Calling all TNs
Comments
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Meece - I cant' believe you weren't even given the option of a port. I know lots of ladies on these boards opted not to have one, didn't want another surgery, had good veins etc, but I was really happy with mine. Didn't want to get it out as I liked going to see the onc nurses to get it flushed every now and then. But it's gone and I just have my 3 monthly onc visits now.
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gillyone,
I still have my port...a bout of cellulitis convinced me to get it before chemo. I too like to see my nurses for the old flusharoo...I will keep mine until first of Novemer when I get rid of the TE's and pop in my new boobs.
meece...sorry to hear that you were not given options. I had some of that as well...might have my nipples today if I had a different doc. Best I can do is sort out my options for the future (fipples/tats/silicone vs saline etc...there are so many women on this board that would make fabulous patient advocates/breast care navigators!
traci
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lynn
i had chemo first my pet came back clean and i had dubble musectomy friday see dock next week all seams to be good. sore but glade the chemo and surgery is done. now lets heal and get the rads done!
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Hello, triple negs. Although I was diagnosed with TNBC in April 2010, I haven't joined this group until now because I've been busy with chemo and have focused on the Chemo June 2010 discussion group. But now I'm trying to find more information on TNBC and am coming up short. I did a search for books focusing on TNBC on Amazon.com, but zilch comes up. I've been keeping up on recent research papers, but it seems so odd that so little is written about this. TNBC isn't exactly a recent discovery. I'm resorting to textbooks about the basic biology of cancer instead. If any of you have reading recommendations, I'd love to hear of them.
I am 40. I found my lump on April 16, 2010 (like other stories on this thread, it came out of nowhere!), had it ultra-sounded and biopsied on April 20 and got the diagnosis on April 21. The tumor was 2 cm, ER/PR negative, HER2 negative, Grade 3, Ki-67 at 90%. I had a lumpectomy on April 29 and started chemo June 1. I'm in a non-blind Avastin clinical trial that is studying three groups, TAC only, TC only and TC plus Avastin, but was randomized into the TC only group. I have finished four rounds. I'll have radiation after chemo is over.
My first round was rough. I had nausea, vomiting, diarrhea, constipation, bone and muscle aches and extreme fatigue. The onco nurses were convinced that I had a bug of some sort that made the experience extra horrible. But the doc switched my anti-nausea meds to Emend and things have been fine since. I lost most of my hair but still have eyebrows and eyelashes and some finer hair on my arms. No mouth sores, no discoloration of the nails, only minor bouts of numbness in my fingers. I've tried to stay active with cycling (did two days of RAGBRAI), personal training sessions, and yoga. I get the Neulasta shot the day after each infusion, which gives me muscle and bone pain, but I take Claritin and ibuprofen to help with that. What I hate most is the steroids in the pre-chemo drip that has stunted all weight-loss efforts.
It's comforting to have this discussion group available. Thanks, Titan!
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laurajane: I was told no antioxidants for a 3-5 day period while doing chemo. Other then that, I didn't have any restrictions. I took only 1 glucosamine a day, and I take so much from my integrative dr. You can find it in these posts a few pages back or you can pm me and I will give you my list. Every onc has a different opinion re the supplements. Some are do nothing and some are less strict. I chose dr's who were a bit more progressive (UCLA Westwood even has an integrative oncology unit).
greysandy: I am a uni, too. I had my chemo first and my MX on 3/20/10. I was never given the option of a port, either. I thought that it was only for the positive girls not the TN's! That is smart for you to do. It's almost impossible now to get a needle in my veins. they all run and hide now.
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hollycolorado: Love your wig! I did tons of research and the only thing I found was the TNBC foundation site. In fact, I used to go there before I started coming here. I found more support thru this site then the other. I credit my cancer to BC pills and years and years of dr's messing with my hormones.
laurajane: I just had a thought: You should check out the alternative threads as there are many things you can do to help you thru chemo. My pre-chemo killed 100% of my cancer, so even though there was still a mass in my breast, even though I took tons of supplements between treatments, when I had my MX it was completely killed by the chemo.
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Hey ladies! You have been busy here..My dh and I went away for the weekend and now I'm trying to catch up!
About the port...the onc said I would have to have one but I talked him out of it..I know that some people liked theirs but I just said no way, no how....The nurses said it would have helped me from being stuck 8 times but I feel and still feel that they should be trained enough to stick me without much pain..and they did! Some were better than others and they were the ones who stuck me.
Welcome Holly..love your pic!
