Calling all TNs
Comments
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Susan,
I wish you the best vacation ever. Sounds like a dream vacation. I have never been on a cruise, but have heard they are great.
My surgeon just called to tell me that my MRI from yesterday shows that I have an enhancement in my right side. The BC was on the left side before, this time they see it on the right, behind the nipple. She said she will write an order for a MRI guided biopsy, I think this is what she said.
I thought about it for a while, then faxed her a letter asking why can't she just remove the enhanced area and the area surrounding it surgically, as that almost seems to be the same area where they had found the epithelial cells in the margins. I had had a right biopsy done in 2010, the same time as when the cancer was taken out of the left side. At that time, the right side did not have cancer. But they had taken a big chunk out of there. The pathology indicated that there was still some flat epithelial cells in the margins after the biopsy. Surgeon said she could remove the whole area, but later we decided to just leave it. I would be happier if we could just go in and remove another chunk in these areas, and see what pathology says.
Just thinking ahead, if anyone knows, please do tell me - if the enhanced area is actually a new primary, then what? Does the new treatment depend on the findings, whether it is stage 1 or 2 or 3? I am freaking out already.
I know that MRI's show a lot of false positives. I haven't even read my MRI from yesterday, yet. I plan to pick it up after work. The surgeon called me so fast after she got the results. I am not looking forward to a biopsy, I hate those things and I personally feel that they are not safe. I would rather have a surgery and have her remove that entire area, and show me clean margins from those cells, which may get cancerous at some point during my lifetime. Or it may never get cancerous.
Anyone has any suggestions?
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Suze..maybe the finger thing is just from the chemo?
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LJ: God bless and hope those blood counts go up real fast and you can go back home, rest and let that Halaven continue its magic.
Susan: Have a wonderful time, God knows you certainly deserve it. We will all be here when you get back to encircle you with stength, prayers and all good thoughts. Together we shall all get through the MRI - and I second Titan's post - could it not just be the chemo side effects. I'm thinking in that direction and will continue to! Be well, dear sister, and enjoy that trip. Safe travel down there and back.
Lovelyface - Am sending all good thoughts to you. Be strong, we have your back!
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Good evening beautiful ladies! I'm still here in my luxurious suite. Private room, pretty people in pink catering to my every need, delicious gourmet food, freshly ground latte in the morning, fresh squeezed orange juice (I'll change that to "Bloody Mary's) served by gorgeous dark tanned (muscular) men in their tiny speedos, palm trees swaying in the wind, listening to the waves and feeling the soft spray of the ocean misting my dark tanned toned body....I love dreaming, sure sounded nice don't you think? but I'm actually still in the hospital. Oh well, maybe tomorrow counts will be up and I can go home. Dreaded edema back in my left arm other than that I feel pretty darn good. Happy anyway. So glad to be here today.
Lovelyface, Mity, Luah and Lynn- thank you and everyone I'm sure to have missed, thank you for your positive sweet words of encouragement.
Suze-what can I say? I hope you can put the test out of your mind. Pop the Xanax and have a great time. I hope wine is tasting good again or one of those fun island type drinks and of course served
by one of those gorgeous male waiters. Man oh man I truly hope the weather is wonderful and you and your family have a fabulous time. You deserve this so much, Suze.
SusanHG- I'm going to ask my onc about that vaccine, some of the other gals had mentioned something about this a while back. Thanks for sharing the info.
Lovelyface- How terrifying ! I think my immediate impulse would be as yours is "get it out of me!" but again, hopefully it's nothing. I too have heard about so many false positives and I pray that is what
it is for you too.
I get my Ct scan on Monday and see my onc again on Tuesday. By the way my onc came by to see me today and told me she will be interviewed on The Today Show this Friday morning at I think she said 9:00 or 9:30am talking about BC. She told me she wanted me to watch it and I wonder if she will be discussing TNBC. We will see! Hope you all have sweet dreams. Good night and sleep tight!0 -
Lovelyface - I would tend to agree with you, and in retrospect, I wish I would have just had the whole thing taken out and the pathology done when they got it out. I feel the biopsy did nothing but totally delay the whole process and treatment while the cancer continued to grow. If you know you want it out, just tell them, since you already know what was there. Good luck!
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LauraJane-glad you are feeling good-hope you get out soon so you can really go get that bloody mary served by a tan muscular guy in a speedo!
Susan-Have a wonderful trip! I hope cancer is able to stay way out of your mind and you can have a relaxing and fun trip!
Lovelyface-I think I would want it out also, hoping it is benign.
