Calling all TNs
Comments
-
Good afternoon. Found out yesterday I was triple negative. I found the lump in my right breast - 2.17cm - 4 months after my last mammogram/ultrasound. US biopsy and MRI showed nothing else in right breast, nothing in left and nothing in lymph nodes. (or at least that's what my surgeon has told me.) Her nurse told me yesterday that since it's invasive & TN - I should expect surgery, radiation and chemo. There's no game plan yet as I'm supposed to talk to my surgeon on Monday. I also have a 2nd opinion set up in NYC - and setting up an appt for a 3rd with Sloan Kettering.
I'm petrified. The more I read - the more afraid I get. I want this over with. I'm afraid to get sick from chemo. I'm afraid of my 7 year old son seeing me that way and I'm afraid to miss ANY part of his life!! I'm trying to live day by day... (Is anything going to happen or change today? No? - Then don't think about it and enjoy your life)
I don't want to do this and - more importantly - I don't want to do this again in 5 years. (Good Lord - he'll be 12 then!!) I just feel like crying all the time and hiding in my house..
0 -
Joesmom, hello and welcome. OF COURSE you are upset. You have been through a rough time. ..diagnosis and the start of treatment is the hardest part for many. Me included. But trust me, things will be better. You can fight this and win! But you will need energy to do that, energy that you are nowusing in stress and anxiety. Please try to get to a more calm place. If you pray, have others pray for you to be calm and strong. If your days are shorter than you wish, do not give one of them away to fear. Good health can be yours again! Hang in there
0 -
Joesmom, take a deep breath, exhale, repeat. You are doing what you can at this point, which is to gather information, including from opinions and second opinions. It takes what seems an eternity to get answers, but you will soon have a plan.
Personally, I haven't been "sick" from chemo, more like just not myself for a few days after infusion. I've found that the best advice I read was to stay active. I continue to walk my dog and go on short hikes most days. I take a day off now and again, but who doesn't?
I also found that for me, it was best if I stepped away from Google in the evenings. If I didn't, I didn't get a lot of sleep that night.
Feel free to ask any questions you have, this is a great group.
0 -
NancyHB...I have chosen to do TCx4. However, I have the option of adding two additional infusions. I saw two oncologists. One preferred the ACT and the other said his hospital was totally eliminating A because of possible future heart problems. I just found out yesterday that one of my friends who is a 30 year survivor was TN. At the time her doctor told her she had the basic "garden variety" type of breast cancer! She did the old CMF and is here to tell the tale. It's all a crap shoot and we have to hope we are holding the winning dice
0 -
Nancy and Joesmom, I'm so sorry that you're here but glad you found this board. It's a great support during every step.
ScotBird, I think I was confusing in what I was saying. I've decided on a BMX, but I once again ran across the study talking about LX + rads having better outcomes for TNBC. I was startled by that the first time but I think I dismissed it because I didn't think it accounted for stage (later stages are more likely to have both mastectomy and poorer outcomes, but they're not related). Now I can't remember, but it's freaking me out. A big part of choosing mastectomy is to most likely avoid radiation, and that seems to be the problematic part here.
What I CAN'T find again is the study talking about improved outcomes with mastectomy for TNBC. Grrrr....
(Here's the study I found that has me upset: http://cancerology.blogspot.com/2011/06/lumpectomy-better-than-mastectomy-for.html)0 -
Well snap - that's kinda scary because I can't have rads again. Interesting article though; I'm going to keep researching this topic. Thanks for sharing, Amy.
Cathy, I'm starting to agree with you - this all just feels like a crapshoot sometime.
0 -
NancyHB...even though we TN's have a higher chance of recurrence, I have met many TN women who are very, very long term survivors. Also have met several ER+ women who had cancer come back...one after 22 years! So, I'm trying not to think statistically. I'm doing everything I can do medically and when I finish my treatment I intend to make food my medicine. This is basically a quote from a woman who is a ten year survivor of TNBC. I've read that a low fat diet and exercise is the best defense against a recurrence.
0 -
welcome Nancy and joesmom. Sorry you have to be here but glad you were able to find bco and this board. Hugs to you both.
Kayak thanks for the link. It's cool that they are doing that on triple negative day (3/3)
0 -
Hi. Just wanted to introduce myself. I was diagnosed on Jan 28th with breast cancer. It took awhile to get back the results on my HER2 (fish) but finally got it and it was negative. So here I am triple negative. I am 47 y/o (just had a birthday on 2/13). I'm the mom to two amazing kids, ages 9 & 5. And I am very fortunate to have a very supportive husband in this, who is absolutely dedicated to finding the best care for me.
