Calling all TNs
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Lovelyface- I am 3% ER+ and my onc considers me TN. It was explained to me that anything under 8% in TN. I have also heard 5% and under. So I don't know what to think. I have not been offered any hormonal treatment.0
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jlynnbain: How old were your great grandmothers when they were diagnosed? If post-menopausal, it may not signal a genetic link (as BC is "fairly common" in PM women), but I agree with your doc... wait for your test results, then decide. In my experience with this disease (and in life, lol), any time I've been stuck on a decision, it's because I was lacking a key piece of information - so all may become clearer to you soon.
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Jody: Decision, decisions... questions and uncertainty. That about sums up the feelings while you're waiting for surgery and wondering what is the "right" thing to do. Originally, when I was dx, I was going to have a unilateral mx and that was mainly because I was so tiny that a lumpectomy wouldn't have a good cosmetic look. However, like you, I was waiting for BRCA results (being dx at 43). I thought I would be negative, since there was no family hx, but ended up positive... which changed everything. I had decided to do bilateral mx if positive and glad I did.. I have no regrets there. Before going any further though, let me point out that between lumpectomy and mx, there is no difference as far as survival. IF you are BRCA+, then that is what increases your risk for contralateral BC and OV CA.
There are pros and cons to each procedure (lump vs mx). Neither one totally wipes out the chance for recurrence because as you pointed out, you can have a recurrence along the scar or with any tissue that was missed during mx. So really it's a very personal decision with the only thing tipping the balance between the two being your BRCA status. Lumpectomy has shorter recovery time, you get to keep your natural breasts/nipples, cosmetically looks better because no large scars and natural tissue still, and the only numbness you'll have will probably be where the small scar is. However, with lump, if clear margins are not obtained during the first procedure, you may have to have additional surgery. You will also need rads if you have positive nodes. Your skin does suffer from rads... it changes it. People with rads have less options with immediate reconstruction, since the skin has changed, and that really affected my personal decision as well as being BRCA+. You get a better overall result when you choose mx w/immed recon.
With mastectomy... it's a whole different ballgame. It's a bigger surgery and as with any surgery, you have to watch for signs of infection as well as longer healing time. You lose all the tissue the surgeon can find. The incision is much larger. Sometimes the nipple can be spared, sometimes not. (I had nipple sparing) You lose sensation to the majority of your chest after surgery, at least for a while, and some of the numbness lasts forever. I was fortunate and have a good amount of sensation in my non-cancer side nipple, while my cancer side is completely numb, but many women lose all sensation. Don't let that really scare you, because now after 4 months I can say I've either gotten used to the numbness or some of the feeling around the breast has come back partially. Nerves grow VERY slowly when coming back and it can take months or even a year to get back whatever sensation you'll have. If you have bilateral mx, with immed recon, then both breasts will match or have a much better chance of matching.. whereas unilateral is a bit more tricky to match up, and can be very difficult to achieve the look you want. Mx is a more painful procedure to begin with... more healing time. Everyone heals differently and everyone reacts to pain differently. You'll have drain tubes with mx, which is probably the worst of the whole ordeal in the beginning and feels so much better once out! TE's aren't comfortable either... they make your chest feel very tight, like you have a steel bra on. Some people refer to them as hub caps! They do not give! They are not natural looking (at least on most of us) and you have to remember they are only expanding your skin for the end result of implants. The end result WILL look more natural. (If you haven't already done so, go to the picture forum that some of the women here help with and see before/during/after pics) Your skin after mx will be thinner. I'm thin anyway and mine is pretty thin... my exchange is Monday and my PS has told me that I am at risk for some ripples or divots just because of my skin being thin, BUT they can do fat grafting if it's a problem once things settle. If you choose mx, you will also need to do gentle exercises after surgery to get all range of motion back which does hurt some to begin with but most surgeries require gentle stretching to get back range of motion. And you don't do the stretching right after the surgery either.. you have to wait for them to tell you it's ok.. usually after the drain tubes are out. Sleeping is uncomfortable for a while (get a recliner and pillows). Driving takes a little while before you can do it, again because of range of motion.
Again, I was BRCA2+ and I do not regret the bilateral mx at all. I also suggest getting on some of the mx threads here and reading up. I started one in October last year for those having mx's that month and I bet there are others since that time. Best of luck in your decisions... and just know that the worrying before the actual surgery is WAY worse than the event itself!
