Calling all TNs

willy5js5

Lauren- regarding forums for reconstruction, I found the picture forum especially helpful. The reconstruction thread is loaded with personal stories and photo journals of all types of reconstruction. Due to the intimate and private nature of the journies shared access is granted by the site administrator. To gain access, send a private message to nowheregirl and ask for access to the picture forum.  It may take a little while before you get the instructions to access it. The site administrator will follow your posts on here to evaluate your willingness to share and make sure and protect the safety and privacy of the women who have shared their stories.

I have had both permanent saline implant reconstruction and natural tissue reconstruction. My implants failed after time and I opted to go with muscle sparing DIEP reconstruction using belly fat to avoid the need of replacing implants down the road again. I found the DIEP 2012 and the NOLA in September threads helpful to guide me as I made my choice for that type.  You are spot on to become educated on the different types so you can make the best decision for you.  It really is a personal decision and ultimately you are the only one that has to live with your choice. Best wishes to you.

InspiredbyDolce

I know of a few ladies who are 30+ year survivors, and 1 of them is a TNBC survivor!

My approach has been different than some other approaches mentioned on here. 

While I certainly don't 'blame myself or think I caused it' per say, I have completely eliminated any items that I have found to warrant suspicion. For instance, I used to drink a lot of coffee, diet coke, never exercised, cleaned a lot with strong chemicals, and my vitamin D3 was extremely low, a 12 (found out after my bc diagnosis).  Since my dx, I have cut out 100% diet coke and coffee and replaced with organic green tea and water.  I have traded in the oreos for steamed veggies.  I have given up the 2 hours of nice couch time, and do my 90 minutes each day at the gym. While I have not particularly enjoyed all the changes, I do feel amazingly well, and I feel extremely healthy and I love my new body - I lost 22 pounds!  

I hear people say they "aren't changing anything, as that means they are letting cancer control them", but I again have a different mindset.  I feel if I were to not change anything, that I would be "naive to how I would be missing opportunities to remain healthy for a long time." 

I don't know what caused my cancer, but I feel I have to make a change to what I was doing before.  I have always felt about things in life, that, if something is not working, you must change some process.  I feel the same way about my environment and health. For some reason my body was not able to prevent me from getting cancer.  If I can try to isolate some potential items that negatively influenced my health, than I will have a better opportunity to succeed.

In the moment of writing this, I can say that today I have had a particularly challenging day.  I'm just 1 year out, and have fears like all of us do.  Some days the fears are stronger, some days they are almost not there.  But today they are here and real.  I think as we get further out, we are able to stand stronger, and perhaps make bigger assumptions.

But tonight as I write this, it is just to say at 1 year out things are challenging. I strongly advocate for each person to remain vigilante.  Be the best that you can be, allow yourself to have weak moments without feeling guilty, and try to improve any part of your lifestyle that you can.  Some changes can or may make a difference.  

I am wishing all of my bc sisters on here much love and hugs!

Hopex3

Inspired...Very well said. After my Dx in August, I made changes too driving my husband nuts. Then I fell off the wagon at Thanksgiving and have been trying to get back on ever since. I do have my BMX surgery next week and am slowly gearing up to take charge of my life. Reading your post is just what I need to hear so I thank you for that.

liv-

exactly what i feel, expressed well inspiredbyD.

x

Cocker_Spaniel

Inspired you wrote a great post.  I won't blame myself, what's the point, but it does leave me wondering at times not why me but why now. I have always been a well person (not fit, wont go too far lol) but I have kept pretty well through my life so maybe its God's way of saying Annie don't get too complacent cause you will be up here with me one day (at least I hope so cause the other option is not so great!).  Maybe it's now a gentle decline in my good health (despite the chemo) and I won't get run over by a bus which is quite good really cause as OBXK says they are unreliable lol. I don't think this for all of you as well, just my thoughts for me that pop into my head every now and again.  I want to laugh with my family, friends and you wonderful ladies on here for the rest of my days and just hope that there are many more days to come for me yet as I just do not want to leave this wonderful world.

