Calling all TNs
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thanks again girls! I edited my post to add pic above. Love love love my sisters! Awesome ladies they are. We just need to help the big sister through this. I like how yiu said no to everything cocker, that would be like my sister probably. I will share the good results with her. THat was helpful. I will talk to her tomorrow prob.
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I had chemo before BMX, expanders, radiation, and exchange to cohesive gel implants. I'm quite happy w the look, especially in clothes. No sensation, which is difficult. I got Vinnie Myers nipple tattoos and they look very real. I found the expanders placement painful, but manageable with painkillers and worth it Best of luck to her.
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CarolineAmy - i'm such a dope i thought it was this past Friday!
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Hi! Thank you all for the prayers and positive vibes - I could feel it! 😊 While I wish I could say that my scan was all clear, it wasn't, but it could have been much worse. Radiation seemed to do well on the cancer side, with just a couple of areas we'll need to watch as it wasn't clear if the mild uptake was due to post rad inflammation or not. The biggest surprise was a new axillary lymph node found on the contra lateral side. So, looks like more surgery and radiation at the very least. My onc believes that cancer had been there for a while due the location of the tumor, and that chemo had kept it subdued, but now that I'm 5 months out from chemo, it has the opportunity to grow. I look at it the same as I did with the PET results after surgery that found 3 nodes active for cancer that were not known before surgery, and thus not in the surgical field. If we hadn't found them, I would have gone about my business thinking everything was OK, then would have distant mets soon after. This allows us to address it before it has a chance to do more harm. I'm keeping the positive thoughts going! I'm so thankful that there are no distant mets, especially considering the aggressiveness of this cancer and that I've been dealing with it for over a year now.
It's so frustrating when you are fighting so hard to just get knocked down again. But, it's time to get back up again, put my fighting gloves back on and start swinging! 💪🏻
Cocker - I had surgery which removed 21 nodes, but PET found a deep axillary node that was not part of the bunch that were removed, as well as a sub-pectoral and internal mammary node that were all positive for cancer. So, I went into radiation with those positive nodes, and they hit me extremely hard in those areas to make sure to eradicate the cancer in those nodes, in addition to total breast radiation.
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Lisa, Your sister is so lucky to have you. It is hard to be support for someone who is down in spirit when you love them so, isn't it? She has been thru so much already. I would think if she is very motivated, she can return before the end of the year, I am wondering if she can return half days at first? Then transition to full days? I sub teach that age group frequently, I just think back to my own recovery, and as I substitute teach, I was able to just take that time off, but if I had to return or wanted to return after 6 weeks, I could have. There just isn't a lot of school time left before the years' end. Because of her good fitness, not overweight, etc, she will recover fast, I think. The first few weeks are tough, with the drains etc....you remember. Is she thinking about recon like a one step procedure, with implants? My heart goes out to her. But please tell her for me that she can do this!
Arlene, hugs to you for tomorrow. Hoping you have a very successful surgery. In your pocket for tomorrow!
Those puppies...the warm my heart!
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Secondchance....poo. Thank you so much for the update. I am sorry you did not get the all clear....this time. But youwill. Just will take a bit more treatment. Does your team think any more chemo is needed? Hang in there!
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Cocker...thank you so much for your understanding and encouraging words. It's so wonderful to have so many shoulders to cry on here. And, smiles when things are good. Just so happy I found this site. Today I was talking to a male friend, telling him how women always come together offering support and strength. I think he was jealous he wasn't a woman. LOL
Second Chance...wish your scan had been perfect. But, there's always next time. ❤️
To Everyone...we need to stay positive, focused and forge ahead.
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Thank you, Meadow! I am calm and all ready for tomorrow.
Sending hugs to all, thanks for being here!
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Missed you Another!
Cocker, glad you are feeling a wee bit better. Still hurting I know.
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greenae will be thinking of you tomorrow. Had to laugh at your earlier post, so glad you look normal in clothes.
Lisa your sisters and you are so beautiful. Have some faith, your beloved girl will start fighting soon.
Cathytoo I think most women understand each other through tough and stressful times and those that don't are hardly worth a thought. Big hugs to you that you find peace soon after losing your husband. That beautiful little girl will help you.
Secondchance I can so understand your frustration. Cancer really does suck the way it creeps in. Hopefully this further surgery will help resolve it once and for all. As mine was microcalcifications and lots of them I often wonder how long the devils have been growing but suppose I will never know. Big hugs to you my friend.
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Have been having some issues logging into this site...the site works well in my Mac but in Windows environment, a pop up malware comes up every time I log in. Will check once again in a day or two. Have anyone else experienced this issue in the last few days?
Extremely sad to hear about Kath! Yes, this news took me back to the recurrence/ mets scare, the moment I read it. And each time someone passes away of cancer, a part of me sinks.
