Calling all TNs
Comments
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Yes..I don't think my lumpectomy really had anything to do with my treatments...or certainly they would have given me that option..don't you think? I hope so...I just know that at first I was told lump with rads and that was it..then they found out I was tn..and there come the big guns!
You guys are freaking me out about the heart thing...I do have heart disease in my family....my dad's side but so far so good..there are things you can do to help your heart..like taking heart healthy supplements and exercise to get the heart rate going... We walked 2 miles in 16 degrees today...it felt good...they tested my heart before chemo and it was just fine..hopefully it stays that way.
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Mine was invasive and I had 6 TAC
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Agree that lump vs Mx would have no bearing on chemo choice. Surgery is a local treatment, while adjuvent chemo is a systemic treatment to fight lingering (and possibly circulating) cancer cells. (And studies have shown lump/radiation to be equivalent in outcome to Mx anyway.)
Titan, don't borrow trouble worrying about the heart effects, which occur in a very small minority of women. I'm certain they would not have given you A if they considered you high risk.
In Canada, FEC-D seems to be the regime of choice for women with TN or node positive. I brought up dose dense AC and weekly taxol with my onc. She considered it equivalent.
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Titan:
My stats are like yours and my onc also wanted to hit it as hard as possible. I chose the middle of the road by going with the A/C & T, and I had no node involvement either. I would have gone with the TAC, but being a widow and supporting my grand-daughter, she felt I might be down on my arse longer and need to miss more work than I did (ha! like I wasn't knocked on my butt with the A/C & T). I too had the heart testing prior and and after, and so far so good. She would have done the T&C as well (that was her third choice), but said she was glad I went with the A/C & T as it was stronger. Who the heck really knows, even they don't!
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Thanks Luah..I'm not too worried...it's one of those things..you know? I'm hoping that IF a heart issue would come up that it could be fixed...and it is said that this issue may come up many years down the road..well..I will take that!
Thanks Linda! we certainly are almost identical as far as time of diagnosis and pathology aren't we?
I was never really given a choice about my treatment..I mean, I knew I could refuse it..but the first visit to my onc he just said ..here is what we are going to do. 4 x AC and 4 x T..dose dense and gave me lots of info. about the se's of each and I just went along with it...today I know more..thanks to you guys and BCO but I still wouldn't change a thing.
Two years ago today I found that freaking lump....and here I am..sipping a little wine, talking to you guys, and we are grilling out t-bones tonight...in the 16 degree weather! hey any excuse to celebrate right?
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HeidiToo: My onc told me the same thing I just wasn't sure if it was true for lumpectomies.
Titan: I have a heart murmer, very slight, but I am glad my Onc said it was too much for me. It sounds like you did fine with your treatments and that you had no reactions with your heart so you should be fine. Since all of the things we TN's have to do to prevent BC from returning also apply to having a healthy heart, you will do great.0 -
Titan...
I had the same diagnosis...They found the lump, biopsy, cancer diagnosis, lumpectomy a week later...no c in nodes, so my BS thought I would be a candidate for just rads. I had a "spacer" in place for savi radiation and then the diagnosis of TN.
So here I am, building bird nests out of my quickly shedding hair! To be shaved tomorrow or Tuesday!
Hope you all have a great week!
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Titan - the heart risk is very small - I think my onco told me less than 2% have problems. I have a strong family history of heart problems and have had high blood pressure for the last year, which put me at an increased risk. I was already anti- AC/T before even meeting with my onco, but when she told me the HBP made it higher risk for me, I was pretty much done. Thankfully I had negative nodes so I had the choice of TC.
I had a lumpectomy. I don't think that has anything to do with the chemo choices. It is purely stage based from what I understand. I am kind of surprised that you were not given an option given the size of your tumor and the negative nodes, but not too worry - you got what is generally considered to be the more aggressive treatment.
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mommafluff: Hugs! Come join us on the hair, hair, hair thread.
