Calling all TNs
Comments
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Love it Cocker!
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Morning ladies. Just want to say how thankful I am that I had and have these boards to come to for guidance and support. It was 1 year ago today that I got the dreaded phone call to come to see the BS the next day. She had my biopsy results. I wasn't officially told til the next day but I knew. And looking back a year ago I never thought I would get thru what I did in this passed year. And here I am stronger for it. Thank you for always being there and answering my questions and comforting my fears. This journey will never be over as you all know all too well but I can honestly say that today I am in such a better place the I imagined I could be 1 year ago and it is largely because of YOU! Xoxo
Melissa0 -
Oh Melissa, that is so nice! And I also want to say that as well. I don't know if I posted a message on my 1-year healthy victory on January 4th, but it's the way I feel as well. So many of you cheering me on. Thank you as well everyone.
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Mellissa and Inspired...
So glad to hear you both are doing so well. It is not a fun journey to be on but I too am so thankful for everyone here. I don't feel so alone. No one gets the fears with this BC especially TN. They all just say, Now you are all done, your cancer free. And you have perky new boobs. Well, I would rather have my sagging old ones and not have these fears that I try and suppress to the back of my head. My life has changed because of this and some of it being a good thing. I do feel more stronger and positive each day and that is just how I need to continue on. I certainly couldn't be going forward like I am without all of you! You all have been such a blessing in my life and hopefully I will come back to the boards when I am one, two etc years out to give positive vibes to those just starting this journey.
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Melissa and Inspired - so glad you are celebrating your one year anniversaries.
Hopex3 -- Keep looking forward and don't let fear, rob you of your joy. It will lessen with time.
Annie - good one!
Today, the sun came out! We have had a lot of rain. Hope it's sunny, where you are.0 -
Thank you OBXK. I put my husband's thick long robe on (with my bathing suit underneath) and sat out on the patio. I stay warm this way, but can dangle my legs out for a little sun! Trying to keep my D3 levels up!
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Melissa and Inspired...remember that you also made it through this yr because of YOU...you are strong women and you did it!! Congrats to you both...
Got the call from NOLA today for my financial responsibility for my retry surgery on Tuesday and it is a whopping $219.00 I am so excited!! and Scared and nervous and........this time the flap recon is going to work because it HAS to. My rightie is lonely without leftie
Maggie
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Hi Mags,
Thank you! I do feel like I've worked hard at it. LOL When I'm not in the kitchen steaming veggies, I'm working out. When I'm not working out, or steaming veggies, I'm on myfitnesspal.com figuring out my fat grams and remaining allowances on everything for the day.
)Yes, this time it will work, no doubt! Last time maybe just your body was still healing from the mastectomy.
That is awesome about your out-of-pocket being that! Our insurance starts over April 1, and so I'm trying to also get in last minute updates, as I've reached the $3400 out-of-pocket max for the plan year. I can totally relate when someone talks about the financial responsibility!!
Have a nice evening ladies!
- track nutrition
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Hi ladies, wow skip a couple weeks and miss a lot! I hope everyone is hanging in there - sending hugs to those who need it!
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Ugh! Thought I had lucked out, but went to the doctor and she confirmed that I have Lymphedema. On Monday I have to go learn how to take care of myself and learn to live with this new side effect. I guess I will be hanging out in the Lymphedema boards now as well as here. I will celebrate 3 years NED in May.
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Hi Ellen,
Hang in there! What were your lymphedema symptoms? Did they appear recently? Wishing you all the best and congrats on the upcoming May celebration!
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Hi TN friends - i've been gone for a couple of weeks. The forum has been very active during that time. Some things I want to add are probably quite out-of-date, but I'll do it anyway.