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Well I have been having these dreams that my petscan is clear but the last two nights I've had this dream that my onc is explaining to me that I have mets and that I am not dreaming and the dreams that I was clear were just dreams. I've woken up drenched in sweat. When I got up this morning I could hardly breathe. Thank goodness for Xanax. I don't get the results until next Tuesday. I just have to be all right. My son lost his dad about nine years ago and he was crying so hard last night because he is so scared he will loose me too. Man, I've got to get a grip. I don't mean to be so selfish and I've got to catch up on the posts but I just felt if I don't share my fear with someone I am going to go even crazier than I alreay am. I know I am trying to stay positive and please don't anyone else say that to me today. When I try and express my fears all I hear is "Think Positive" as hard as I am trying to I am still bloody scared.
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Angelisa-that was a great synopsis of what to expect on both sides of the fence. Be sure to copy and save somewhere. I was thinking about responding, but just can't pull even a paragraph together yet. Better yet-start a new thread for LvsM, and that can be the permanent opener...
Laurajane-we are here for you. ((((Laurajane))))
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laurajane -
You are not being at all selfish. That is what we are here for - express your fears, vent frustrations, whatever! You can't be positive all the time, even under the best of circumstances. I too had a dream last night about being told I had mets. I am not waiting on scan results, but have my first follow up with my onco next week . . . I guess it is anxiety about that. I woke up feeling terribly scared and depressed this morning because of it. I am so tired of thinking about cancer. I too try to tell myself to quit going through the "what ifs" and worrying about horrible things that have not and may not happen. But, as you said, no matter how much you tell yourself that, it is just scary to deal with this.
I hope your scans turn out clear. You deserve it and it would do us all some good around here to hear good news!
I also hope your son is okay. What a scary situation for such a young child. I know this will sound weird, but I am so thankful that I do not have children because it would be heartbreaking to have to put them through all this.
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laurajane: TNBC is bloody scary and we all have our moments of meltdown where the fear just overwhelms us! My initial thought is that your subconscious is working overtime on worrying about results, thus giving you the dreams. Have you ever had dreams that were premonitions? You're no doubt concerned about results, and BC leaves all of us with a lingering fear of tests, aches and pains. Waiting on results is extremely hard for us and no one can understand the things that go through our minds except someone who's been through it. I really believe your mind is just working over time and it's nearly impossible to control your subconscious. Let us know how it goes Tuesday! Quite honestly, I would be on pins and needles too even if I put a good, strong appearance on for the rest of the world!0
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thanks so much for all the information. cc4npg...you could have a phd in breast cancer. lol ! that info helps me alot
i am just going to keep going with the flow and try to take one thing at a time. i just feel like i need to get something done like now. i feel like waiting for either rads or mast. is going to make me have a reocurrence quicker. although like we all know, TN usually if it comes back is distant. i have already had the visit with the plastic surgeon and the breast surgeon and another thing that i don't like about having this surgery is the thought of them taking all the lymph nodes and then worrying til pathology comes out, lymphendema, not being able to ever sleep on that arm again. ugh. heck, i thought that was what chemo was suppose to be for. killing anything that may be left after lumpectomy and now you have to worry that it could still be in the lymph nodes. the gene test will be how i decide. luah...my great grandma on my dads side was 53 when she died from bc and my great grandma on my moms side was around 67 years old. i also have great aunts on my dads side with a hystery of bc. off course they were all post menopause. i was diagnosed at 38. my doctor did seem to think mine was not basil. i guess that is a plus, right ? thanks again to all of you for the info. i knew if i came back to these boards, i would feel much better. 0 -
PET SCAN CLEAN!!!!!!!!!!!!!!!!!!!!!
I called my onc just now and told her I couldn't wait until Tuesday and she said she was happy to share the news that my petscan was clean. Wow!!!!! They finally found a chemo that actually worked on the cancer. Hallelujah! I am so happy to know that I have more than a few months. I can't explain my fear after doing AC and Taxol and both not working to slow this monster down I believe the Carbo/Gemzar has worked. I have been feeling so rough and was afraid it was the cancer and now I know it is SE's from the chemo. I am going to LIVE!!!! I am going to beat this. There is hope! Love you guys, thanks for letting me share.
