Calling all TNs
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Beautiful Cassylou!
Stupidboob update us as soon as you can
Aggie the wig looks great
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Hey all!
Busy day for everyone! Well I have news...... THERE IS NO SPREADING! The look of joy my mother had when her radiologist said her PET scan only showed cancer in the breast area and lower neck was a relief. He assured us that this is normal and it is in all the "breast cancer" spots. All of your prayers helped!
Now she has surgery to get her chemo port in next Friday and a trip to Mayo on the 26th! Everything is falling into place.
All of her doctors here in Bismarck are FANTASTIC. They gave us so much information and had a positive outlook on my moms diagnosis.
All I have to say is the worst part is over and thank God we have a plan. Now we will take each struggle, setback, and success as they come.
Love you all 😘
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TDaughter that is fantastic news. Hugs to you and your mom!
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TD, I am soooo happy for you and your mom. What great news. You both must be so relieved. Now you can begin planning.
Hugs to you both
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Love the wig!!! I have had mine on for a year. It is over my ears now, but we will have a shaving party with out college aged boys (twins) when they are home soon
I may go short this time, a lot like yours
Cassie, thanks for the pain story. I had stabbing pains in my breast before tx: now with the uterine the pain in the abdomen is really bad, but controllable. I vision the pain coming as the tumor and other cells fall apart
MO appointtment tomorrow to find out if Blue Cross will cover abraxene instead of taxol, how many tx, etc.
Please know I may not post daily but I celebrate all the victories here, and lift up all needs.
Blessings,
Kath
The Mission is Remission!!!
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TD, I am beyond thrilled about the wonderful news!!!! And your mom was convinced she was going to 'light up like a Christmas tree'. YEAH!!!!
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TD
Great News!
Now it's time to Kick BC's Butt!
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Aggie...your hair looks great!!!!!
ALHusband...just wanted to say you remind me so much of my sweet husband. You seem to be such a caring and kind man and I am sure your wife appreciates that.
TDaughter...so happy you and your mom got good results from the PET. Now you can move forward and beat this beast. Will keep you and your mom in my thoughts and prayers.
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Have a blessed weekend everyone: This is hanging in my home. Good reminder
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TerrifiedDaughter, I've been keeping up with your posts but haven't posted because we've been so busy moving. BUT I am so happy for you and your mom the cancer didn't spread! Time to move on and kick cancer's arse!!
Thinking of everyone and praying for more good news for those waiting for results! I'll read more tonight. Back to unpacking! Ugh...
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Hey All!
Sorry I haven't responded to everything yet. I am currently back home (at college), so I have been trying to get my life figured out here. Definitely miss my mom and there were lots of tears shed while we said goodbye but I am hoping it isn't for long. Since she is getting all of this figured out we decided to allow myself to finish school. My stepdad's work gave him a new position so he could have a schedule that formed around my mom...how amazing! So he will be able to be there for her right now and then I can go home a lot more when school isn't so demanding.
It was an ironic celebration on Thursday. We celebrated that my mom just had "normal" breast cancer. That she had ductal and that is didn't spread. No one has ever said "yay I have cancer" but we did. We had the complete worse scenario in our heads so it was a relief when they told us otherwise. We all decided though that we need to keep a level head through all of this because we still have a long ways to go.
My mom says she can't wait to meet you all and to discuss all of these wonderful treatments and experiences. She is still trying to get work in line (which I told her not to worry) and she isn't ready to take this step. I think she thinks the longer she waits, the less real it feels. I can't imagine how she feels. I was so strong when I was home but when I got back to college I broke down to my boyfriend. All my friend have been so supportive but it is hard. I hate seeing my family in pain.
This month is also bittersweet in a way. In high school we always wore pink during October. I was always like "yay for pink stuff, woo" and now I see how amazing that is and how moving it can be. I guess I don't know if bittersweet is the word to describe it but I am just thinking back and I never thought anything of it. Now I look at it and say wow. The mall in Bismarck is covered in pink flags, stores have pink attire, and I am rocking "together we will find a cure" bracelet.