I went to see my surgeon again and told him I want this port incision healed so I can get going with radiation. He decided to redo the incision right then and there! He re cut, scraped out the old scab and as much infection as he could and sewed me back up. It is covered right now so I can't see if it looks better, all I know is when the local wore off it hurt like h*ll and I had to take a couple percoset. I then felt nauseous and sleepy all day. Had to reschedule my rads set up again. I go to see my infectious disease doc tomorrow. My surgeon took tissue and samples to send to the lab, I asked him if he was testing for cancer and he said no, don't even think that. So I guess he was just testing for infection again, but he took a sample near my mastectomy scar and it kinda freaked me out that maybe he saw something suspicious. He would tell me he was testing for cancer if he was wouldn't he? Oh well, I will try not to think about it. Just realized it has been 2 months since I have had any kind of scan, my mo had been doing them about every 6 weeks. Darn, I am worried if doing scans and now worried that I haven't had one for awhile, I can't win! I must say that I am feeling so much better and have been much more active (well, except for today).
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Suze - have a wonderful trip.
Laurajane - glad to hear from you.
Lovelyface - sorry to hear you are going through a scare. Sending postive thoughts your way.
Sorry ladies, I would write more but I'm just way too tired. I did want to make sure I posted before Suze headed out to sea.
I'm off to sleep now.
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Lovelyface,
I would want it out also - I'm sorry you're going through this. Please keep us posted.
Bak, I hope what the BS did today does the trick. I hate all the worrying associated with this awful disese - scans make me crazy, too. I was thinking today "my last ct scan was in October..."
Susan, I actually popped back on here tonight because I had the same thought about the chemo possibly causing your problems. I was wiped out physically from TAC but halaven has had a number of relatively minor, but still significant side effects. To date: I have had a buzzing sensation in my left foot; sharp but fleeting pins and needle pain in both hands and arms, cycle 3 brought increased numbness in my left hand (original numbness began unilaterally with TAC in index finger), cotton like feeling in my feet but particularly the left that lasted for a couple days after cycle 3, and it has made me "stupid" - I can't remember how to spell words, when writing I put the wrong word in place of a word, and I cannot focus on more than one thing at a time. My DH tells me I repeat myself. All of this stuff except for the chemo brain comes and goes for the most part but based on my experience, it seems likely to me that your symptoms could be from the chemo. I wanted to let you know this, particularly because I know that most people have problems with neuropathy bilaterally but that hasn't been the case for me. If you aren't getting the "feedback" from your finger to your brain, then it would make sense for you to think you're on the right key but you're not. Hope this makes sense. Anyway - passing this along and hope your road trip goes well. Actually some of my best memories as a child were long road trips. The family interaction in the car was very special to me.
Laurajane, I was drifting right along in that dream! I am going to make a note of the Today show and try to watch. By the way, there's a thread on the tnbcfoundation.org site with links to many of the recent vaccine developments - the thread is called promising vaccines under TNBC talk.
Goodnight, everyone!
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Thanks everyone for sending me positive thoughts that this enhancement is benign. I freaked out a lot more when I picked up my report this afternoon and saw that she has given it a Birads4. I know that Birads4 has a 23 - 34% of it being cancer. She says in her report that it is a new area of clumped enhancement, deep to the nipple. They have been reporting an area near the nipple in many prior reports including mammo, several MRI's and ultrasounds. But they always said it was scarring from the surgery (prior biopsy). This time, now they are saying that it is Birads4. Although it is pretty much in that same area, they are saying in this report that it is a new area. I am not sure what to believe. What is the point of having MRI's done when in the end it is a cancer diagnosis. The rad wants the prior mammo to be magnified to see if these are calcifications. If no calcifications are seen mammographically, then she suggests a MRI guided biopsy.
My Onco. who is not part of John Muir, but has his independent Oncology office, had told me that the first time around when I was first diagnosed in 2010, John Muir Rad had missed my cancer, which they should have caught. The doc who had missed it, is the same doctor who seems to have missed it again. He wrote about this area in the July 2011 mammo saying it is benign and most probably scarring from surgery. I dont think I ever want this rad to read my scans again in the future, as I dont trust his judgement. I am really mad at myself for not being proactive regarding this area on the right side. I am seeing my surgeon on Feb 7th when she will help me understand my options regarding surgery/biopsy. I hope to get this thing sorted out soon, otherwise, I am gonna get out of my mind.
In any case, ladies, I am not sure but I think I am not going to be able to handle this. What will I do? How do you all stay so strong. I can't do this a second time around. Why did she give it a Birds4. Does anyone know whether it is an almost confirmed cancer diagnosis.