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Laurajane- What wonderful news!!!! I am so happy for you!! Sounds like you need to go out and celebrate!!
Tiffany
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Great news laurajane!! SO happy for you! See, this is what cancer does for us.. it makes us so afraid of everything. Our minds keep trying to link an ache or a pain to cancer and personally I believe our minds are extremely powerful. Sometimes we can make ourselves feel sick when nothing is wrong, or at least that's been my personal experience with my family. And I'll say it again, before our dx we would have never jumped to an ache or pain being cancer related but now we definitely tend to. Anyway, it's wonderful they found the right combo for you! There's always hope!
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Laurajane - I am so happy to hear your news!! It is wonderful!! I can relate to the raw fear in your earlier post. I am there right now.
The headache/pressure in my head has now been here for 7 days. I've tried everything hoping it is sinuses, including a neti pot. My onc is having me get a brain MRI next week. I can't think of anything else it could be, and I am here in NYC doing what I can to forget. I'm sleeping like crap, having horrid dreams, and tear up at everything. Until I get the results, this is how I am. Thinking the worst. I hope in a weeks time I will be able to call this my first scare, and let everyone say "I told you so."
Babs - congrats on getting through your surgery with flying colors! It must be such a relief to know it's out!0 -
Oh LJ- your news made my day and I shed some happy tears! Prior to that post I was going to say that your "dream" sounded more like a nightmare. Now, you can sleep well tonight because you are dancing with NED!
We will have a lot to celebrate in DC during Cherry Blossom if you still are planning to make it!
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Suze- praying for you big time! Have fun in New York is easy to say but when I was there my fear prevented me from enjoying it to the fullest. I hope you can overcome that and have a blast. I know, easier said than done.
Heidi - you are right, nightmare is more accurate. Yes! Looking forward to celebrating in D.C.
Funny how a few weeks is so much worse than a few months which is so much worse than a year or two. I need to stick to each minute is precious. I have wasted minutes worring and I should be rejoicing to have these minutes.
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Suze35: What is your BP and pulse like? You're not diabetic, are you? So many things can cause headaches. When is your MRI scheduled? Yes, we will all be glad to hear everything with you is fine! I don't think I'm alone in saying that when one of us is having a scare, it affects the rest of us.0
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Happy tears here too, laurajane. That is so great!! I am so relieved and happy for you! Do something fun for yourself today to celebrate - you have earned it.
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Hello I just read about this thread on another thread. I recently joined this board. I am 42 years old, and I was diagnosed December 15th with DCIS, then had MRI with a 4 cm. area of enhancement. Thank goodness I didn't know any better because I just assumed it was from the hematoma from the biopsy. Well, it wasn't. From my lumpectomy on January 20th, it was mostly DCIS with a 3 mm TN tumor hidden away in there (they did not see this on mammogram and MRI appeared to be completely ductal) I am right now in the middle of decision making, getting three opinions on everything because I am getting conflicting info on everything from whather I should get another lumpectomy to get clear margins or just get a mastectomy (I have large breasts and am BRCA negative) to whether or not I should go for chemo, probably TC. My first onco said chemo. She then sent me for a second opinion at Roswell Park Cancer Institute and they said no chemo. I have been having cramping groin pain for months now (since September) and have had every test in the book. Just recently finished testing with an MRI and boy do they find everything! I have many ovarian cysts on both ovaries, uterine fibroids, and a divot on my hip joint. So, now I am freaking out again. I am really starting to get tired of this rollercoaster ride! So glad for all these boards. You guys are keeping me sane! Also, I had a Mirena IUD inserted in August. Nothing but problems since! I had it removed as soon as my biopsy came back.
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congrats laurajane. i have been following you for awile now and i am just thrilled to hear your news.
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Did anyone have TC for Tx and develop a dry cough? I got one after tx 2 and still have it 8 weeks PFC. Of course, it makes me nervous and every scenario is running through my mind. Anyone have any thoughts on this? I told my onc about it several times and he didn't seem concerned-wel, I am!!
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Laurajane- I AM SO HAPPY FOR YOU!!!!
Suze35- My thoughts are with you. Sending you hugs and hoping you can enjoy the rest of your trip. But I understand you are scared. (((hugs)))
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Oh LauraJane!!!! Hallaluah! I'm so happy for you. I'm so very glad.0
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Wonderful news, Laurajane and I am so happy and relieved for you. Decades and decades of more clean tests!