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Mommafluff! You AND Moe shaving your heads...I think that is so very smart of both of you...I didn't do that..just let if fall out over a couple of days..ruined our shower drain..we just got it back to normal...I should have just shaved it off like you two did...I was too chicken...GOOD for you..one and done..and then move on..probably the smartest thing to do...
I'm OK with the aggressive treatment...it didn't kill me..in fact they told me that they were going to try to bring me down to the rest of the population..ha ha..I think I drove them nuts...and it didn't work.
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I did not have any node involvement and was Grade II, Stage II, but I got Adrimycin (red devil), Cytoxan and Taxol anyway. My Onc. insisted on it, and I was naive not to question it. I think I did the most chemo out of all of you, I did a total of 8 treatments. I hate myself today for not questioning it. The two other TN's in my support group did only 6 each.
I had read about the heart thing and did mention that Ito the Onc. However, they assured me, including the nurse, that the cardio risk comes with very high dosages, and she gave me info. on the dosages at that time, which I have forgotten now. When I saw my dosage, it was like 5% compared to the toxity at 95%. So I believed them. Believe me, I checked into it before doing it. But I am glad for those of you who did not do the red devil, it is the most horrible drug on earth, I swear. All the flesh out of facial skin went away, and I began to have a gawky look, all of the flesh still hasn't come back. It took my color away, from which I still haven't recovered fully. I did the red devil from Sept. 21 to Nov. 1st. Due to it, I even hated drinking water, which I still do till today.
I think my Onc. is giving me all he has got, because of my TN status. However, recently someone asked me whether I was still a TN, due to my receptor tests coming back positive for progesterone at 5%. I think the perecentage needs to be higher in order to be a positive. Does anyone know, is it 10% or 20% of the tumor cells have to have the hormone positive receptors.
MBJ - I will check out the hair, hair, hair posts. I am dying to read that post which talks about the aridimex, SE's and the low positivity status. I have 3 weeks time to do my research before I make my decision. Thanks for keeping an eye on that subject for me.
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MBJ - Under which forum is the hair, hair, hair thread?
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LovelyFace,
No, any of us that received the A/C & T got the 8 treatments as well. I had four of the A/C and 1 Taxol (instant bad neuropathy) and 3 taxoteres, which is what she switched me to to avoid further neuropathy. Four of each chemo is the usual A/C & T. The gals that do T&C usually do 4 rounds, but some oncs choose to do 6.
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Lovelyface - there are MANY of us here that had 4 x DD AC followed by 4 x DD T or 12 weekly taxol. Standard tx for lots of us - TN or not.
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Lovelyface: You are so welcome! The Hair, hair, hair thread is under the Chemo before, during, after header.
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Blood draw today, then 3 monthly onc visit tomorrow.
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Gillyone: Have a great Onc appointment. Mine are pretty uneventful, and that's a good thing!
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Hi All. Newly diagnosed (just last Friday) grade 3, triple negative. I am 41. How long after biopsy results do most undergo surgery? Having an MRI tomorrow, and first oncology appt. next Monday. I feel like I should be in surgery this week - but that's probably unreasonable. Any insight would be so helpful. K
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Kadorazio: Sorry you have to join us here, but you will find much support here and a great group of women who have been through this already, myself included. If you dr's a very thourough, they usually run lots of tests MRI, CT scan, another one for the nodes, and once they have all of the information, they use this to stage your treatments. Have they told you a lumpectomy or a mastectomy? Chemo and rads? Where are you being treated? I had neoadjuvent chemo TC x 6 prior to my MX and had no node involvement so no rads so my surgery didn't happen until the end of March. You can post all of your stats on your info page so we can best help you. Hugs.
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Kadorazio--I had excisional biopsy(Right side) and had bilat mastectomy 6 weeks later. Chemo started 6 weeks after that.