I don't know if there are any books specific to TN...but you can find out alot here. That may be best anyway because if you use Dr Google you can find alot of scary stuff...it's best to avoid it.....not to say that TN isn't scary but any kind of cancer is...you can freak yourself out too much reading some of that stuff...
When I was first diagnosed I thought I was going to die immediately...took awhile to realize that no...I wasn't going to die immediately..or maybe even in the next year or two...I never felt sick at all...if I hadn't felt the lump myself I still would be wondering about it....
farfaith..good luck with your rads...you will probably find them sooo much easier than chemo...let us know how they are going!
Gilly..my "3" month onc visit is Tuesday...I'm not even freaking out about it...to tell you the truth I'm not even sure how many more 3 month visits I have....I think at least 2 more years...
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Count me in gals. My stats are in the sig.
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Mitymuffin: I hope the Acupuncture helps. I truly believe that it was a big part of making it through chemo without incident for me.
Laurajane: If you want to PM me (I don't know how that works, but I think it's an option), I would be happy to tell you some of the natural remedies that I used...I told my oncologist about all of them, and he was amenable to most but did not put much stock in them, although I told him how much better several in particular made me feel. Anyway, I would be happy to help out if you want any more information. I am currently on a combination of the Budwig diet (lots of flax oil and seeds), an alkaline diet, and in general have cut out all caffeine, sugar, processed foods, white flour, etc. I do enjoy the occasional glass of wine still, but I only allow myself a few glasses once a week, which seems reasonable. I am also on a few supplements to boost the "anti-cancer" quotient as much as I can...it helps me to think that I am doing something proactive to keep this thing from coming back rather than just passively standing by. I hope you are doing well... it's a tough road, but somehow everyone here seems to be so strong, and it helps to know that so many are out there facing the same thing and fighting it so bravely.
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Good morning ladies. Hope you all had a good weekend. Just wanted to share a little story. Yesteday I took my son to the mall with my husband to get my son school clothes (he starts Kindergarden in a couple weeks:() We were having lunch in the food court and a woman came up to me and asked me if I had breast cancer (maybe the hope golf hat I was wearing gave it away) Anyway she said she was not trying to pry but just wanted to say good luck and she had gone through it and was post treatment one year. She is doing great has about 3 inches of hair and has had it cut once since treatment ended and feels terrific. She is in her 50's and a TN. She was very pleasant and just wanted to say good luck and contratulations on fighting this disease. Like I said, just thought I would share a nice story. I was kindof taken back at first but felt good about it after.
Jen
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Thanks, Titan. I'm not frightened of what may be out there. I've pretty much read it all already, and nothing freaks me out anymore. I am, however, shocked at what few resources there are for people with triple negative breast cancer. Maybe I'll write the book myself.
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Holli - there is a website/blog called "Positives about Negative". I think you'll find if you Google. The person who operates the site provides a lot of good information. Also, I saw a thread here on BC.org where she's looking for women to interview for a book she is writing. If you can't find the website, let me know and I can find the link and post here.
Sherri
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Here is the link to Positives About Negative Blogspot: http://hormonenegative.blogspot.com/
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Sugar & Meece: What a great link! Thank you!
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Hi ladies: Just been catching up on your posts after a 5-day trip to Bahamas with DH, celebrating the end of treatment. A lovely break! Wishing you all a great day.
(unklezwifeonty: nice to see you on the board.)
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Luah! Wow, the Bahamas! Congrtulations on being done!!
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Well hello to all! I feel really stupid right about now. I found my lump myself in June after 2 neg mams. Biopsied,ER+ HER2 1+, went to moffitt in Tampa (I love them) had bilateral mast 2 weeks ago.three nodes neg All their surg path came back TN. 2cm stage 1c grade 3. So I'm thinking yeah! No Tamoxifen no rads, no need for chemo cause we took both breasts right? Now suddenly I have an onc appt. For chemo. So where exactly could breast cancer come back if breasts are gone? STUPID?
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Well hello to all! I feel really stupid right about now. I found my lump myself in June after 2 neg mams. Biopsied,ER+ HER2 1+, went to moffitt in Tampa (I love them) had bilateral mast 2 weeks ago.three nodes neg All their surg path came back TN. 2cm stage 1c grade 3. So I'm thinking yeah! No Tamoxifen no rads, no need for chemo cause we took both breasts right? Now suddenly I have an onc appt. For chemo. So where exactly could breast cancer come back if breasts are gone? STUPID?