Cathy and everyone else... I have noticed something. TNBC follows after years of personal crisis... Is there a link?? A particular site does mention a link between stress exposure/ exposure to social isolation and alteration of breast cells leading to TNBC.
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BAN I think there is a connection with stress and breast cancer. Most of the ladies on the earlier sites had, had some stress in their lives and sometimes you don't always recognise what you are going through as stress. I feel it alters your immune system in some way. Only my theory though.
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secondchance, thinking of you!
a slight bump in the road but you'll get through it! cathytoo, sending hugs too. I fall into the same spiral as well when I hear bad news like this. I can't get that feeling out of my mind for a bit but it does go away if I preoccupy myself. anything can trigger it and it drives me crazy! but we're all here for each other to vent and rant and cry!
lisa, i can't give any recomendations since my treatment was totally different but thoughts and prayers for your sister and family to get through this as quickly as possible! you're all beautiful!
Ban, 100% think there is. I know I've told my story a little on here but was 34, the sole caregiver of my mother with dementia, working full time. A year prior I picked up my mother and all our things and moved to Florida for my dream company. The stress of moving and dealing with things with my mother without any family or friends around I think did a serious number on me. Mom is now in an assisted living memory care facility which has helped my stress a bit but I'm still stressed. hopefully not as much as before though. But do I think all of this caused TNBC? Yes, without a doubt.
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BanR...It's so interesting that you mention a link between stress and TNBC. I never had a bad mammogram but I found a lump seven months after my husband died. When it was confirmed to be malignant, the radiologist asked if I had suffered a big stress recently. I told him my husband had died seven months earlier. He said so many women develop breast cancer after a huge stress like that. But, you mention a link between stress and TNBC specifically. That's pretty depressing news.
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So very interesting the concept between stress and cancer. in October 2010, I started the worst job of my life. Stress over the top! Not to long after starting the job from hell, I started finding lumps and bumps. Benign at the time... Then my son, ugh... my greatest joy and greatest sorrow wrapped together... really started to test me in ways that are not good. Stress thru the roof! Diagnosed December 2013.... My MO has told me over and over and over... NO STRESS! So easy to type... so hard to practice!!! But I have been giving it my best effort. And when the job from hell starts to get to me... I remind myself, not worth dying for... but so very, very interesting....
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Arlene, - wishing you an easy time today and a speedy recovery!
Secondchance, - this time you'll get rid of it all! as they say, - "second time's the charm"!
Lisa, - great photo!
Hope all here are having a GOOD day!
Hugs from NYC!
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I totally agree with the connection between stress & TNBC. When my 32 year old daughter was diagnosed out of the blue, with Stage IV IBC in 2012, I started riding the stress roller-coaster. Through ups and downs, great scans, and bad scans, etc. When it progressed to her liver, and got really serious in the last few months, it became relentless. I guess now I shouldn't have been surprised at my own diagnosis 2 months after she passed away. Knowing what I know now, it seems inevitable. Maybe that's why BC seems to run in some families absent of any gene mutations?
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WannaCruize...so sorry about your daughter. It's something no mother should face. And, now you are fighting your own battle.
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ACT vs TC...I know that ACT is the protocol for TN more often than TC. And, yet I see many here are getting TC...myself included. Does anyone have information on why one would be recommended over the other. I know CMF is still being used also, but not so often. One oncologist I saw wanted ACT, but I went with the doctor would felt TC didn't present as many risks after treatment. I try not to make myself second guess my decision
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Re peripheral neuropathy. I started alpha lipoic acid after a new onc said some of his patients have had some lessening of their neuropathy using it. I started taking it right away at 200 mg a day. After 2 months I started to feel a tingling in my feet, which is supposedly an improvement over my previous numb feet. I'm going to continue taking it. Now that I've read Bluedog's post, I may increase the dosage to see if I have more progress on that dose.
I am very interested in research in this area since my neuropathy really affects my balance to the point I've had several bad falls. Luckily, I had enough fat on my hips that I didn't break anything! This is the only plus in being senior and a bit overweight ):
Hugs,
Peggy
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Lisa - I'm so very sorry to hear about your sister. She's incredibly lucky to have you. I honestly didn't think BMX and recon was all that bad. However, they started me off with just Norco in the hospital after waking up, which just didn't cut it for me. I asked for something stronger so they gave me Percocet which worked much better. I was still having breakthrough pain, so they ended up giving me full blown Oxycodone for those times. The first few days at home I was taking a Percocet every 4 hours and an Oxycodone every 4 hours...so basically a pain pill every 2 hours. Once I was on this regimen and my pain was under control, it was much easier. I feel I healed quicker as well, as I was able to be more relaxed and in better spirits. I switched over to Ibuprofen about 7-8 days post surgery and only needed a Percocet every few days if I overdid it. In my experience, there's no reason to have to tough out any major amount of pain after surgery. As far as reconstruction, I'm 5'0" and was a DD prior to dx. I went down to a B and am THRILLED with my smaller size. No doubling up on sports bras to exercise or holding them when I run up and down the stairs.
