Calling all TNs
Comments
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maybe her diagnosis was worse
some dont know that there is a difference
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True, some don't understand there's a difference. I've found also that many people who don't have cancer have so many opinions about treatment. They email such inappropriate stuff. At one point with one very good friend, I had to tell her, Please stop sending me articles. I've done my research and have already made decisions re treatment.
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TifJ- excuse me, but WTF? What kind of "friend" puts that kind of doubt into an already scared person's head one week before treatment? Does this "friend" have a medical degree? Is it in oncology. I think not (to both).
Your treatment is *exactly* what many of us have had for this type of diagnosis. Have we all been mis "treated?" Of course not. Your regimen sounds completely reasonable for a node negative 1cm tumor. Tell your friend to keep her opinions to herself. With "friends" like that who needs enemies?
Sorry, but I have a reputation as a "shoot from the hip" type of gal in here. Good thing your friend is not in my sights.
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Tiffany - like the other ladies have said it seems like your treatment is appropriate for your diagnosis. From what I have seen oncs tend to be a little over aggressive at times but it is for our own good. Better to be over cautious then not aggressive enough. Best of luck with your treatment. Keep us posted.
Jen
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LJ - I just wanted to send some happy fall thoughts your way and let you know I'm thinking of you. I wish I had more to offer or some great words of wisdom, but right now I don't. (((hugs))) to you and your family and I'm glad to hear you're doing well.
I seem to have developed high blood pressure for the first time in my life, even through chemo it stayed fairly low. Not sure what's going on, but will be following up again in 2 months and if nothing has changed I'll have to take medication and maybe have some tests run- ugh!!! I am walking daily and am watching what I eat, but will now have to be extra careful with sodium.
Hope everyone is having a good evening.
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Tiffany: I have a similar situation, but no one is telling me the recommendation isn't enough. It's myself who wants to make sure it's enough. I feel so much better after reading your post and the other's who have responded. The only IDC they found on me was taken out at biopsy and they DON'T know how large it was! We're all guessing fairly small, but the onc says she can't be sure it was under 5 mm so is suggesting the SAME treatment... 4 rounds of TC. I had no nodes involved either... and the only thing found at final pathology after mx was DCIS less than 1 cm. I asked about Carboplatin, and my onc seemed to feel the Cytoxan was recommended but said whichever I wanted was fine. I asked about dose dense, and she said there was no need... no nodes... very early. I asked about adriamycin and she said that was overkill... not needed. And I asked if I should get the 4 rounds closer together (she recommends every 3 weeks)... again she said there was no need.
I am getting a second opinion tomorrow, and I kinda hope they agree with her recommendation because otherwise I'll be confused "again". I have looked up the 4 rounds of TC, and a lot of people get it. I just wanted to have peace of mind, if there is such a thing, and see what a different onc would say. Each onc is different though, and it's quite possible the one I see tomorrow may have a completely different approach. But I believe, after what I've just read from others here, that we'll both be just fine with this treatment!
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Hi all of you wonderful women. I hope you all had a great day. Lynn and Monik I hope your surgery went as well as mine. Isn't it great to have the motherlode out of you? It sure felt great to me. I believe my petscan today will come out clean as a whistle , I get my results tomorrow or Thursday.
Alright Hhfhiedi waiting for my daily dose. Loved the cat. I actually worked in a grooming pet store for a short while when I was a kid, man, sure made me laugh out loud, literally. Thanks.
Jenn3- I was diagnosed with high blood pressure and they were going to put me on meds but then I got cancer and they forgot about it. LOL. My sister suggested I try fish oil (the real stuff 'Nordic Naturals' keep it refrigerated not the capsule baloney) It's expensive but I combine that with grape juice (The real stuff with no sugar) anyway my blood pressure is now fabulous and and has been since last May it only took about two months. I'm not a doctor but my blood pressure had been increasingly high for the last two years. They started with "Let's keep an eye on it" to " We need to talk meds" then I mentioned my lump. Anyway it is better than normal now. I hope it works for you too.
Watched that video today from the Discovery channel. It was extremely uplifting to me. Wow! The remission of 3 years ( not 3 months) sounds like a lifetime to me. "They" are coming out with new treatments all of the time looking forward to 3 becoming 10 and more.
The best thing that happened to me today was having a wonderful dinner tonight with my son and sister. Just having a good time laughing and enjoying being together. I'm looking forward to seeing my daughter and grandson tomorrow. Life is good until we realize how GREAT it really is.
Sweet dreams!
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Hi ladies, I am writing from the hospital bed. My surgery was very smooth , the pain level was ok up until 5 pm. They gave me new meds and now is under control again.
Thank you for all well wishes. Looks like I will be discharged tomorrow late afternoon/evening. Laurajane so glad that you are doing ok.
Lynn: How are you feeling????