God am I morbid or what.  Funny but these thoughts never went through my head until BC. Sorry for my ramblings, believe me most of me is sane, most of the time !!,  but for some reason they come every now and again now. 

Have a good laugh today until your tummy hurts and keep away from all the side effects of chemo if you can.  Love to all. Annie     

Cocker_Spaniel

Labour Pains

A married couple went to he hospital to have their baby delivered. Upon their arrival, the doctor said he had invented a new machine that would transfer a portion of the mother's labour pain to the father. He asked if they were willing to try it out. They were both very much in favour of it. The doctor set the pain transfer dial to 10% for starters, explaining that even 10% was probably more pain than the father had ever experienced before. But as the labour progressed, the husband felt fine and asked the doctor to go ahead and bump it up a notch. The doctor then adjusted the machine to 20% pain transfer. The husband was still feeling fine. The doctor checked the husband's blood pressure and was amazed at how well he was doing. At this point they decided to try for 50%. The husband continued to feel quite well. Since it was obviously helping out his wife considerably, the husband encouraged the doctor to transfer ALL the pain to him. The wife delivered a healthy baby with virtually no pain. She and her husband were ecstatic. When they got home, the mailman was lying dead on their porch.

liv-

thx cocker good one!

ladies have a look at this...just the voice makes me smile!

its a great day for me to whoop somebodies ass!

video>>   http://www.facebook.com/photo.php?v=297050401057&set=vb.508431057&type=2&theater

xx

NavyMom

Thanks for the morning laugh, liv!

Lauren15

Anita, thanks so much.  I will look into what you said.  I'm also going to start emailing my PS, since he said I could, and is a friend of a friend with one of the best reputations in S. Florida (whew).  I want to find the surgery that is the closest to perfect, and when I say perfect I don't mean natural (since natural from some pictures I've seen are scary).  I want to be perky and pleasing again (like my 20 year old daughter - yeah right). . . I can only dream.  Any way, I will look into the procedure that gives me the best results to be normal again.  thanks again!!!!

Luah

Titan, quite right. Technically speaking, breast cancer (ALL types, not just TN) is one of those cancers that cannot be cured in an absolute way. When docs talk about "cure," what they really mean is "successful treatment and no evidence of disease." However, because BC is invasive, there is always a chance (and thankfully for most, a remote chance) that it will recur...  

That said, 3 years out is a big milestone for TN and 5-6 years even more so. I don't think of myself as cured or in remission. When people ask, I am thankful to report I am doing well.   

Have a great day, ladies.

PS The TN book that someone asked about earlier is no doubt a good read. I have always followed the author's blog and have found it very helpful. 

Lauren15

Need help ladies.  My DH and DD will never read the triple negative book that s/b delivered tomorrow.  He doesn't get it.  He said to me earlier today after trying to explain to him numerous times about TNC - why don't they just cut it out and then you don't have it any longer?  Do any of you have an article that you would recommend they read?  The ones I saw sounded like doom and gloom.  I want the fact, just the facts.  Haha.  Thanks!

Lauren15

Genetic Testing question:  I heard back from Utah today that they are running the BRCA tests - there are three different things they look for - $575 - Aetna approved.  However, Aetna did not approve the other part of the test that is $3,000 due to my age and no family history.  I'm thinking I don't really need it.  My doctor is on vacation, and the nurse said she was going to look into ways to get grants, etc. - Anyone have any advice?  I'm all ears!

Lauren15

My third question - wow, I guess my chemo head is defogging.  Does anyone go on the Triple Negative Foundation site.  It's very similar to this.  It looks like there are daily updates on anything new, etc.  -- I don't want to do overkills, but I wanted opinions on anyone who is familiar with both and knows the differences.  thanks again ladies.