It is all so real now, and I applaud all you wonderful individuals for fighting through this and being the strong, supportive women, and men, that you are.
I can't thank you all enough for the information and support. I found a pink ribbon journal that I wrote a lot of information down for my mom and some uplifting quotes. I told her she needs to write everything down, because one day we will look back and see how far we have come.
Bless you all.
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TDaughter, so glad to hear things are going well with the family. Definitely celebrate the little things!
I have a question for all of you who had positive nodes. I had 1 of 5 positive nodes, a lumpectomy, chemo (AC + Taxol/Carboplatin). Finished chemo 9/25 but I'm still getting random pain/soreness on my cancerous side in my armpit where the nodes were removed. Sometimes I feel it a little further down my arm, sometimes I feel it more towards my back but close to my armpt, etc. I'm getting an MRI hopefully this week to see how the other nodes responded to chemo and to see next steps for my next lumpectomy and if they should remove other nodes before radiation starts.
My question...has anyone else had this uncomfortableness/pain even after chemo finishes and have the nodes end up being clear? Could it be nerve endings healing? Slight lympedema? I'm just so paranoid that there's still cancer in there that's just going to keep on growing until rads start.
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Stef, twinges and zingers will prob be a familiar feeling for a long time...maybe forever...I get them and I feel safe to say we all do. For you at this stage of treatment your nodes and the cancer are still responding. Yes it could be some LE too, I "listen" to my body and in particular to those node areas for lymphedema changes. I went to a physical therapist who specializes in lymphedema, thru the PT dept at our local hospital. I felt like I had slight LE, but really just wanted to learn how to stay ahead of it. I got fitted for a sleeve that I wear when I feel it is necessary, not often but love having it. My insurance paid for it. I recommend everyone get a lymphedema evaluation, to learn the signs and symptoms so you can keep it in check. You may never have problems just good to be proactive. If you do have insurance, you prob have hit that out of pocket maximum so you should be able to do these things without having to pay a co pay...sweet! .Get done what you can before the end of the year.
I had a healing hands on therapist tell me to visualize the cancer leaving my body. To lie down on my back, put my arm over my head, and visualize the cancer leaving my body thru a "window" in my armpit...I know it sounds odd, but I did it, and I know the mind and body respond to each other so strongly. This positive mindset, great medical treatment, and prayer kicked my cancer. I want this for you too and for all of us. Do not fear all twinges,and let us know about the MRI. Hugs to you!
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Thank you Meadow!
Exactly what I needed to hear right now, being in this limbo state in between treatment is harder than I thought! And I will try anything, as odd as it sounds, so laying on the floor visualizing the cancer leaving will be attempted. 
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Hi All,
I am so far behind in responding that it is hard to catch up, but I have been reading and sending BE WELL vibes to everyone!!
Ally, - I am glad that you got away for a few days!
Luv, - Take your time settling in! You surely made that move quickly!! We have been considering a move for years, and havent made a decision!
TDaughter, - So happy that your mom's scans went well! She will get through treatment and will be ok, - I hope that you can remain at school and have a successful year!! My daughter was a freshman at a school, about 4 hours from home, when I was first diagnosed. I was able to get there for parents weekend, and she came home for school breaks. It was FINE!
SA8, - I copied the picture of that sign and sent it to my kids!! Seems like all they do is work =(
Stef, - I agree with Meadow, - those aches, pains and twinges seem to remain forever =/
Meadow, - I will try those healing thoughts!
Kath, - I hope the pain is lessening and that you are on the road to recovery!
Arlene, - Your hair looks amazing! I am months ahead of you, and dont have nearly the thickness on top that you do!
Shari, - I hope that you are getting stronger each day!
Cocker, - I hope that you and your husband are doing well! (Your posts are among the very best. Are you a writer as a profession??)
I know that I have left many here out, - but you are in my thoughts and heart!