Good night ladies
Monika
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For LJ-
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Tiffany: NO ONE! Can tell another person what treatment is best for her--You have to trust your onc and if you don't you should get a second or third opinion. That said, my onc only wanted to give me 4 x TC but my former BC insisted on 6. TN's are very responsive to TC and you are at such an early stage it it probably aggressive enough. Mine tumors shrunk quite a bit after only 4 x and the addittonal 2 did nothing really. Best!
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Laurajane: Glad to hear you are still up and full of love an light! Big hugs and hoping everything is clean on your scan! Best thing that happened today is hearing that you are doing well!!!
hhfheidi: That is soooo cute! My friend sent me a youtube video of two cats who play "paddy cake". It's hilarious... now if I could just figure out how to post it here!
MonikaV: Glad to hear they are letting you go home tomorrow. Keep us posted and may you have a good night's sleep!
Lynne: Hope you are doing well, also!
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Cute Cats playing Wing Chun Sticky Hands! http://www.youtube.com/ Looks like my two cats Goo and Yat Jai are playing patty cake or Wing Chun Sticky hands! They do this all the time and I finally caught it on video. When they realise I'm filming, they stop and then resume when they think I'm not looking. Cheeky cat :-) 0 -
MonikaV - glad your surgery went well. Hope your recovery goes smooth.
Does anyone know if us TN's get onco typed? I keep reading about onco type scores but my onc never mentioned it to me. Just curious. If we do I obviously want to get it:) Thanks
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JenC: From what I've heard and read, the oncotype score is considered irrevelent with TN's because TN cancer is just about always high anyway. Now, that's just from my own research. I have read a very few people who have had the test, but it's rare we get it. Actually, I'm going to a second opinion today and will ask that very question! I'm also going to ask about any other tests. I think there was one for Ki67?
I've developed a small seroma on the right side and it's a little ouchy... not huge... but it's there. Needless to say, that breast actually looks fuller and nicer than the left (no seroma)! But it's an illusion I believe. Will be glad when these iron TE's are out eventually...
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Thanks for the input everyone! I truly think my treatment is appropriate as well.
Angelisa - please let me know what you find out during your second opinion.
Heidi - don't be sorry! You're absolutely right. She is out of line (especially) 2 days before treatment begins! Thanks!
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I am glad to read that most of you are in agreement that TifJ's treatment is appropriate, as next Tues I will also be starting TC, 4 rounds. My Onc told me that Adriamycin was too toxic to the heart and not necessary for me. What do I know, I have to trust the expert! If any of you "experienced" helpful ladies has any suggestions or helpful hints for dealing with this treatment I would be greatly appreciative, currently I am just nervous and clueless....
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Hi Blindsided - welcome to the thread! I had TC and will send to a private message with tips onthe regimen tonight after I get home from work.
TifJ, I'll also send TC tips to you.
I hope you're all having a great day ladies. Today is the one year anniversary of when I got the awful call from my surgeon's office with my diagnosis. Onwards and upwards and I'm now heading off to a nice lunch!
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Thank you Sugar . I would appreciate some tips! I'm jealous- I'm sitting here eating cream of chicken soup and you're going out to lunch!! Guess I need to send the hubby to the store while I'm at treatment tomorrow.
Blindsided - Looks like we will be going through this together, I start Thurs, I am super scared too, but I have to remember I have 2 little ones (5 & 8) that need me. Keep me posted on SE's (if you have any!!) and will check in with you too! HUGS!!!
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MonikaV: Good to hear you are doing well. I have been thinking about you.
Thank you everyone for the well wishes. I had surgery Monday at 9:00 and it went well. I went home at 2:30 that day. A nurse comes each day to check me. I have something called a pain ball that delivers medicine into the wound area. That area is numb so I have not had a lot of pain. Did anyone else have this? I had not heard of it before.
Laurajane: It is good to hear from you. I hope I do as well as you.
Heidi: I love your cat pics.
Well I am sleepy now. Hope everyone has a good day, Monika, hope you get to go home today.
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cc4npg- Ki67 is a proliferation factor. Mine was 99%, which meant that 99% of the cancer cells in my tumor were proliferating (dividing)...fast (TNBC is typically grade 3 cells, remember?)
I use to stress over that value until I was convincingly told by my Sloan Kettering surgeon that MSK doesn't even bother determining it. It's too variable: one active area of a tumor can vary from another area within the same area. I stopped worrying about it after I heard that very logical explanation.