Ranae64 - re birth control pills. I did those for a short time. But what I did for a long time was Hormone replacement therapy. The medical community thought those were great...would decrease our risk of heart attack. would decrease our risk of osteoporosis (which I don't know how to spell), and etc. Then in about 2002 they discovered that HRT increased our chance of BC!!!! So I stopped. And I don't lay a guilt trip on myself about doing HRT, for the advice was there. But when my primary care physician mentioned that drinking wine (any amount...and I limit mine to one glass an evening) can increase the chances of BC, I certainly reminded him of the HRT link...and told him NO MORE GUILT TRIPS! Hope he remembers, so I don't have to shout at him.
luvBrgGma - My MO also wanted to leave the chemo port in for awhile. I asked him if he was expecting to have to do chemo again real soon. (He prefers to take a positive approach.) So he said it could be removed. I'm glad to be rid of it...the bump was just a reminder of what I'd been through. If I do get more BC, it'll just have to go in again.
Guygirl - I noticed the lymphedema symptoms right after I finished chemo. The BS sent me to a lymphedema trained therapist (check the lymphdema board to find out how to make sure your OT is trained) and the massage, exercises, bandaging, and compression garments really helped. The affected arm is only a bit larger than the other. The hand is being more stubborn. I may have to revisit the therapist sometime about that.
Russell33 - I also had "chemo eyes" after the 3rd treatment. I often had to reassure folks that they really hadn't made me cry by something they'd said. Now, 5 months later, they are much better. It just takes so long for the SE's to abate.
I'm feeling much stronger and regaining my energy level now that I've finished surgery, chemo, and radiation.
Nat
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Hello - my turn to chime in and thank Titan for starting this thread, and thank all of you wonderful gals for your support, prayers, and much needed humor!
I had my 1-year post-chemo (actually today is 13mos) check with my MO yesterday. Everything's looking good!!! He only does a chest xray and general labs - doesn't order other scans or tests unless symptoms warrant them. That's okay with me. I'm feeling good!
The onc docs use dx date as the starting point for recurrence/survival stats. I personally like to use my surgery date. Anyhow, I am 1.5 years out, and if 3 years is the peak for TNBC recurrence...I'm half-way through!!! My doc told me that he's seeing most recurrences within 3 years. I asked him if he was seeing a lot of TNs - he was, and had just started another TN-gal on chemo the day before. Where is this nasty beast coming from???
With all that we gals at my treatment center have been through - surgery, chemo, rads - we talk about our hair! All of us. Even the nurses. My male onc just smiled and shook his head. Too funny, but I think it is part of the process of becoming "normal" again. It sure is nice having hair again, but we all agreed that bald was easier! BC is so 24/7. Comparing our new 'dos was alot more fun, for sure.
So, now it's checks with MO and RO every 4 mos, an annual mammogram for lonely non-BC girl, and of course, VIGILANCE on my part. I am having my "dog ear" - that side poof - removed by my BS with scar revision in two weeks. He left the extra tissue there in case I wanted recon. I don't, but that dang thing has got to go...it keeps popping out of my bra!
Has anyone gotten back the feeling in their underarm after axillary dissection? Mine's still numb, but the back of my arm is coming back slowly. It's still weird to only have to shave half of that armpit! And it's nice to be able to laugh about these trivial problems, now.
I hope all those currently going through treatment will have minimal SEs, that all the newbies will find comfort and confidence from the wonderful ladies of BCO, and that we "oldies" will jump back into life with joy and fearlessness.
Take Care ~ Shar
Titan ~ from one 'dinosauer' (36+ for us!) to another, belated anniversary wishes!
Navy Mom ~ Hang in there, Mom. My Mom went through the same worries when I enlisted in the Navy, many moons ago (Vietnam Era Vet). Women didn't serve on ships then, but I was stationed a long way away from home and family. My future hubby was on a ship, and he told me that they kept him so busy that he didn't have much time to ponder homesickness...work-eat-sleep. Your son is probably finding the same, but know in your heart that he is thinking about you. Gotta love those sailor-boys!
Hope60, old PM-buddy, how are you?
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Spica16- you made me laugh when i read what you said about the hair conversations. please explain exactly what you mean by dog ear, side poof? I have heard dog ear term used in past. Thanks.
