Triple Negative Breast Cancer Support

Hello Carol,
I just joined and see that your post is a month old but I hope you're still monitoring this. I was diagnosed in June '09 having IDC, stage 2a, grade 3 also. I had a lumpectomy( a pretty big one), chemo of 4 taxotere and 4 cytoxan. I refused the adriamycin. Also, 30 radiation treatments, 5 of which were a boost and finished that Jan 19. I am having quite a bit of fatigue from the treatment that I can't seem to put the brakes on. The doctors tell me to give it several months. Did you have this much weakness and loss of energy? It's so good to meet you, I don't find many women with triple negative.

Hello Stardog....good to hear from you!
Oh yes, I am 4 months out from my last radiation and I still get tired very quickly. I just have to sit down, rest, and then try again. I've been told this fatigue can last up to 5 years. Of course not as bad as now. It's recommended to take an afternoon nap.
I have a wonderful site for you to visit and I hope join. The people there are wonderful and all of them are triple negative.
www.tnbc.org clk on forums. I am Carol(Tenn) and I keep up the Spiritual Support thread there. I'm looking forward to seeing you there. I started this so I could reach others that didn't know about that site.
Love and Prayers,
Carol

Hey Carol,
So glad you are still on here monitoring this. When I clicked on www.tnbc.org it sent me to a church in Dallas. I googled triple negative breast cancer and found the site you are on www.tnbcfoundation.org and I'll check it out. I see you are from Paris, Tn, not all that far from where I am in Missouri.
I have a question for you if you feel like answering. How did you know you had a recurrence? Did you notice a lump or was it from the results of tests? I hope that's not too nosy.

Good Morning.

I am so sorry I forgot the foundation part of the address....it's either chemo brain or old age....but I never admit to old age..lol
I found the lump myself and went to surgeon to get it checked out...he thought it was suspicious so out it came and sure enough it was cancer again.
He scheduled another surgery for a recision to get clear margins..that was last July. My scans in January came back clear. I go for routine check up with my surgeon in July. Had a visit with onc in March and blood work was good. Just one step at a time.
I see we have a chat room on tnbc site. Come join us.
Hope you have a great day....
Love and Prayers,
Carol

Thanks Carol,
I'm not too sure what is a lump anymore or continuing scar tissue build up. Was just wondering. Are you saying that you didn't have chemo the second time? Which chat room on tnbc are you talking about--any of them?
Thanks again.

You can go to any of them..the one that I contribute to is the Support Groups....then Spiritual Support. But I post on a lot of them. Send me a pm there so I know who to look for.
And to answer your question...no, didn't have chemo the second time. I was given the gold standard in chemo the first time. Onc said if it didn't kill all the cancer the first time, it won't do any good to do it again.
I know what you're saying about scar tissue. When I found my recurrence, I thought it might be scar tissue and I went into my surgeons office ready to hear just that. I was sure surprised when he said we needed to take a closer look at it. It wasn't a nodule as we expect lumps to be...you know...round, hard, peas. Mine was elongated and painful. He took it out and biopsied it and it was cancer. He then went back in and did a recision to get clear margins.
Hope this answers your question and don't mind answering any others you might have.
Have a great day,
Love and Prayers,
Carol

I go for a check up at the radiologist in a couple of weeks. I'm not looking forward to that. I'm hoping that what I'm feeling is just scar tissue.
I will join tnbc and I will send you a message to let you know I'm there. What a journey we are on. Glad to know you, Carol from Tn.

Hi Carol and Stardog, I am a fellow triple neg gal like both of you. I am 3 years out from the end of my tx (my story is on my profile) and I can tell you both that I am still having fatigue after all this time. I don't know if it is a result of the chemo or the rads, or both. I can pretty much do what I need to do, but I have to have a nap everyday now and that is something I never did before. In fact, I worked 12 hour shifts before, but I am retired now.
Carol, what you have said about your recurrence really scares me. I can't do self exams now because I am so full of scar tissue and I have to say it is painful and has always been since my surgery in 2006. I see my rad onc in June and a new onc that I don't really care for in Sept and I just trust that one of them will be able to tell if anything suspicious appears. I am down to annual checkups with each one of them now. I guess I put my worries out of my mind most of the time and I have moved on with my life.
I don't get on the boards much anymore, but will check back occasionally. I hope you get many more members in this exchange. I also have been lurking on the tnbcfoundation site for several years, but rarely post.