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So I had a second opinion today. I asked about the oncotype test, and it isn't recommended for triple negatives and is only used mainly for hormone positive people with early stage to determine if chemo is necessary. And yes, Ki67 doesn't do us much good because the majority of TN's is grade 3 anyway. I went to the state university for my opinion, and the onc's there pretty much agree with my first onc... 4 rounds of TC every 3 weeks. The onc agreed adriamycin would be overkill, and not standard of care for such early found BC. Same with dose dense. 4 rounds of TC (C being cytoxan) is standard of care. There have been some small studies done using Carboplatin, and those small studies have shown very good preliminary results for TN's response, but it is not considered standard of care at this point for early stage cancer and they're waiting for further larger studies. However, my case is of interest to them and they want to test the tissues again to verify I did actually have IDC and not just DCIS. I can't imagine I had only DCIS... the tissue from biopsy was stained to see that it was invasive... and when I said this to the onc, he said that it was more of how the staining was interpreted, thus the interpretation may have been wrong. Well, it'd sure be cool not to have to have chemo but I'm not holding my breath. So I'll know something more on that in a couple of weeks. I wish I was closer to the university because I really liked them better, but I can't see driving slightly over an hour one way in the winter to have chemo. He agreed and said the treatment drugs were the same no matter what area of the country you're in. They were really nice and I'd highly recommend them for a 2nd opinion to anyone. Oh, also he said there is a clinical trial for TN's with DCIS only and if I end up falling into that group, he will let me know about it. I'd still be surprised if it was all DCIS, not that it couldn't happen... talk about a miracle if it did...
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Angelisa- great post. that makes me feel better about my treatment. I defintely had both IDC and DCIS. I have to drive about 45min. to my cancer center-it sucks. Well I hope your further testing comes out good for you!!
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TifJ, cream of chicken soup sounds yummy, especially on a cool, windy day. I like it with oyster crackers. And I don't have any of that soup in the house. Adding that to my grocery list...
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My tumor was DCIS. I had chemo because it was triple negative. I thought all TN cancers were put on a chemo regimen not just IDC?
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Hmmm... I'm not sure Claire... but the onc today did mention a clinical trial for DCIS. I know a lot who haven't had chemo if the IDC is confirmed less than 5 mm. I think it really depends on the oncologist perhaps. Maybe some other ladies know more about that. I only researched the usual treatment for basic triple negative prior to my surgery, since I felt I would fall among those.
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Best thing I did today: Went to a great lunch. Had Filet Mignon - first real steak I had since started chemo. My taste is back and it tasted very good. Good part, I didn't have to pay for anything, a vendor paid for the lunch.
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Blindsided and TifJ - as promised in my post earlier today...I just sent you both some tips on getting through TC.
Like Swanny the best thing I did today was have a nice lunch (a vendor luncheon as well) and had a wonderful warm seafood salad (grilled scallops, shrimp, mussels, calamari). It was so good. And tomorrow night is the first in a series of five monthly cooking classes that I'm taking. One thing this diagnosis has done for me is got me doing the things I want to do instead of putting things off. Oh, and I also just booked a trip for our family to go to New Orleans for New Year's.
I always check this thread as I enjoy hearing how everyone is doing. And, of course, I like to see what Heidi has in store for us....
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Lynn and Monika so glad your surgery is over and hope you both heal fast. Isn't it great to have that out of you?
Hhfhiedi and MBJ thanks for the laughs. Almost makes me want a cat. Almost. LOL
I had a seroma start last Saturday. Painfull. But my surgeon recommended I let the body reabsorb rather than use a syringe to drain it. He thinks that can lead to infection. Actually it is much better now. I was hoping to have my last drain removed tomorrow but I am still having too much fluid between 30 and 60 ML a day. I get to go in for a check-up though. I started leaking today at the drain exit site so I will have that checked tomorrow. No results on pet scan yet. Although I had a dream last night that my doc said they were clean and no sign of cancer I guess I will find out tomorrow. Lynn I am still kind of numb like, it sure is a strange feeling.
I wish I had known all of you before I did the AC. I think especially because it didn't do anything at all against my TNBC. It's scary to think what it may have done to my heart. Although I like to think that my heart is even bigger and fuller now than ever.
Sugar- Move on and forward love hearing that. I hope you had a great lunch.
TIFJ and Blindsided I had Taxol and it wasn't bad at all. I craved chocolate like crazy. I am continuing to loose my nails but my hair started growing back and even my eyelashes are slowly coming back. I had my last one about 4 weeks ago. I did the weekly though. I hope it goes well for you with few if any SE's. I know your fear though, but you can do it.
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LauraJane - there are many TNs with node involvement who had AC/T, often DD. Noone could predict you would not respond to the adriamycin. It is pretty much a standard of care. So you did what was appropriate at the time.
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Great to hear from you LJ! I have 2 cats..I love them both dearly..you can have both dogs and cats you know...I would like a dog but my DH and I are both away all day and I just don't like to leave a dog alone all day..Cats are very independent...They act like they don't care if you are away or not! Some cats are so very loving and then some of them just stick up their tail at you and walk away..they are funny animals!
Ok..I decided it was time to get rid of my freaking spare tire..did 25 crunches today and ran 2 miles..this tire has GOT TO GO! I had a personal health assessment today and everything was perfect..except for my weight..all that weight is in my stomach area..I'm not ready to look matronly yet! NO NO NO...
LJ..the heart issues from adriamycin is not a guaranteed side effect...When I had my heart tested to see if it was strong enough for adriamycin the tech said that eventually the heart would pop back..I hope so!
What do you do..take chemo to hopefully get rid of cancer cells and risk the side effects..or not take chemo and possibly have the cancer reoccur or mets..it's horrible that we have to make this choice but that is all that is available now.
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