Linda
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"I don't think I'm alone in saying that when one of us is having a scare, it affects the rest of us."
Ain't that the truth...
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Great news, Laurajane!!!!. Doing the Happy NED Dance for you!!!
Navy
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I will be having my 2nd PET scan tomorrow. My 1st one was in October prior to chemo. Finished chemo 2/8 & my Onc. wants another one. My surgery is scheduled for 3/7. Having left MX with TE & right reduction, or that is the plan for now. I will be off work for 4 weeks minimum, acording to the PS. Then when all is healed on to Rads, and then reconstruction. Along with all of this to think about I just want to have my hair back! Is that about the most stupid thing that a person could want when she is about to have major surgery? Oh, on top of that my boss STILL has not hired a temporary Nuc Tech., and he has known my DX since Oct. I have got to the point that it is not my problem, and not worrying about what happens at work while I am gone.
Ok, enough for my ranting.
Beccad
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Laurajane- WONDERFUL NEWS !!!!!!!!!!!!!!!!!!!!!
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Laurajane, Girl, you made my Day!!!!!!!! Thank you so much for the good news, much Hugs to you and your son! Celebrate, you will be okay!!!!!!
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TifJ - thanks for telling me about the percentages they use in determining TN. My first receptor tests showed 2% positive for PR, the second receptior tests showed 5%. There was so much misunderstandings in dealing with the lab, as I had to explain to them over and over that I wanted a different tissue tested, not the same tissue which was tested by the first hospital. Finally, I think they tested a separate tissue and determined the 5%, although I think they could have done a better job or that my Onc. should have made a clearer request. Anyway, I am really not sure that being TN is better or worse than being triple positive. You know TN is not all that bad, once you get past the first 3 years of nightmare, the fear of recurrence. I heard that HER+ is highly aggressive. Am I really stupid to think this way?
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SusanHG: Lumpectomy and Mastectomy have the same rates of survival.. neither is different so it's really a personal choice, and it's a hard choice. As for the chemo or no chemo... I bet you are getting some conflicts there. I also had a 3 mm tumor which was completely removed at stereotactic biopsy, and the only thing that remained at mx was DCIS under 1 cm. I got two opinions on chemo and both said it would benefit me being triple negative and being that I was 43 at the time. The "line" used to be drawn at 5 mm. Anything under 5 mm was considered a gray area and no chemo was offered. But I think oncologists are realizing that triple negative people need chemo, no matter what the size. I just finished 4 rounds of TC and although it wasn't exactly a walk in the park, it was doable and I'm glad I did it because I know I've done everything I could. My decision was made when someone asked me, "If you have a recurrence later on, will knowing you didn't get the chemo be something you look back on and wish you had done?" Our first dx is the best time we ever have to completely knock this beast out of us. I am pleased with my decision to do the chemo. I'd make the same decision again.
TifJ: I did not develop a cough, but I have read a few others that did have that. I did, however, have a LOT more gunk in my nose/throat. I think it's starting to go away now at not quite 4 weeks pfc.
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jlynnblain: Making this decision can be the hardest one of your life! After reading all of the pain and problems on these boards with women who have had radiation and then needed reconstructive surgery, the expanders seem like a breeze to me. Yes, it was an uncomfortable 5 months, but my dr's did a beautiful job and you can hardly tell I had an MX on one side. This has been my experience. For me, radiation sounded much worse then chemo, but again, that was my experience. I think when it comes to these types of choices it's very individual--there are many women here who have had a lumpectomy and radiation and are very happy with their choice. I always say, listen to what your gut is saying. Mastectomy sounds just awful in comparison to a lumpectomy, but you can end up sometimes with more damage if you have more then one surgery, excpecially if you have small breasts. Best of luck with whatever you decide to do--we will all be here for you no matter what you decide to do. Maybe go and check out some other threads that deal specifically with reconstruction. This is what I did and it was very helpful (though I didn't have alot of choices) and it helped me with my decision. I also went to three PS's to get their opinions. There aren't any fast decisions with cancer, there are only the right decisions for your individual case. Everyone else has also given you excellent advice and an accurate picture of what to expect.
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