Calling all TNs

Stace02 - I too do not have any follow up scans, blood work, etc.  I am a year out from having TNBC with a double mastectomy and reconstruction.  I was also told unless I have any complaints for a two week stretch there is nothing they can scan for.  They feel with the chemo and the lack of real breast tissue if it spread somewhere else they wouldn't know until I complained about some pain somewhere.  I understand their logic but am not comfortable with it.  You have to know your own body but with reconstruction you have to understand there is a whole different normalcy you are not familiar with so with every twitch and pull from the reconstruction I think it's the worse.  I have been to all three doctors, breast surgeon, plastic surgeon and oncologist and they all told me what I am feeling is my normalcy.  Hard to understand but it is what it is.

I do know our doctors have our best interest at heart and I have to believe what they tell me.  I live in the Boston area and go to Dana Farber and Brigham Womens and feel I am in the best hands and I don't question what they say.

Great Idea! 

Pat; Age 66 Diagnosed Nov. 2013 with Paget's  Disease. After biopsies, found small tumor less than 2cm which turned out to be TN. Had single mastectomy April 15, 2014. No Dr. was in too much hurry to get on with this surgery and I was permitted to visit  my son in Hawaii  for the winter. Now I am just finding out that TN is a fast growing aggressive cancer, and will be seeing an oncologist at the end of this week. Am not a fan of chemo, and depending on the statistics, may opt out of any recommendation for this course of treatment. Anyone else decide to forego radiation and chemo? I've made lifestyle changes promptly after being diagnosed , like daily juicing, Beta Glucan, Laetrile, Modified Citrus Pectin, Transfer Factor, D3, Liposomal Vit. C, Grape Seed Exract, etc. Hoping this regimen will get me out of this mess too. I figure, since the surgery got the Paget cells and the small tumor, what exactly is the chemo or rad targeting? Any rogue cells that traveled could be taken care of using the Citrus Pectin and Cimetidimine( Tagamet). Why poison my whole system at this point? Anyone else feel this way?

Welcome Seal and Stace! You will find a wealth of info and support here. Seal, I have a friend who is a doctor who did approach me with the regime you are following now, he is vegan, knows all the current natural cancer strategies. But my cancer is particularly aggressive, and I knew if I did not go conventional treatments I would not kick it. It took everything medicine has to offer to get my cancer out of my body, and I have no regrets for using chemo and radiation to kill it. Yes you are poisoning your body, yes there are nasty side effects. Yes, I am cancer free, no evidence of disease, or NED as we like to call it. If I did not go this route and could not kick it with natural ways I would have always regretted letting cancer grow when I could have used stronger means to fight it.

But that was my personal choice as yours is for you, and we all must use our inner voice. Researching information has become so much easier with the internet. Stay with us here, keep us informed on what and how you are doing. 

Stace, I finished treatment April 7, I will have a scan in 3 months. Again IBC is my diagnosis, it is aggressive, takes aggressive means to kick. My reoccurance rate is high for first 5 years, then really drops and is not so common after that,m so I will be followed up on closely until I get to that milestone. I would want a scan at some point, I think you should have one at some point just for peace of mind. Stay positive and do not let fear get you.     Meadow

Hi Placid44 - I am not sure of the terms without looking at my path reports - IN 2004-5 I think it was Invasive Ductal Carcinoma stage 2 - my tumor was larger than anticipated at first so chemo and rads - the first round of chemo I think was cytoxyn and something else - in April 2013 TNBC with chemo - cytoxyn and taxotere.   I was allergic to the taxotere so they had to desensitize me to it because it was my only choice for the TNBC and would give me a better chance of getting rid of the chemo.  I am not sure I would agree with others forgoing chemo but those are personal decisions.

Hello Everyone!! I see some familiar ladies still here and many new ones.  Titan, Annie, Fighter, Luah and others, you might remember me.  I am very sorry for not checking in for many months now.  I am still doing well and in fact this coming August, I will be 4 years out.  The last mammogram went well, nothing to report.  I haven't done an MRI for several years now.  I have tired to forget this experience, although it can never be forgotten.  But I might admit that I have a psychological issue with it, maybe that is why I don't visit this site often.  Fighter - I am so sorry to hear of your recurrence. Actually, I could not believe it.  I remember we were diagnosed around the same time, or maybe you were just a little earlier than me.  Due to my eye problems which continues till today, I am not reading much, therefore, cannot catch up with all the posts, but am hoping that there were no other shocking things happen in my absence.  If we lost anyone, please do tell me.  Wishing each and everyone of you a bearable journey wherever you are at, and am hoping that me being alive 4 years after diagnosis gives you some hope and inspiration.  Lots of Love and Hugs to each and everyone of you!