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Penny - I was in your exact situation and did quite a bit of research on TNS before undergoing chemo. TNS tends to be very aggressive, so the oncs like to throw everything they can at it. They are not sure what feeds it, so they can't do the five year pill like for another type of breast cancer. From what they tell me, the cancer could reappear in the lymph nodes or around the scar from your mastectomy. My onc gave me taxetare and cytoxan. Listen to what your onc has to say. Get a second opinion if you need to. Let us know what happens.
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What Claire said but my onc added that any other cancer cells that may be floating around my body could be wiped out with the chemo. Yeah it stinks, but it's very doable and for myself I wanted to battle this thing with both guns smoking!!
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Penny...I think that also if the tumor is over 1 cm chemo is sometimes a given also....let us know what you decide...we will help you!
Just had my 3 month check today..I have one more year of 3 month check ups and then it goes to every 6 months...but anyway, the onc gave me quite the breast exam...not just the breasts but up under the arms and around the neck...it really kind of hurt but he said he didn't feel anything so I'm glad he did..
I just got felt up last week by the obgyn!
Luah...5 day trip to the Bahamas! Sounds wonderful!
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Thanks for all the info guys I am so glad I found this forum. I go next tuesday (17th) I will definitely let you know. God bless all of you!
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Thanks for all the info guys I am so glad I found this forum. I go next tuesday (17th) I will definitely let you know. God bless all of you!
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Penny..glad you found us too...no one really wants to be here but we are and hanging out with everyone helps the whole ordeal...My SIL told me about this site and I lurked for awhile and then joined...found out lots of info and also made alot of friends...cried some too, laughed alot too...sometimes if I was just so frustrated or scared I would post my feelings and someone would help me out..and I would feel better instantly....
I also like being informed when I see the doctors.. sometimes they just don't tell you enough..
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Well, Aug. 7th, 2009 was the day I went for my mammo, ultrasound, & core needle biopsy. I continued to be concerned but optimistic until my actual diagnosis, which will be one year ago tomorrow (Aug. 11th). So, I guess tomorrow will be my official 1 year "cancerversary".
WTF are you supposed to do on the day that changed your life forever? Celebrate by getting sloshed or try to forget by getting sloshed? What to do, what to do... f*ck it (I'm beginning to think that should be my signature line for those of you who have read many of my posts)--- I'm going to go sailing ("f*ck it" is already the banner on my cell phone).
My warrior boob is a bit more tender these days... not sure why (and I am beginning to get those faint twinges of fear again). I am scheduled for a 6 month mammo at MSK on Sept. 1 and hoping I just pulled a pectoral while carriage driving or sailing.
Always something to keep my (previously) steeley nerves on edge.... anyone else have sore boobie fears? Mine is deep below areola. Could be pulled pec; hopefully nothing else...
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I hadn't checked in for a few days and WOW this thread has been busy.
I had a hard time finding more information on TN too - very frustrating. I did come across an article about 6 months ago on a doctor doing research on TN cancer. The article talked about how TN cancer was treated as basal cell cancer and it wasn't until not too long ago that they realized that there is a difference between basal cell cancer and TN cancer. I wish I could remember where I saw the article or who wrote it, but maybe by trying basal cell - TN or basal cell breast cancer in google more information will show up.
Welcome to the ladies that have just found this thread - you will find a great group of women and a lot of information.
JenC - I had a similar experience, but it was a sweet gentleman at a restaurant that came up and said that he had just finished chemo and could tell by my scarf that I was going through chemo. He just wanted to give me a hug and good wishes. I remember feeling uneasy going out that day and his good wishes were just what I needed.
Titan - congrats on the good check up visit.
Meece - thanks for the link.
Jenn
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Penny: I had a left side MX a preadjuvent chemo 6 x Taxotere/Cytoxan. I didn't have any other options and TN's respond really well to chemo. It's not great, it's not fun, but it did the job. My feeling is the chemo killed it all and the MX removed what was left of it, all dead cancer cells.
Titan: I have my 2nd 3 month check up on Thursday and then my MX exchange the following Thursday.
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Thanks for the reference to the Positives about Negatives link. I had seen that before. The author is actually a friend of a friend in Des Moines, where I used to work. (Small world, huh?) I'll get in touch with her.
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Holli: Very small world! That is fantastic!
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Good morning ladies, boy this thread has been busy. Welcome Penny. I am going for my chemo again tomorrow. I am keeping my fingers crossed that all goes well. I should be done in October. I still have to decide if i do the MX or if i keep monitoring. I have a lady on My cancer support group that she had MX and the cancer came back on her chest wall. I do not know what to do............ Any suggestions?
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