Good Luck to you. The women on this thread are very smart and supportive. We are here for you. Take a little bit of time to digest all this news so you can make the best decisons that are right for YOU. Every case is different. Start a notebook with questions for your Docs and have someone go with you to all of your appointments. You will need them to take notes. Be a good advocate for yourself and make sure you are satisfied with your medical care. Ask questions and get a second opinion if that feels right. Come here often. We care.
Navy
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Many thanks for your encouraging words. Forgot to mention that it has also been recommended that I have genetic testing. Surgeon is recommending mastectomy and chemo - didn't think radiation would be necessary. I will definitly stay in touch - it is so nice to know I can find help and encouragement here. I can tell most people really don't know what to say to me right now - weird! Thanks again! K
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kadorazio: Have you met with an oncologist yet? Have they mentioned or do you plan on having reconstruction? Cancer can make everyone uncomfortable--I found I got closer to some people and more distant to others. It's a long, hard journey and please feel free to ask any questions, share your concerns, anything at all. We are here for you! Are they recommending genetic testing because you have children? Hugs!
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Kadorazio: My biopsy was 9/1/10... found out I had IDC 9/3/10... had bilat mx 10/7/10. The time for surgery varies greatly. Much depends on getting all the necessary testing done, coordinating with the scheduler for surgery, coordinating with the PS if you're having immediate reconstruction and getting pre authorization from insurance. Right now, it's a lot to take in... and you WILL feel overwhelmed. The vast majority of us are a wreck after dx. The waiting is absolutely hell on earth. I was 43 when dx with only a half sister who had had bc 5 yrs prior. No family history, but was tested for brca because of my age. I was positive, which is why I chose bilateral. My biggest suggestions are: Get second and third opinions, ask lots of questions, come here often and ask for opinions/suggestions. Oh, and if you feel like the world is coming to an end and you can't do this... you're in good company. Many of us have felt the same way and it's perfectly normal. I thought my life was ending.. literally.. but I'm still here and almost done with treatments/surgeries. Since I was positive for brca, my daughters were also tested.. one positive.. one negative. Both are still at risk, and I don't really consider the one who is negative "out of the woods" just because she is negative.0
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Oh, one more thing re mx vs lumpectomy. The decision between them is completely yours. Both carry the same rate of survival. My bs recommended mx because I was very small and he felt I wouldn't be happy with the outcome of lumpectomy. He was right, because the biopsy left a small divot. Being brca positive pretty much sealed the deal, plus I was determined to have a bilat if I was positive. With mx, you probably won't need radiation, which is bad for the skin. With lumpectomy, you will keep the remainder of breast tissue and not have as much numbness. It's really a hard decision. My bs agreed to do nipple sparing, so I was fortunate to keep my nipples. My cancer side is pretty much completely numb.. but the other side has feeling to the nipple. My sensation has gone a little bit because of expansion.. the skin is really tight right now.. but it should be better after exchange. There is also a picture forum so if you want to see some of our pictures from start to finish, let us know. Several of the women on the forum help with it.
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Hi Kadorazio..whatever you have to have done (and there are alot of decisions to make)..we will be with you all the way...! TN is aggressive so push for quick treatment...I was diagnosed on a Wed., had a lump on Friday, chemo 4 weeks later...then rads..it took 8 months.
NavyMom..so..we are alot of smart women huh? Thanks! We have had to learn quickly I will give you that.
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Thanks guys. Because I have TWO lumps in one breast pretty far apart, the surgeon said lumpectomy was probably not a possibility. Fine with me. Yes, I am freaking out. Don't know how I am going to tell my mother. No immediate family history. No children and no plans for any either! I'm assuming genetic testing was recommended to help decide between unilateral or bilateral. I just feel like this is taking to long - it's scary.
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kadorazio: I had the same situation-two lumps one at 3 o'clock and one directly under my nipple. Hang in there! The waiting is the hardest part. For me there was such great relief in finally doing something but the time leading up to it was crazy. I had alot of fear of the unkown. Now that I am almost done, my breasts actually look better then they did prior to all of this. It is amazing what they can do with reconstruction. When you post a little bit more here, I will help you get to the picture site (when you are ready) so you can see what your options are.
