bad at all. I get zapped 6 times.(six different angles each day) and it still only takes 20 minutes or so. I had the whole area, which it seems like you will get too, Maybe I get more because of having a lumpectomy. Just watch out out for the lymphedema, it is the only thorn in my side right now. I just hate this glove. Remember to keep heat away from your incision sites. Ask your doctor about incisional massage to break up scar tissue. I wish I would of known about it before. You and I (and many others with similar diagonsis) are in this together. We can do IT!! Someone else wrote me and said to "keep my chin up", for some reason this really made me feel strong (even if tears were pouring down my face). My husband has been with me every step of the way and it sounds like yours is too. We are very, very lucky to have them in our lives!!! I look forward to hearing your progress and sharing with you.

[dawn]

Hi Tricia,

Im stage 3b also 8/18 nodes 5+ cm tumor. Did all the treatment, rads to the collarbone, breast and underarm. Other than getting a little tired, everything was great through all the treatments. Im now on Herceptin for another 6 months, no side effects, besides a little weight gain. Taking Tamoxifen for 5 years unless, we change it at my next appointment. But it has been a year, NED and feeling wonderful. Take it one day at a time and this time next year, you won't believe how much things have changed and what you can go through and still come out smiling. Family and Friends were my stronghold through it all. Looks like you have a lot of love and caring around you, it will get you through this.
Take care

Dawn