I look fine in clothes, but I've got some sunken in areas just above my breasts that need fat grafting. I'm not yet ready for more surgery, but at some point I'll have to bite the bullet and go back for that. After the fat grafting I'll have nipple tattoos. Regardless of BRCA status, I would choose a BMX again no questions. Just my personal preference, as I wouldn't want to deal with mammos and further scanxiety. As someone pointed out before me, radiated skin isn't as easy to reconstruct, and so I think this is where you can run into some issues. I did chemo first, but 5 weeks is longer than I'd be willing to wait for an SNB. I was 3 weeks from dx to SNB and then another 2 weeks when they thought it had metastasized to my sternum waiting on testing and such. No one was happy about the 5 week wait to start chemo. My BS was pushing results hard to get me in the chair asap. Again, I'm so very sorry for your sister's dx. Sending you all lots of love and prayers. Secondchance - I wish your scan brought better news, but I'm glad your major organs are clear and your onc seems to have a good handle on things. Sending you lots of love and prayers as well.
WannaCruiz - My heart goes out to you. I'm so sorry for the loss of your daughter and now your own battle.
Interesting convo about stress and TNBC. Lord knows I was under some stress the few years prior to dx.
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Man, I stress all the time! I feel like I'm doomed and will eventually get mets because of the stress! Ugh, sorry to be negative. My stomach has been in knots and my IBS has been flaring the last couple of days. A friend telling me her ex daughter in law's mom died of C Diff last night isn't helping either. She didn't mean anything by it but some of you know I have major PTSD from C Diff!
Anyway, Arlene I hope your surgery went well.
WannaCruize, I'm so sorry to hear about your daughter and now your diagnosis! My heart goes out to you.
Secondchance ditto everyone's thoughts about your scans. I'll be praying for you and everyone else here
(((((HUGS))))) everyone!
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Cathytoo, I chose the TC rather than the big A. My oncologist told me that 6 rounds of it compares pretty close to the ACT without the harsher side effects. I am hoping that changes in my diet and lifestyle will prevent this beast from returning. I completed round 5 of TClast week and have my last one on the 31st followed by 30 rounds of radiation. Excited to see some type of end in sight, but also nervous.
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Thanks everyone for the kind thoughts. I think I'll look into guided meditation and other options for stress-reduction going forward, don't want my body to take my stress levels as a sign to have this crap come back...
My MO recommended TC instead of ACT for several reasons: I had one single tumor, stage 1, no node involvement and elected for BMX. He did say 6 rounds instead of 4. Didn't want to risk affecting the heart.
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Thank you all for your kind words.
Interesting topic about stress TNBC. I believe there is a connection and that stress contributed to my situation. I was under an immense amount of stress at work in 2014 not long before I was diagnosed. It's difficult to eliminate all stress in our lives...but we can learn better ways to deal with it. I am doing just that.
Here's to peace, calm and relaxation for us all! Hugs!
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thank u, another, i am home and feeling hood! Love NYU and my docs!
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greenae so glad you are home and are feeling good. I love all my doc's as well and I have great faith in them. Rest up now and forget about spin classes for a while. xxxx
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I wouldn't be surprised by a connection between TNBC and extreme stress. The last few years before my diagnosis were EXTREME as far as stress goes. Of course, the entire year of diagnosis was horrific--my MIL (whom I loved dearly) died unexpectedly, the hosting and unsuccessful adoption of another daughter, one daughter who shared info about an incident where someone molested her, and my sister being diagnosed with colon cancer weeks after I was diagnosed. Total suckage.
I'm still going forward with the BMX and reconstruction Friday despite the studies I found. I have to trust my surgeons and oncologists who still think radiation would not be recommended as long as the nodes were clear with no evidence of past involvement. Please pray that I get a pCR, which would go a long way to bringing me peace with this plan.
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CarolineAmy that is a whole lot of stress and anxiety that you have had to deal with and I am so sorry you had to cope with it all. Life is just not fair at times. I can only imagine what you went through and that would be nowhere near your suffering. Don't read the studies, they are not always correct and have faith in your surgeons and oncologist that they will do their very best for you. I will be praying that all goes well and that you get a pCR. Lots of love to you my friend. xxooxx
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Carolina...So sorry for what you have gone through. It seems that so many of us have had incredible stress and loses. Obviously, our bodies react. I hope all will go smoothly for you. Trust your medical professionals.
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