Hugs from NYC
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Hi all I would like to join you triple negative ladies. My cancer originally showed as a benign looking 4mm mass on my left breast at my annual mamo last October. I had an ultrasound at the time but they couldn't find it there. I saw a breast surgeon who had seen me in 2004 for a stereotactic biopsy on the same breast (2 sites benign). He agreed with the radiologist & recommended a 6 mo follow up. I wanted a biopsy but he said it would be too difficult due to its position on my chest wall. I was not happy but waited. Well 6 mo later before my 45th birthday it doubled in size to 8mm. From there I changed surgeons and had genetic testing (mom & grandmom had bc at 69), lumpectomy & reexcision, and started chemo. It has been a long scary ride being diagnosed triple neg. Isometimes get angry that I didn't push harder for a biopsy last year or insist for a second opinion at the time. I am grateful for bco and being able to connect with other women to know I am not alone. I look forward to a day when cancer is not the first thing I think about in the morning and the last thing I think about before I go to bed.
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Hey all. I wanted to post an update and get some feedback from you about next steps.
I've finished my 4 rounds of DD AC and had an ultrasound today. The tech let me look at her image and measurements, but of course nothing is official until the radiologist reviews and reports her findings. Anyway, the last measurements I had for the tumor were that it was at 1.4 cm when found at the end of May, then at 3.4 cm from an MRI at the end of July, and it got bigger than that (at least by feel) by the time I started chemo 3 weeks later. At this point, my breast feels normal again and the tumor can't be felt through an exam. The unofficial ultrasound measured it at 1.07 cm now. Yay AC! And I start 12 weeks of Taxol on Oct 19.
My surgeon at Moffitt told me call when I was at this point to get surgery scheduled. I talked with my nurse, who is so amazing and knowledgeable - I really trust her judgement, and she said that I would be getting a modified radical mastectomy of my left breast and all nodes on the left side would come out. I have at least one positive node from biopsy and showed three enlarged nodes on the MRI. Then would have to do radiation, wait at least 9 months before proceeding with recon of the left breast and possible mastectomy of the right breast.
I really didn't think that all the nodes would be removed. Is this the normal treatment? My nurse did say, why would we want to risk leaving any cancer behind and I agree with that. I guess I'm just feeling overwhelmed by this news. I was prepared for everything else. It's like I know the big hits are coming, so I'm not shocked by that stuff - chemo, surgery, radiation, but then there's something that's relatively small in this whole deal but I wasn't aware of it knocks the wind out of me. Sort of like it takes all the false strength I was using to hold up was really just a toothpick and easily taken away the whole time.
And to touch on what everyone is going through - I've been keeping up with your posts and you have no idea how much you help out. Just knowing that there are others going through the same thing and how you get through is inspiring and helps me. Thank you!!
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knitnpurl - I have two comments based on what you have told us and my own treatment here in Southern California. One, ask about adding Carboplatin to your Taxol chemo. There are several recent studies (mostly in Germany I think) that show that the addition of the Carbo is very effective against triple negative and many of us across the country are having it included in some way. I have it weekly along with the 12 Taxol. Others have it added to the Taxol every three weeks or so.
Second, everything I have read says that all the lymph nodes should NOT be removed. Removing even a partial number of lymph nodes can cause Lymphedema, and while that it preferable to cancer, it is not a fun lifetime condition to live with. I had two lymph nodes that were positive for the cancer and a total of eight removed on my left side. Although there are a bunch left on that side, my nurses tell me that I am on the border of being a Lymphedema concern. To keep it from happening, I will not have any work done on that arm including blood pressure cuffs, blood draws, any sort of tourniquet. I also need to be careful of repetitive tasks, etc. for the rest of my life. The lymph system is what allows that arm to circulate and drain - why would you doctor want to create extra problems with this system?
My two cents.