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spica...I have not gotten my feeling back in either armpit. My left side is worst as 18 were removed. The backside of the arm is still numb too and just seems to hurt...I do have LE unfortunately in that arm The dog ears are awful...hate them so much...getting surgery on Tuesday to replace a failed flap and this time it is coming from my butt! Then I can get the doggies removed for the next round in a few months (dog ears are from the mastectomy surgery where the surgeon pulls the skin back together....they are flappy things under the arms leftover from the surgery)
Maggie
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Just half a day to go then the weekend yay
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Hi ladies,
One more question. You are probably going to think this is silly or dumb but when are you in remission. I admit that I have been afraid to ask my Dr's because of the answer. Is after surgery, after radiation, or when. Thanks again and all a speedy recovery.
I'm totally new to this and I truly wish I would have known about this before. I think this is great and all you ladies are wonderful.
Well I'm 37 turn 38 in April. I found my own lump on my birthday while taking a bubble bath in 2011 was a stage 2. Haven't had a bubble bath since.. I had a lumpectomy and bilateral breast reduction and had grown to stage 3. Then I was told I was triple negative and wished I would have chopped them all off. Two surgeries later due to incisions, I started dense chemo. That took longer than expected due to side effects. Then radiation which had its issues. I see my onco every three months and every 6 months my breast surgeon. Have mamos, and all other tests.
Finally had my port removed this past Wednesday. I thought I was going to have it in me forever. Thought really good after that. Saw my onco and surprise now other things have been going on.
Let me backtrack, as a side affect to the chemo not only did I get a slight sugar problem but also started menopause. They have determined that it's best for me to get a hysterectomy because I can't take how bad I'm feeling anymore. They want to leave my ovaries in due to my age. Not sure if having my ovaries left in is the right thing.
The reason why I bring this up is because my onco wants something done, because I'm anemic. But now he just told me that I also have something called Anemia of Chronic Disease. He told me I have to see a gastroenterologist. I'm worried because this is the inflammation of the liver and can be due to the new growth of cancer cells not necessarily in the liver. But somewhere. I wanted any feedback that anyone can give me. I truly would appreciate it. Thank you so much I think this is such a helpful and great way to talk to someone that is also going through what you are facing. Thank you so much again. Have a wonderful night.
Xoxo
Yani0 -
Spica, thanks for your sweet support and understanding. Glad to see you post.
Lisa, a dog ear is a little, or for some gals, a big flap of skin at the end of an incision line.
Mags, best of luck to you as you go through this reconstruction. Sending postive thoughts your way.
ypecora, Heartfelt welcome to you. You have found a wonderful place for support and understanding. I am so sorry that you are still having such a bad time. A thought came to me when you commented that the Dr. wants you to have a hysterectomy but leave your ovaries. Are you BRCA 1 & 2 negative? And in regards to the word remission.....I don't use it. But I do use the term "no evidence of disease" Better known as NED. And that means just that....No evidence of cancer upon completing treatment/sugery/rads. Hope this helps a bit. There will be other gals coming along soon to offer more info for you.
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Teresa008 -- I think the TN diagnosis is hard on all of us. It was a total shock to me because they were talking surgery, then radiation, and followup with a pill. I was so relieved I was not going to be looking at chemo. Then the surgeon told me about the TN. He wouldn't even look at me. He kept his back to me and said he was sorry that is was worse than we had thought. He did finally end with telling me we could still beat it, but it was going to mean chemo. I think that was the first time I cried -- not right then, but when I got in the car. I kind of got my news in stages. I was told right after surgery that the SN was negative. Then a week later they said more indepth study revealed it was positive. Then it was about another week before I got the TN news. I really think that it is important for you to be comfortable with your oncologist and treatment plan. Talk to your gyn, maybe he can recommend someone for a second opinion and get you in quickly.
Had treatment # 6 of 12 Taxol today. I feel so much better than after AC treaments. I didn't feel like getting on the computer for days after an AC treatment.
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Navymom
Thank you so much. To answer your question yes I'm Brac negative. And I totally like NED instead of that other word. Thank you.
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Cocker - your post was perfect timing. I sent that to my friend who is also my boss and scared shitless... has her surgery March 5 (she's also in denial).... she fell about laughing at it - which was what I wanted.