SherylB

Lauren,

How about this synopsis. Most tumors respond to hormones, ER, PR, and Her/2. So the treatment of giving chemo that blocks the hormones is chosesn. Even if they cut it out there could be microscopic cells that traveled through the blood stream and wound up in other organs. Regular cells don't go outside the organ they are making up, (ie. liver cells stay in liver and so on) but cancer cells act differently and they can travel anywhere in the body. So chemo which treats/attacks the whole body can kill any cells that got out.

Now TN has no hormones so there is no specific treatment of chemo to block the cancer cells. So doctors decide which chemo is the most aggressive for the patient based on all the other markers, such as grade, stage, aggressiveness (Ki-67). They then give the chemo to catch those sneaky cancer cells that may have gone elsewhere. Then if you didn't have a mastectomy but had a lumpectomy (breast sparing surgery) radiation will be done to try and get any other sneaky cells that may be out there.

Be sure to mention that with aggressive treatment if a person can make it 5 years with no recurrence then the chances of getting it back, go down for TN more so than other cancers. May not want to say this as then it becomes a watch and wait game for the calendar to pass and life may get forgotten in the mean time.

This is what I have figured out based on my reading that kinda simplifies it in a nutshell for me. I may not even be correct but think I am on target.

Hang tough, Sheryl

SherylB

Lauren, I have been to the TNFoundation, Susan G Komen, Scott Hamilton and others, but have found this to be the most active and with a wide wealth of experience and knowledge, as well as support. So I pretty much stay here and read all  the forums.

Sheryl

Titan

Lauren...first of all..stay with the websites like this and the ones you mentioned above...the media and some websites are nothing but gloom and doom about tnbc...stick with the websites that post studies and have facts..not freaking horror stories...you can scare yourself ***less...It is true..that tn..if it is going to reoccur is usually in the first few years after treatment...then our chances of reocurrence DOES go down,..way down...of course we have to realize that any one of us could be in that lower percentage......but it really does get easier after time...right now I'm going for that 4 year mark...(3/20)..then pushing for that 4 1/2 year...then the big 5 year....yeah..still very vigilant...yeah..still freaking about a pain if I have one...but....I dunno..I feel really good right now....things are pretty much back to normal.....if there is such a thing....time really does help....when you are going through treatments everything is about YOU..and it should be....after treatment is over and time has passed..it's like..oh..it's not about ME anymore...I can start caring about other things now....weird transition..but it does happen....good luck to you and all the ladies going through treatments right now...it is all about YOU..and don't forget that....

Loafer

Hi ladies -



Interested in hearing about women who change their life style and those that don't after being diagnosed with TNB. Does it really reduce the rate of recurrence if you make serious changes to lifestyle? What about women who were in great shape, exercised, ate well and still got TNB?



I went into this very healthy - can't remember the last time I had a cold - haven't missed work since i delivered my last child. I've always eaten a well balanced diet with plent of fruits and veggies - no fast food, soda etc. and I exercise moderately. I really don't believe giving up a daily cup of coffee, cheese and chocolate will make much difference - other than making me grumpy. Can I exercise more often - sure - but I would do this to make myself feel better and more energetic.



What are your thoughts?

liv-

hi loafer - for me im pretty extreme at everything i do, either all or nothing.  can pig out and go off the rails but the outcome is always a disaster, weight gain, lethargic, depressed.

finally i seem to have a handle on it and believe everything in moderation, i still have a glass of wine, still drink coffee, and by the way they are now saying that we must have 2 coffees a day as its very beneficial to health..last decade it was to cut out coffee.

when i feel my best is when i basically stick to healthy eating and lots of exercise and if thats  a contributing factor for stopping progression then thats a bonus.

so for me  90% good, will still have a chocolate if i want but dont seem to want anymore, food doesnt have to be all organic, still have meat, very lean no fat and loads of vegetables and still go out with my friends and drink and have fun at least once a week.

definitely feel better exercising and eating healthy, mentally and physically.

xx

natL12

Loafer - when I read "how to prevent..." in the women's magazines, I just smile.  Eat right (veggies, fruits, whole grains, low fat, etc.), exercise (3-4 times a week high intensity aerobics, walking half-marathons, etc.), no smoking, little alcohol (1 glass per evening).