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Knitnpurl it seemed to me like removal of ALL of the lymph nodes seems a bit extreme. But I'm not and neither is anyone else on here a doctor (as far as I know). Maybe there are factors we don't know about. That said, NEVER be afraid to go to an Oncologist or Surgeon in a different group than the one your Onc or Surgeon practices in for a second opinion. It's quite easy to have your records sent to another doctor for review. Your Doctor should be OK with this. Once they remove those lymph nodes they can't put em back...so be your own advocate and have peace of mind and no lingering "what ifs".
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CarolinaAmy, I'm a lurker on this thread, but that was a terrific PSA. I could be sitting in that chair. I had no history, no idea. Thanks for sharing that. I will too.
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Tdaughter, yay for your mom's normal breast cancer! So happy for both of you that the outcome was better than expected. Sometimes the lesser of two evils is pretty good news.
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AnotherNYCGirl - I second your sentiments! There's so many newcomers, I'm having a hard time keeping up with everyone. I'm reading along though and sending many well wishes for all those in the thick of making treatment decisions, chemo and recovery. xo
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Hello ladies, this is my first time here
Im 27 years old, I was diagnosed on 07/03/15 with IDC TN stage I, with a family history of BC (grandmother and aunts), I never did a genetic study but I had yearly ultrasounds.
I am a 3rd year resident of Radiology and I was doing a rotation in breast imaging when I found the lump, that same day I made myself and ultrasound and I didnt like what I saw because I knew the signs of malignancy.I went from being the one doing the biopsies to be the patient, which wasnt easy.
Probably beeing familiarized with the medical environment specially on the subject of BC helped me with anxiety because I understood where was I standing, but at the same time knowing things caused me fear because you tent to think the worst. Fortunately I found it in a early stage.
I had conservative surgery and SLN and Im half way through chemo, Im having radioterapy as well as soon as the chemo ends and hopefully be back on my residency on April to finish my last year.,
It's only been 3 months but I feel is been like a year, it has been difficult to adapt myself to all the changes, not working (they give licence to miss this year) I had to move back with my parents, a breakup, being a patient and taking things calmly.
Thankfully my family and friends have been very supportive and loving making things easier for me.
Everyday is different some days are harder than others but mostly Im positive and calm and thankfull for all the blessings I have, ironic how when we're healthy we dont see them.
Just wanted to share my history
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Marianasm---oh my word! You have been through the wringer this year. I can only imagine how surreal it must be to be a radiology resident and performing an ultrasound on yourself that you could interpret. Ugh. I'm so glad you found it in an early stage and also glad that your residency program is working with you as you go through treatment.
So sorry that you have to be here but glad that you found us. I also have a feeling that this is going to make you a kick-ass radiologist. How comforting it would be, I think, to talk to a woman who has literally walked this path and truly does understand what it feels like and how overwhelming the choices can be. You will be amazing.
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Marianasm, welcome! I agree with CarolinaAmy, I am sure you will have great empathy with your patients as you have walked in their shoes. I am so glad to hear you say you are positive and calm, Hang in there!
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Hi lovely ladies,
I just wanted to drop in and send my love to you and let you know that I'm thinking of you all. We've just had a beautiful sunny long weekend here in Sydney and the air was thick with summer expectation. The nights were full of menopausal night sweats, which were far less lovely, but that's life!
Sweet dreams cocker, and to my friends in the U.S - I hope you all have a lovely day and make some great memories! I find they are great to fall back on during the tough moments.
Love Cass x
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Marianasm,
I can relate. I am the Director of a Radiology company. In my past life I was the manager of the Ultrasound dept and during this time I scanned patients as well.
I found my breast lump myself one evening lateJune. The clinics were not opened, so I went in and scanned myself (I had my husband with me for support). I knew as soon as I felt the mass that it was cancer, but seeing it on ultrasound was a whole different story. It was 3.2 cm and very lobulated with a necrotic center. I knew it was bad immediately and dropped to my knees in sheer panic and terror. Sobbing and shaking uncontrollably. Sometimes it is not great being in Medicine, but I agree with the other ladies. This whole journey has changed me. I see things from the patient perspective now. I know this will make you a much better radiologist. This will enable you to bring a different level of caring and compassion to your job. Not to mention what a great attitude you have, you have been through a lot.