I had been being monitored for over 3 years for a lump I discovered in my right breast while weaning my daughter. I faithfully went every 3 months for followup mammo's and ultrasounds for two years. At the two year mark they said it was most likely benign and moved me to every six months. I could feel it get larger. Went in for my ultrasound and again was told it didn't look suspicious but recommended a biopsy simply due to the growth. Then at the surgeons office she wanted to skip the biopsy and go right to a lumpectomy. This however didn't feel like the right move to my husband and I. We really felt like the biopsy should be first before cutting into something that we had no idea what we were dealing with. Thank god that was the right decision. At this point we traveled to MD Anderson in Houston ( a 10 hr drive) .... they biopsied it and it came back malignant. Of course, I felt overwhelmed, terrified, and disappointed in the care I'd gotten over the past three years. As we have moved forward with this. I have seen a local surgeon and oncologist. I am suppose to go back for the followup with MD Anderson oncologist in March (that was the soonest they could get me in) and see what their plan of attack would be. And we just returned from KUMed in Kansas City. I was VERY happy with the dr's at KUMed and we are leaning towards choosing them as my team. The oncologist there has suggested a newer treatment plan that they are seeing very good results with triple negative. It would be a treatment once every three weeks (carboplatin & taxotere). Has anyone else had this regimen? How bad or good was it? Everyone is on the same page and planning a double mx. I have very dense breasts and many other fibrous areas in the left that have been monitored as well. And it simply seems like russian roulette to leave it.
My biggest concerns are my children ... they seem to be little troopers so far but how will they hold up once I start chemo? I want to maintain our "normal" routine as much as is possible. We are honest with them and have a very open dialect with them. They both know they ask ... we tell (of course as is age appropriate). I try not to focus to much on the recurrence issue with tn. I am determined to not be one of those statistics. I ate pretty healthy prior to this and have drastically stepped up that. NO sugar, green juices, ginger, no processed foods, organic only, etc. I have increased my exercise. I think one of my biggest challenges to tackle is the anxiety and stress. I must find a way to better cope. I am interested in starting yoga and meditation. I feel deep in my heart that my many years of high stress and anxiety (panic attacks) led me to where I am. But I also am trying to not blame myself.
Well, that's where I am at.
0 -
I am seeing an increase in woman getting carboplatin added to their chemo. Your kids will adjust through the process. I too did a 6 months sit and wait, when i should have had it biopsied then - frustrating.
0 -
Azrescue, yoga has been a huge help to me throughout treatment. And, yes, lots of encouraging news about carboplatin. Hang in there.0
-
Azrescue and Joesmom23 you have come to the right place. There is so much knowledge and support with BCO. Please know there may be more than one right answer as you make choices. When I was diagnosed wanting to live long enough to have grandchildren was really important to me. I am six years out and about to meet my first grandchild. I am 100% healthy and looking forward to seeing this little boy grow up. Hang in there!
0 -
I asked my MO about carboplatin, but she didn't think my immune system would be able to handle it. Definitely ask about it when you have your meetings.
0 -
Dear All,
Trying to do in hurry as have meeting to go to. Sorry not using names as don't have time to do my chart I normally have when I post on here.
Here is a link to chopra guided meditations.
http://www.chopra.com/ccl/guided-meditations
I use them all the time. I added it to my home screen on my smart phone so I can do it when I get a chance or feel I need it.
I go to yoga twice a week & walk when I can with friends. We make a chat fest out of it. Funny to watch I have been told. I firmly believe attitude is a big factor in our fight with TNBC. I keep my B12 & D3 in high range.
My UM Sylvester facility has excellent services for us BC people. Counseling, group meetings, acupuncture, yoga & exercise classes, etc. I am lucky as my town has yoga classes free for us over 60. It was through the school system but they cut back on their budget & they stopped the funding. Our town picked it up. We are grateful. We have good senior services programs. I have my good & bad days & go to counseling to help cope with the what if/why me mental games we go through. I am 3 + years out & feel blessed. I eat smart , exercise, get good rest & keep my mind occupied with good stuff as much as possible. This blog has helped me many times. Smart, mostly upbeat ladies trying to live full productive lives. Supporting each other is so important in our fight & this Group is the BEST!
Much love to all, may you find this is only a bump in your road.....
Marsha
0 -
My 9 yr old is taking this the hardest. We visit a therapist tomorrow evening to monitor his moods/sensitivities. This isnt necessarily new behavior for him but it's a new trigger so we need to keep things in check.
If you have kids don't forget to look into Camp Kesem to see if there is available spaces for a free camp this summer for your kids!!
Loving our new addition Felix! He is the best cuddler and learning some tricks. He listens quite well and doesn't complain when we put him in his crate. Gotta give him some time to learn the house rules and what he is allowed to chew on!!
Had my first chemo on Friday - AC then a Neulasta button on my belly (aka Iron Man) that administered Saturday evening. Easy peasy! I just feel blah. Not good not bad. Uninterested. Unfocused. No nausea no fever sorta achy but nothing significant If I just sit here I'm ok but I get up and feel odd. Jut hoping my sennakot/lax works soon. Constipation/Diarhhea is my nemesis. And I am drinking more than I normally ever do.....so that isn't the answer unless I get a bladder cath!