It seems most of us triple negs don't have a family history. Know that you will be fine. The time they are taking is to give you the best possible care and chance for a long life. It sounds like they are being very thorough with genetic testing, which is what we all want! Hugs!
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Hi TN Sisters!
I've not been around for a week or so because I finally had a "good news" doctor's appointment, after many not-good ones.
Last week, I finally met my onc - at the Univ. of Penn's Rena Rowan breast center in Philadlephia - and I finally left an appointment feeling hopeful!
We were so elated, my DH and I went out for dinner to celebrate, since the very thorough appt. took 3 hours and it was dinner time by then.
Anyway, the onc. is treating me as a TN but since my ER was positive by 1 to 2% she's having it retested to be sure. It's unlikely to change but I appreciate her thoroughness. Anyone had this impact their dx/treatment?
Honestly I've become mentally used to being a TN, so I'm not sure I'm ready to have it change.
My onc told me chemo would be 4 treatments, but didn't say which because she's waiting for a full re-revaluation of everything my BS did. Does this mean TC only?
She's also taking my case before Penn's tumor board, so that makes me feel good too (I hope).
I have to go for a bone scan and chest xray - she said to get a baseline - and was supposed to do that today at 7:45 am but we had an overnight ice storm, so now I go Thursday. What's involved in the bone scan? I know there's radioactive dye - will this make me pee blue again, like after the snb?
Also, my BRCA test is in Utah, they called me this afternoon to confirm, so I'll have those results in a week or so. Anxious about it, even though I have only one great-aunt on my mom's side with bc.
Wow, after all the waiting - my ball is finally rolling.
Watching the hair conversation closely too - as you can see from my pic I was/am old punk rock girl and have had fun with my hair for ages. My natural color was light ash blonde, but have been coloring my hair so long, I can't really remember what it looks like.
In my 20s, I used to shave my head except for some long bangs in front (it was the late 80s, what can I say?!) but never thought I'd be bald again at 43. The idea also makes me anxious....which seems to be my middle name now.
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So glad to hear you are in good hands. There are a few women on here that are slightly postive and I am sure they will chime in here. I don't remember peeing a weird color but I do remember having to drink lots of water and peeing lots! Thank you for letting us know how you are doing and let us know what happens next. 4 x TC sounds reasonable for your stage.
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Hi Michelle67
I am a TN, actually figured that out myself when I saw my pathology report. My Onc. never even told me that, now that I think back. After surgery, my pathology report indicated that I was less than 1% ER+, and 2% weakly positive progesterone. I myself, asked the Pathologist that they re-test my receptor tests as I read somewhere that being progesterone positive is rare and there may be a testing error. On the addendum, it is written that "there is 2+ nuclear staining in 5% of tumor cells". I think in order to be positive one has to have at least 10% - 20% positivity, although I understand the cut off is different in each hospital. I have yet requested that they re-test a different block of my tissue, to which my medical onc. yelled at me so badly. He said to me "what are you gonna do with the results? what is the purpose of this re-test". I mean you won't believe the way he yelled. I didn't know why he is so against the testing. I called the Pathologist and asked that they send all of my tissues to UCSF and get them re-tested. It has been over a week I am waiting.
Also, I haven't been tested for the BRCA genes yet, as my insurance company denied the test. The genetic counselor said the third time, they will approve it, so any day now, I will test for that.
But your step-by-step seems to be going very well. You seem to have a good onc. unlike mine, I think mine is the worst in the world. He never talks to me. I have to figure out everything myself. I am frozen with fear when I think of changing, I feel so helpless and scared.
Losing my hair has been one of the worst things for me. I am very uncomfortable. I am done with chemo, so now, after 17 days post chemo, I see some action on my head.
Best wishes and I am so happy you had a good appointment with your Onc. You should be just fine.
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