Cindy
Ps this wknd I had pain in my left arm (where I had my chemo this round). I scanned myself and found a blood clot in my cephalic vein. Grrrrr. On blood thinners now.
Chemo-the gift that keeps on giving ;0(
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Cassylou, thinking of you too.
Murphy, I am trying to imagine how you were feeling doing those tests yourself...wow. I can only imagine how hard that was.((hugs))
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Hi all - I peruse this site a lot but don’t post very often. The love and support you all provide is amazing. You are all such an inspiration to me. THANK YOU ALL!
CAROLINA AMY – I am also in North Carolina (Raleigh area) and I just wanted to say THANK YOU for posting the powerful video about screening mammograms. It’s wonderful that you were able to be a part of such an important message. I was diagnosed with TNBC earlier this year at age 39. I found the large lump myself along with an enlarged axillary node. I was believed to be stage 2 at time of diagnosis and I went through chemo first with 6 courses of TAC. I don’t regret it because it gave us a lot of useful information as you’ll see below. It was believed to have shrunk my tumor significantly based upon imaging and clinical exam. I went through double mastectomy in July and it was discovered that my tumor area was much larger than originally thought and that I had a significant amount of nodes affected (15 of 21 that were removed). Because of this, I had a PET/CT which found 3 more nodes suspicious of cancer around my breast (one axilla, one sub-pectoral, and one internal mammary). That moved me to Stage 3C. Had the amount of residual disease not been found, we would not have done the PET and would not have pursued more chemo before radiation and the radiation field may not have been large enough. I would have gone about my merry way after radiation thinking everything was hunky dory and then likely ended up with mets in a few months. Even though it was NOT the news we wanted, my husband and I (and docs) try to see the positive in everything, and it could have been worse (distant mets). So, I immediately went back into warrior mode and started on a new chemo regimen (weekly Taxol/Carbo). I have my midpoint PET/CT next week (ack!). Also this week, I found out that my oncologist left (not her choice) and had to see a new doc this week. I think he will be good, but it certainly shakes things up a bit! I have a prior history of a fibroadenoma that I found myself a few years ago as well. I recall my doc at the time stating that the adenomas themselves do not evolve into cancer, and my next mammogram would not have to be until I turned 40. I don’t recall any mention that just having a fibroadenoma puts me at increased risk of breast cancer. Had I known then what I know now, I would have been more vigilant and pushed for yearly mammograms from that point. Maybe it would have caught my disease earlier. Since my diagnosis, I have learned of so many young women that have recently been diagnosed with breast cancer, many of them who find it themselves like I did, but also are at a later stage because of it. Many others, as in the video, are in their 40s and would also be subject to the same circumstances if mammograms are pushed back. I would love to share that video if you are OK with it.Even though on paper my situation looks non-favorable, I know that statistics are just statistics and I REFUSE to be the bad statistic. We all need to remember that. I had a doc tell me when I went for a 2nd opinion after my surgery that you are in a high risk situation but you are not in a 100% risk situation. Those words stuck with me. I have an 8 year old son that I want to enjoy now and of course want to see grow up! I also have a wonderful supportive husband that I want to spend my ‘golden years’ with. I believe there is a very strong mind-body connection and though we are all scared, no matter at what stage we are, it’s easy to go into the ‘black hole’; and cancer loves stress. I have such an amazing support system of family and friends which has been overwhelming; and of course now I have all of you! Though I do have my bad days, they are fewer and far between since I have changed my way of thinking and have sought out many resources to help keep me centered and grounded. It has made my life so much more enriched and enjoyable, even with the big C. Many years from now I hope to be able to provide hope and inspiration to others by saying that while it was the hardest thing I’ve ever had to do in my life, I beat the shit out of breast cancer! Thank you breastcancer.org for being here, and thank you to all who post here! Thanks for listening.
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Secondchance, I love your positive post! I am motivated and inspired by you, thank you!
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