Hugs to all xx
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Guy girl...Congratulations on almost three years! I'm naive on lymphedema. I thought if you are one to get lymphedema, that it happens right after surgery. Or can it happen at anytime?
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Okay, Cocker - were you commenting on our dog-ear conversation...or did you just have perfect timing???!!! You're a gem!
~ Shar (If my dog-ear was that cute, I'd name it and keep it!!!)
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Well, DUH! I didn't even connect the dog ear conversation with cockers picture of the cute pup. Too funny. Thanks for opening my eyes, Spica. I am sitting here laughing at myself. I think I'll just blame the chemo brain.
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Is the floppy thing on the arm, where it hangs and is loose underneath? Is that what you are all talking about?
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Ypecora7... Welcome. So sorry you have to be here but these boards are a wonderful place for support and knowledge. I see you are from west New York nj. I grew up in north Bergen. My parents still live there.
And on the remission question. Do you believe my MO told me last week at my first 3 month followup after chemo that in her book I am cured! I cried and asked her to repeat herself. She said I was stage 1 and had BMX with chemo. Of course there is always a chance but she uses cured.... Where are your drs? My BS, PS and MO are all in Hackensack.
Melissa0 -
Oh Dolce, after all the post-surgery/physical therapy arm exercises, climbing the walls with our fingers, doing hand-pumps to keep the lymph flowing...none of us have flappy arms anymore - we're buff! Hehe.
The "dog-ears", also inelegantly known as "side boobs", are flaps or pouches of skin at the end of mastectomy incisions, usually under the arm (where your bra band is) The surgeon leaves extra skin available in case you want reconstruction later. Hopefully they are not caused by the surgeon doing a sloppy job. Some gals even have them at the beginning of the incision, in the middle of their chest. I think this tends to be a problem more for us well-endowed gals. (I'm a 42D - that's a lot of extra skin to deal with!)
My surgeon does a wonderful incision that is very neat. Unfortunately, he left the extra because "you're still young enough that you might want recon" (I'm not and I don't). He gathered the extra skin towards the mid-line, and trimmed it away, finishing with a >. So my total incision looks like >---- , with the dog-ear being a soft round bump at the end. He will make another < to get rid of the extra skin, and my final incision will be >---< , nice and smooth. It's a short, easy day-surgery, and superficial, so NO DRAINS involved!
Last year I put up a photo of my incision, with the rad tech's drawings on my chest, for radiation boosts. It cost too many people their computer keyboards when they spit out their morning coffee while laughing. I don't think my insurance would cover anymore damage!!!
Think Spring! ~ Shar
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Melissa119
Hi. My doctors are all in Englewood Hospital. They have been great and I'm very comfortable with them.
Let me ask you something. I'm planning to move within the next 2 to 3 years and I guess my fear is the switching of the Dr's. That kind of freaks me out a little. I know it's dumb because you can always find new Dr's. I guess for me is that I truly am comfortable with them, the hospital in general has been great, including the infusion center etc. I guess I'm afraid that if I move to a different state it's just a whole new ball game. You said you used to live in north Bergen so don't know if your still in NJ or not but what do you think.Thanks...0 -
I just checked and my bat wings are almost gone - I think it's the pushups knocking them out.
I too had this little tiny pucker at the very end of the incision line. It's worked its way flat now, and I can't see it anymore. He said it would go away in time, and I guess it finally did! I do know to make scars heal quicker keep out of direct sunlight, and by the way, the sun can still go through cheap bathing suits, which mine is. So I put something either outside the bikini top or inside it to create a barrier so the sun can't get to the scar line.
I go through this breast surgery again in 2 weeks!
Have a great Friday everyone - much love!
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Hi all,
I saw my oncologist today and she has told me about a study that she wants me to think about. It's a two-drug versus three-drug study. The two drugs would be Taxotene (sp?) and Cytoxan and the three drugs would be Adriamycin, Taxol and Cytoxan. I won't know which option I will end up with until I am accepted into the study. Any opinions on one or the other being better? If I don't want to do the study she wants to do the three drug option. I need to have an answer by Monday so any opinions would be appreciated.
Thanks so much.
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