Well ladies have you ever seen one this size (I'm talking about a tater you goofs lol)

Thank you dear Annie for the lovely welcome, I have missed you girl.  And thanks so much for filling me in on the news about losing our two very lovely friends.  I was tuned in when Karen (OBXK) passed but was not aware of Michelle's passing.  That is a huge big shock, trying to hold back my tears.  It is not fair.  Annie, so sorry to hear that you also had an effect of chemo on your eyes.  You know my eyes were troubling me so much that I went ahead and retired from my government job at age 56, last December.  I didn't mention to anyone at work that it was because of my eyes that I was leaving.  I just pretended that it was my age and time to leave as pension was waiting for me.  But in reality I was suffering not being able to do my job anymore due to my eyes not behaving with the computer screen all day.  It was all for the best anyway.

All you ladies, get better quickly, look forward to life and retirement, because retirement is great, it is awesome, you get to go in the sun during the day, you get to sleep in your warm bed longer and smell the roses outside.  God is giving me this chance of a lifetime right now.  While the retirement budget is very tight, it is awesome that I am able to do within that, and feel contented 100%.  So thankful to God, I thank him a ton of times each day, for everything that he has given me.  Imagine this - would I have thanked him like this in 2010 when I was diagnosed, and then the awful surgeries and during treatment?  No, I was in a different world back then.  So there is an awesome life waiting for you all, ladies, trust me, these bad days will be over, it is definitely not the end.

Annie, honey, I still have one more year to go so I am keeping my fingers crossed.  I am also counting my days from the date of surgery when the crap was taken out of me, which is August, 2010.  I know for sure that it was out of my body after the surgery and that chemo was just for extra precaution.  Recently, my doctor cousin and his wife visited me from Sydney, found out she also had BC in 2010 round about the time I had.  Shocking, it is all over the world, not leaving any continent alone.

Best wishes toyou all lovely ladies.  May God give you strength and hope.  Sending you love and best wishes!

Yep...I'm still here!  I have appointment with PS today and then will graduate to every 2 or 3 years.  Seeing my MO in 2 weeks and then she will be releasing me to my PCP!  She does want me to have a final  PET scan.  I have agreed to it and at this point just want to get it over with.  Just waiting for Insurance to approve it.  

Annie, you have such a great memory for who pops in here.  My memory isn't worth a nickel.  Scares me sometimes.  I write myself alot of notes and reminders and lists!   Temporarily lost my safe deposit box keys last week.  Amazing how much crap you can find while you are looking for something else.  I used a lot of bad language that day, too!!!!

My heart breaks when I see so many new ladies here.  Hang in there, girls.  Things will get better.

Love and hugs to all.

Haven't been to this forum since before all my doctor visits in April. I worried about the mammo, but everything was normal. 2 years down the road since the diagnosis.

Did a half-marathon (walked it) last Saturday. First one I've done since the chemo took the starch out of me. Just a little bit slower than I used to be. Felt good about that, and got LOTS of support from my friends and family when I posted my finishing picture on Facebook. So I'm changing my picture here to the half-marathon picture. Shows off my improved health.

Hope all you folks see improvement every day...good wishes to you all.

great news GuyGirl.

Cocker and Lovelyface - just curious about your eye issues.  When I am out walking the dog my eyes just water up and tears come strolling down and my nose starts running.  I chock this up to not having heavy eyelashes or nose hair anymore from the chemo but my eyesight seems to be going downhill as well - need to get to the eye doctor to check. 

I have been noticing changes in my eyesight also...quite rapidly.  It is a question I intend to ask my MO about.  It is a little comforting to know that I am not alone in this.  But geez, what's next?

wishing you all well,  lilyrose

Lily,

I had eyesight issues during A/C, but I have been fine since finishing chemo.  Hoping it resolves for you all...

I'm part of "the old ladie eyes" club! My eye sight became worse during chemo, but I waited 6 months to get them tested and new glasses. I also had a lot of problems with styes during chemo. I have noticed that my eyes are always red-even after waking up. I use to have nice white pupils and now they look irritated, has anyone else noticed this with their eyes? 

TifJ - My eyes went after my first round of chemo in 2005 when I was 45 and I had to brake down and get prescription glasses.  I will be 55 this month and I feel like my eyes have really really gone down hill after last years round of chemo and yes it's age as well as the chemo

KSteve welcome to the eye club  - there are more of us than I would have thought!  I thought it was just me.

LilyRose - I think we have been tested to the limit and put our time in.  All good things are next!!!