So, 4 years ago I had open heart surgery for leaky valves (3 of them) and went back to the healthy lifestyle as soon as I could.

Now it's TN breast cancer, and I'm trying to get back to the healthy lifestyle again. (Getting back to the exercise is the hard part.)

The magazine articles never mention choosing your ancestors more carefully.

Don't let others make you feel guilty about what you've done in the past, or make you feel it's YOUR FAULT that you have cancer. Just do the best you can with the hand you've been dealt.

Nat

liv-

lol nat - The magazine articles never mention choosing your ancestors more carefully.

too true!!

xx

Sandlake

Hi Loafer ~ Lately lifestyle is all I can think about, now that I'm through with treatment.  I feel if I don't change something it's going to come back again.  Is it the water I drink? Is it my brca2 mutation? Is it the glass of wine I have each day? etc etc!!  I do eat good, walk 2 miles at least 4 times a week.  I am trying to live my life again but it is hard finding the new me.

liv- you are so right about everything in moderation! Do you take any vitamins or supplements?   

Luah

nat - so true - wise words indeed.

sandlake: I was just like you, pretty obsessed with diet, exercise and supplements up until about 2 years out. I'm less anxious now, though I still try to exercise regularly and eat healthy - this just makes sense for a whole lot of reasons.  

Lauren, how about this: BC is invasive - that means cancer cells can spread throughout the body. Surgery will remove a tumour in the breast, and radiation will zap lingering cells in the breast region, but only systemic therapy can kill cancer cells that may be circulating or trying to set up residence in an organ or in your bones. TN, specifically, does not respond to hormone therapy (taking a pill every day); therefore chemotherapy is the only systemic therapy that works on us.... and it's an important treatment for TNs to do (unless the tumour is extremely small) as this form of BC is also known to be very aggressive. (Still, it's not a magic bullet, and sometimes cancer does return.)

netty46

Minxie during your first treatment did they not scan you tooo see if chemo was working? shrinking the cancer? Or you had lumpectomy first?  I use to wonder why chemo first but actualy its a good thing because the docs know if it works on the patient.  (complete pathological response).  Did you get 25 radiation hits this time?

netty46

My doc just told me that in the Conference on December 2012 In San Antonio Texas they have discovered there is a subtype to this TN.  The ones that just go on for years way past 10 and then recur but no signs of metastisis then the ones that recur quickly and spread.  This could be the key to a cure if they find out what the new subtype has.

minxie

Netty, my first tumor was 1.2 cm, kind of small, so they did lumpectomy then chemo. This was in 2008/09. In 2009 they found DCIS and I had a BMX. Then 3 years after the BMX I found a 1 cm lump that was a local recurrence. This time they took apart the reconstructed breast, took out the lump and a lot of tissue, and did 25 rads. I had done 5 rads right before BMX when we didn't know about the DCIS yet. As soon as DCIS was found we stopped rads and moved to MX surgery. Yes, a long confusing story. On Monday I get a new TE put in, so I can get my implant back this spring.

netty46

hi minxie i pm you.

SunnyCoconut

Hi - Just checking in to see how everyone is doing!  Also, I have some good news - I just passed my 3 year mark!  My bone scan and CT scan show no local or distant recurrence!  (I'm still afraid to exhale - shh!)  Take care of you!!

liv-

fantastic news sunny - another 100 coming up.

congratulations!!

xx

jenjenl

Congrats Sunny - enjoy and celebrate

Loafer

Congrats Sunny!!! My onc says 3 years is the critical milestone for TN!! Awesome news and thanks for sharing!