0 -
Hi HausFrauMi, I am so fascinated by the Neulasta button! I completed treatment in May of 2014, and had to return to the clinic the day after my chemo for my Neulasta shot. Just shows how fast the technology is changing with the fight of the ugly monster. Not sure if any one told you, but for me, the first Neulasta was horrific with bone pain. I thought someone was driving a semi thru my pelvis. The pain was like nothing I ever experienced in my life! Then a wonderful woman on one of these boards told me about Claritin. I don't know why or how, but it was a wonderful tid-bit of information. I took Claritin everyday from that point forward and I had very little pain with the subsequent shots. (Also helped with the spring time allergies) !!
I had to smile about the way you said you just feel blah. Yep, that sums up my chemo experience. Rounds 5 & 6 were complicated for me... another tid-bit, I didn't know until too late, you can ask for fluids via IV. For round 6, it wasn't an option, I was sleeping a lot, and not keeping up with my fluid intake and was dehydrated. 1 week post chemo, I went in for a fluid IV... AMAZING how much better I felt!
Best wishes to you as you go thru this! You have found a great group of women for support.
0 -
Hi everyone! It's been at least a month since I posted here. Welcome to everyone that is new. It's always saddens me to hear of another on diagnosed with tnbc, but this is a great place for support.
laika_in_space, I wanted to specifically address your question about residual cancer in the lymph nodes after neoadjuvant chemo. Like you, I did have residual cancer (in two nodes and no residual cancer in my breast). People like you and me are at a higher risk of recurrence, but it is NOT a death sentence. I just passed the 2.5 year mark a few days ago and I'm doing fine.....no sign of recurrence. It's scary in the beginning knowing that we had residual cancer in our lymph nodes, but with each day that passes, our chances of not having a recurrence gets better and better. All I can say is hang in there....it does get better.
Ally, I'm so glad to hear your bumps are fat necrosis. We LOVE fat necrosis!
Wishing the best for all my wonderful TNBC sisters.
0 -
asrescue I also had my tumor found 6 months previous and was told to wait and they would be monitoring it. I was not happy and insisted on a biopsy then. My bs at the time wouldn't do it because at the time the tumor was small,sat on my chest wall, and they said it was benign looking. Needless to say 6 months later my benign looking tumor doubled in size and was malignant. That bs was no longer my treating surgeon and I moved forward with a great team at a major cancer hospital. And yes I too led a very stress filled anxiety ridden life before dx. Now I try to appreciate the little things in life. I have lost 23lbs, eat clean and healthy, and exercise 2-3x a week at a gym. If I feel the old stress and anxiety taking over my life I now take a Xanax to help.
Haus glad your first ac went well. The first for me was a lot of nervous feelings not knowing what to expect. After that I knew what my SE's were going to be. As for constipation stay on top of it. Stool softeners helped me at first then I switched to senacot. You will find what works best for you. And definitely work with your team and nurses. My nurses were the best about giving me advice on how to treat my SE's.
0 -
HausFrauMI - we're just down the road from each other. 😊 I hope you're doing well. I'm curious about the Neulasta button too, and will ask about it tomorrow. I'm pretty sure my clinic doesn't use it but it would make my life (and work schedule) so much easier. I'm already stocking up on Claritin; I had a lot of bone pain with Taxol + Neulasta until I really committed to the Claritin.
I spent the day getting a second opinion at UofM yesterday and it was interesting and enlightening. Met with the PS and found out I'm a good candidate for flap surgery (I can thank my kids for that). Their tumor board met, and their pathologist reviewed my slides, my original slides, and my Oncotype test (first time earound) and they believe I have a local recurrence of my first cancer. My original tumor was 50% ER+ and 10% PR+, so they explain that because of that, some of my cells were already TN. But any ER+ is treated as positive in order to treat with Tamoxifen. So some of those nasty little TN buggers survived chemo and radiation targeted boosts...and came back. So I have no stage now, but rather am Stage 1 with local recurrence.
I'm still trying to absorb all of this information. It feels scary (but then again, what about BC isn't?). Must. Not. Google. UofM indicated it would be harder to treat, but is still treatable so we move forward and do what we can. Guess that's all I can hope for.
0 -
Hello All
I love this thread I will participate fully.
0 -
Simplelife, congratulations on your 2.5 years!! Thanks for the encouraging words!0
-
I have a lot of catching up to do, but I'd like to say welcome to all the newcomers. Lots of Michiganders lately, so howdy neighbors. I'm sad to see so many of you here, but this is a wonderful group!
0 -
Kayak:
thanks much--I registered for the session as well.