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Lovelyface- you are on target!! You are a concerned patient not bossy but concerned. The first doctor I encountered when I embarked on this journey told me these exact words be concerned and informed. Pray for the best but cover yourself. ***HUGS***
Suze- I am thinking chemo side effects as well. Follow it up but try not to dwell to hard on it. Maybe once you are btwn cycles the side effects will ease and then you will know if it is the chemo or not.
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Lovelyface,
I'm so sorry your going thru this all. My thinking is they put that code down to expedite everything. Did your MRI show anything regarding the pain your were having in your neck?
LauraJane, praying your up and out of that hospital!!
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I haven't even had an MRI for the brain/neck yet, the insurance is taking their 30 days to authorize it. Someone here had told me to ask for a 7 day expedited request which I thought was a great idea, but at the same time, my pain began subsiding. I feel it is an overly stretched muscle or something. I am hoping not having to go through a brain/neck MRI if the pain completely vanishes, which it is. That is the reason why I did not ask for a 7 day expedited request. While that is still pending, this new problem has emerged.
Regarding the Birads4 - I wish that they are putting this down to expedite everything, unfortunately, that is not the case. They have a list of Birads listed somewhere on this website, where they explain what each one means. It is not supposed to fool the insurance into doing things faster, but it is actually a first step to a diagnosis, and I know Birads4 is not good, it is better than Birads5 which is a sure case of cancer, but Birads4 is suspicious and I am sure the doctor already knows what it is. I hope and pray to God that if it is something, it is just DCIS and nothing more. My God, I had just had an MRI in July, 2011 when it was all clear.
Thank you nice ladies for your posts. I will keep you posted. Yes, my hats off to all the strong women who are facing this day in and day out. You are all such amazing women!
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Lovelyface, I'm very glad to hear that the pain is subsiding finally! I'm thinking it's only suspicious and it will turn out to be nothing!! I'm thinking of you.
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Hi Lovelyface - I don't post here very often, but I read this board every day. I remember that you and I started chemo at around the same time, so I've always felt a kinship with you
I'm so sorry you are having this scare. I had a similar experience last month....suspicious finding on mammo, requiring a stereotactic biopsy. I was sure the beast was back, but luckily the findings were B9. I also had a false positive on a breast MRI and from what I hear this happens a lot. Thinking good thoughts for you and hoping this will turn out to be nothing.0 -
mccrimmon and Hope - thanks so much for sending me your good thoughts. Hope - it seems like you were diagnosed a month before me and yes, we seem to have similar diagnosis, and similar timings. Good to know that! So far so good, thank God, but if only I can get past this scare. I am glad to hear yours was B9, that must have been the best news ever. It seems like you have gone through 2 scares, one on the mammo and one on the MRI, Wow! I swear I will celebrate if I can get past this scare, maybe I will do things a little more differently if I get another chance.
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"Good evening beautiful ladies! I'm still here in my luxurious suite. Private room, pretty people in pink catering to my every need, delicious gourmet food, freshly ground latte in the morning, fresh squeezed orange juice (I'll change that to "Bloody Mary's) served by gorgeous dark tanned (muscular) men in their tiny speedos, palm trees swaying in the wind, listening to the waves and feeling the soft spray of the ocean misting my dark tanned toned body...."
LJ, you are too much. Thanks for the laugh, you had me going for a moment...I remain amazed at your resilience.
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Laurajane - I was envisioning those palm trees!!! I'll definitely watch the Today show on Friday. Thanks for the heads up!
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Lovelyface - When I had the MRI, I already knew I had BC (found on mammo & confirmed through biopsy). The MRI showed a 2nd suspicious area, which eventually turned out to be B9. I guess I didn't count that as a scare, because I was already terrified about tumor #1! The latest incident was a lot more disturbing, but everything turned out OK, thank G-d . Wishing you the same good luck!
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well ladies,
my tumor has shrunk from 5cm to 2cm 3 more chemos, then surgery in march, the senses is to have radiation before plastics. my onc suggest hit with all your guns the first time..I wanted to have reconstructive surgery at time of mastectomy , but they believe we will get a better response without plastics. As we all know, we do not know much until surgery..so for preparing myself for a breast when, my margins and nodes are well.... you know...I decided to remove the breast then make a decision down the road ....I think I'm learning one day at a time.
I really don't want to do this bullshit again .......