Hugs to both of you,
Bonnie.

Hello BeeCee,
I know what you mean about the scar tissue. I thought mine had finished and was getting better in February, a month after I finished radiation therapy. I saw my surgeon at that time and his nurse looked at the breast and said 'that will scar down some more.' I wished she hadn't said that. It wasn't long after that it started changing again and different scar tissue started forming, mostly along the incision line. And it is painful, also.
Sorry you don't care for you new oncologist, is there a chance you could see someone else? One of the doctors told me that I didn't have to like my surgeon but I had to like my oncologist.:)
Take care,
Patty

Hi Patty, thanks for your reply. It's very nice to meet you. I had an onc that I just loved all through my tx, but then I turned 65 and lost my good insurance and am now on a Medicare Advantage plan (basically it's still Medicare) and it's very difficult to find an onc that will take that insurance. I switched to a new one and I really thought I would like her, but then after one year, she left that practice and I had to switch to yet another one. He seems OK, but he didn't even examine me when I saw him in Feb. Just had my blood drawn, that's all. I will see him again in Sept, this time after my mammogram, so I will give him another chance. If he doesn't examine me, I won't go back to him. I still see my rad onc once a year and I love her! She always assures me that it is nothing but scar tissue and says everything looks just like it is supposed to.

You are still not that far out from the end of your tx, so you must give it some time and try not to worry. I know, that's not easy. But, it will get easier with time. I don't think about the "what ifs" nearly as much as I used to.

I've always heard that if you have a recurrence, it most likely would not be in the same area, but in a lymph node or other area, but Carol says that's where hers was. That concerns me greatly, but I'm almost to the magic 5 year mark (15 months away) where we are supposed to be mostly past the risk of recurrence.

The best of luck to you. Sending hugs your way..........

Bonnie.

Good Morning Bonnie and Patty,
So nice to see you both.
Bonnie, I was told the opposite...that if it were to come back the surgery site would be the first place and mine was.
Now we are not talking about mets..we are talking about recurrence of the primary tumor. That's totally different. In my case, the chemo didn't work as it should and that does happen sometimes.
I just went to see my surgeon yesterday because I found some suspicious lumps..he reassured me that he thought they were just changes in the tissue due to 3 surgeries, chemo and rads. We are going to watch them to see if there are any further changes. If so, we'll probably have surgery #4.

Bonnie,
Doc told me yesterday not to touch my lumps again for 30 days. He said I could make them swell from constant prodding. He also said I would become unable to detect small changes because of the constant feeling of them. I'll wait the 30 days and I will surely notice a difference if there is one.

It's a beautiful day here in West Tennessee...I'm going to get out and enjoy it...."This is the day the Lord hath made, we will rejoice and be glad in it." Psalm 118:24

Hope to hear from you all soon.
Love and Prayers,
Carol

Bonnie, I think it is so wonderful that you are 3 years out, time goes by so fast doesn't it. It's been 10 months since my diagnosis and I'm thinking I need a vacation. I think I'd like to see the Smokies again, haven't been there in about 30 years.

Carol, did you have any trouble with your skin healing after surgery? I think I'm understanding that you had a surgery after radiation, right? My radiology onc just about had a stroke when I mentioned I might eventually have some plastic surgery. My surgeon had suggested it in the first place but the rad onc said 'not on radiated skin!'
Thanks,
Patty

Good Afternoon...
Patty,
I had mastectomy, radiation, then recurrance, lumpectomy, then surgery to get clear margins, then rads again....Some rad oncs don't advocate second rad...but we didn't do a whole breast...just electron beam directly on the area where lump was.
I live in Tn and go to the Smokies quite often One of my favs. Where do you and Bonnie live??
It's beautiful here today. God does provide.
Love and Prayers,
Carol

Don't know why that came up anon...oh well, it was just me...