0 -
Nancy if the button is avail I highly recommend! Saves a trip to the doctor!! And it wasn't in the way for the 28 hrs.I think I prefer belly to arm because I can see it myself and monitor it.
0 -
azrescue--welcome! I'm sorry you had to find us.
Your kids will be all right even though it is a rough experience for everyone. Mine were 9 and 5 as well when I was diagnosed (have since turned 10 and 6). I keep an eye out for them, made sure to let the school know what is going on (they have been amazingly supportive to all of us), and the children will, I think, be stronger and more compassionate for it.
I mentioned something a few days ago about being concerned about stuff I'm finding out about BMX vs. LX. Ugh. So here's what I finally emailed my surgeon this morning, along with his response. I really don't feel like my question was answered, though.Good morning, Dr. ______.I had a couple of questions I hoped you could answer just to reassure my mind. I unexpectedly came across a study that surprised me and wanted to know your thoughts on this vs. the study that showed potential improved outcomes with mastectomy for younger TNBC patients. I remember seeing this study some time ago and dismissing it for some reason, and I’m hoping you’ll be able to say, “They’re idiots and didn’t factor in that later stages are more likely to undergo mastectomy but also more likely to have reduced overall and disease-free survival.”
http://www.ncbi.nlm.nih.gov/pubmed/21670451
Also, is there any possibility I’m putting myself at potentially GREATER risk of recurrence (distant or otherwise) by choosing mastectomy rather than lumpectomy? Occasionally I have seen mention of the idea that the body’s healing response to a serious surgery such as mastectomy may be itself oncogenic (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171628/). I’m hoping I’m misunderstanding this.
Thank you so much for your time and any guidance you can give me.
Sincerely,
CarolinaAmyAnd here's his response this evening:
Hi Amy,
Interesting but just one study.
I would not over read it.
There is always some risk of complications and reduced immune function with more surgery but you are young and healthy and should do well.
Kind Regards,
_____ __________
I appreciate him writing back....... but this really didn't answer my questions. Please help me.
0 -
Amy for some reason I couldn't get the second link to open up. I'm having to use my phone because our computer is acting wonky. This is going to sound stupid probably, so forgive me as I just woke up and am sleepy, but are you saying you read there's a higher chance of recurrence or mets in women who have had a mastectomy vs those with lumpectomy and radiation? This really makes me even more scared than usual! Sorry I haven't caught up with all the posts because my family is visiting. I had a double mastectomy then chemo and they said I didn't need radiation.
0 -
I vaguely remember this study and talked with my MO about it. What he said is many opt for mastectomy w clean margins and then do not have rads OR chemo --- so no follow up treatment. My stepmom is one. She feels confident they got it all, so "why put my body through anything else". She had a BMx and opted for no rads/chemo even though her MO suggested one or the other as follow up to be safer. Those who were getting lumpx only were tending to get a follow up tx "just in case" for the microscopic cells.
So it makes logical sense to me, that if you cut out the cancer, but there are microscopic cells remaining, and you do nothing else about them - one way or the other - you risk a higher rate of return.
0 -
Amy, I've really debated responding because I don't like to talk studies on the thread. For me, they always bring up fears and I hate to do that to others. But I can tell you're scared and having a really hard time with this decision so I'll tell you what I learned during my research. I myself had to have a BMX since I'm BRCA+. But as you know I'm also a researcher and what I learned was it's not necessarily the BMX or LX that causes better or worse outcomes, it seems to be the rads. Those who receive rads after MX, regardless of node status, do better. This is why I AGONIZED over rads. I was node negative, so by all accounts did not need it based on today's standards of care. However, I found multiple studies saying those who had a BMX followed by rads, who were node negative, did the best in terms of overall survival. Those who did not have rads did the worst. Even worse than those with positive nodes. Again, this was thought to be because of the rads. So...you'd think the rads would have been a no brainer for me right?! No. I had 4 opinions. I even spoke with multiple doctors at Memorial Sloan Kettering thanks to a good friend who works at the breast center there. It didn't make any sense because the risks far outweighed the benefits for me. This was mostly because I had a pCR. If I had not had a pCR, I would probably have done rads. To this day, I still question this decision. I'll see if I can find those studies and PM them to you, but try googling radiation after BMX node negative.
Edited to add: Those studies all concluded that today's standards of care should reevaluate who receives rads...and possibly many more patients would benefit regardless of BMX, LX or node status.
0 -
Ally, mybreast surgeon, medical Onc and a radiology Onc all said I did not need radiation because of the negative nodes and good margins with surgery, and the risks were too great so I trusted them but studies like this obviously prove otherwise! I can't undo what's already been done though. I'll never know if I had a PCR because I had surgery before chemo. That's another decision I regret now that I know more, but oh well, nothing I can do about that either! I still have intense fear of mets every single day. It sucks but it is what it is.
0