Does anybody have any info on plastics at time or surgery and recurrence>>I will love to her more
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Wow Laurajane- As I first started reading your post, I thought you were in the Waldorf Astoria of hospitals! If I ever have to go back to a hospital, that's where I want to go!! It was a great dream though!! Glad you are feeling a bit better and hope you get to go home soon!
Bak- Glad to hear your doctor is taking care of you, but so sorry you are having so much pain. Hopefully this latest procedure will get you on the right track to healing!
Lovelyface-sending good vibes that the enhancement is nothing!
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Lovelyface: Just want to chime in and wish you all the best for a B9 result. Honestly the worst thing is waiting on these scans and next steps. Hope you can distract yourself for awhile.
mtnbiker: congrats on such a good response to the chemo - that's awesome! I'm sorry I can't help with your questions though - I just had Lx and no reconstruction. There are some other boards devoted to reconstruction, so you might want to post there as well.
Laurajane: That was a good chuckle. You rock!
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Love it Laura Jane....next time the Waiter comes in be sure to have some $1 bills ready!!
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Mtnbiker...good stuff with the shrinkage!!! Chemo is working..great news!..get that sucker.
Laura..omg..I was sitting at my desk..reading your post..and I started going way into la la land...I swear I could smell the sun tan lotion...and then you woke me up..dang it..get out of that hospital soon..ok?
Lovelyface..hoping for benign results...not going to say anything like it will be fine..yata ..we know too much to do that..but..as we say on here..you KNOW that they are going to very careful with us..which means just that...we just got to deal with it...and hope for the best.
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1candle - I love a happy ending - so glad you got yours, sounds like you were due.
Monika - Woo Hoo! Great news.
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Hope everyone had a good day. It was so nice here, I had lunch at an outdoor cafe!
Enjoying the small stuff...0 -
Next bout with chemo tommorrow, my second dose hope it will be ok i am so new here don't know what to expect hair is shedding and my head and hair hurt can hardly lay my head on my pillow i'm trying to be strong but am starting to go weak so much more to endure
Everyone here is so strong and positive xxxooo
Great news mtnbiker how often are you getting your chemo and what kind?0 -
Eva57- oh, so sorry you have that awful sensitive head! Once mine started going, I shaved it myself, very empowering. It helps if you put something slippery over your pillow, like a slip or night gown, less tugging at night.
Losing my hair, hit me hard - both times! I think because I then, felt like I looked sick. The scalp sensitivity will diminish. You will get through this! One day, this god awful experience will be a dull memory and your life will not revolve around doctors appointments. I promise!
I hope everything goes well at your infusion tomorrow. Rest often, your body needs it. Holding your hand... Karen0 -
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mtnbiker- I was told that it is best to wait until after radiation to get expanders put in, but I have heard from many ladies that their docs said it was just fine. I think it depends on your doc and what you feel after doing some research and talking to ladies who had TEs put in before radiation.
I don't post here often, but I try to keep up everyday (lurker). Well I just wanted to share some fantastic news with y'all. I was originally staged at 3 (I still don't understand why). I had neoadjuvant chemo, 12 taxol followed by 4 AC that I finished 12/27. January 23rd I had a unilateral mastectomy with ALND. I received my pathology report on Tuesday and it said that there was no residual disease and the nodes were all clear. Blew my mind!! A pathological complete response! It is what I have been visualizing during each infusion and I almost think I am still dreaming. I am over the moon! I now have a question though: Should I go ahead and get the radiation I was planning on beginning in March?? I was told that it is up to me. My thinking before receiving the path report was to do all I can now, but with no residual disease I don't know what the radiation will do except for more damage. What do y'all think?
LauraJane- I hope you are out of the hospital now. Sending love your way.
Suze- I hope your trip is going well. Have lots of fun and stay in the NOW!
Lovelyface- I hope it is nothing. and you are FAR stonger than you think.
The best part of my morning thus far has been playing outside with my doggies! I just love their energy and zest for life.
Love to all of you!
Atlantis
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Congrats Atlantis!!! As far as the radiation, that's a personal choice but I would probably do it.
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Thanks, Heather. That is what I am leaning towards.
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tisthyme - I probably wouldn't do the radiation since you had MX. Everything I've read said that radiation is usually only needed if you have a LX, which I did. I still am concerned about getting radiation since there can be long-term effects. One study I read said that the rads helped to prevent LOCAL recurrence, but that long-term heart problems (that they thought were from the rads) were killing survivors. I'd say, do more reading and research before making the decision. I'm still trying to convince myself that I have to do it. What good is preventing local recurrence if the rads are going to kill me early? JMHO
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