Calling all TNs

BernieEllen

  Worked it out

I don't visit often so a late hello again to everyone.  I am a member of the Harley Owners Group and this year in conjunction with two other bike clubs they are promoting a Boobs and Balls across Ireland event to raise funds for a Cancer Solace Centre in the south east of Ireland.  This site is now on Facebook.  One of the ladies from a bike club, Barbara, died earlier this year from BC.  When i found my lump i immediately thought of her and straight to the doctors.  We need the awareness to keep people educated and to push for more funding.  Pink, purple, walks, runs - whateever it takes ladies. 

Luah

Titan, so great you are doing that run. It sure hits close to home. Good luck.

Gilly: Like you, I felt perfectly fine when I found the lump. Healthy, etc. I can't say I was shocked though, as my sister had been diagnosed 1 1/2 years before.

alexanjb

I was totally shocked.  No family history whatsoever.  Even after I found the lump, I thought it was something else, and so did my doctors right up until the biopsy results.  I had been feeling very tired but that is is.

Suze35

MBJ - thank you. You are right of course! I'm giving it the "2-week rule" and if I still feel uncomfortable with it, I'll get some scans. Now I just need the sun! We are having rain the whole week here, great for the garden, but blech! It reminds me of June 2009 - we literally had 4 days of sun the whole month!

Titan - I hear ya. I think awareness has reached an all-time high, but not about the right things. Most people I've run into in my daily life feel this is very treatable, they don't understand the fear that we live with for the rest of our lives. I want at worst, more effective treatments for ALL stages, and while we are at it, a cure would be nice! I love that you are running for that reason (I wish I could run but I have sesamoid fractures in both feet, so not easy to do). You'll have to run on over to MA to visit one day - I love it here! I lived in MI for 5 years, and have visited OH several times, it is pretty there too. But I really feel like I am "home" with all the history, seasons, big city...sigh, I'm besotted even 6 years later.

Alex - no family history for me either. If you had asked me before this what I would die from, cancer wouldn't have even made the list.

When I was diagnosed, I was actually in the best shape of my life. I had lost 15 pounds, was working out daily, and doing great. Then, well, at least losing the weight probably helped me find the lump. What IS weird is that 2 years previously, I went through the medical gauntlet thinking I had MS...tired, dizzy, neuropathy, feeling like crap...

Luah

You know that's interesting Suze. About 1 1/2 years before my sister was diagnosed, she caught some virus, never really knew what it was, but it threw her for a loop. She felt really crumby for a few weeks, even lost some hair. By some rough calculations, she traces the growth in her tumour back to that time. I know there is research going on on the relationship (if any) between viruses and breast cancer... maybe there's some hiccup in the immune system that allows cell growth to accelerate, who knows?  My own (humble) theory is that there are probably many cancer triggers and if you're unlucky enough to have several come together with sufficient potency at the same time, whammo.

alexanjb

Luah-I would like to know more about the research between viuruses and breast cancer.  I am going to see what I can find out.  I have lived with the herpes virus since I was 2 years old.  I get it on the right side of my face and usually on the eyelids of the right eye.  My BC was also on the right.  The herpes has been mostly controlled in the last 20 years by taking a maintenance dose of an anti-viral medication.  I still get a flare now and then and have to up my dose to a therapeutic dose.  In fact, I think I am fighting it right now.  After having it for 52 years I know all the signs.

Suze35-BC or any cancer  would not have made my list of things I thought I would die of either.  There is a lot of diabetes and heart disease in my family.  No cancer.  I am still determined NOT to die of cancer....at any age, just on principal.

Titan-you hit the nail on the head with saying "Most people I've run into in my daily life feel this is very treatable, they don't understand the fear that we live with for the rest of our lives."  Awareness is great, but too many people make light of this terrible disease.  There has been a lot of rah rah and over-pinkness that has trivialized this disease in many eyes.  Humor is great too.  But BC is not humorous or trivial.  People are still dying from it.  It is not just "Save the boobies"  It is save YOU and ME.  

epgnyc

LRM216 and Titan and all the rest.  Thanks for welcoming me here.  I have a feeling I'll be needing your words of wisdom and comfort in the coming weeks.  I started chemo with a bang on Apr. 21 and within 7 days I ended up in the hospital for 3 days with a fever and a zero white blood count.  Because of that they have cut my chemo dosage by 20%, which does not make me at all happy.  But we're going to try to continue doing dose dense.  Wish me luck all!  I feel like I'm in the best of comany here.

LRM216

Hang in there epgnyc - exact same scenario hit me.  I was hospitalized 5 days with febrile neutropenia immediately after my first A/C - then cellulitis in surgical breast - had to be on iv infusions 24/7 for the next 6 weeks - every dang a.m. 7 days a week - ugh, it was disgusting.  Thank God for my port.  My second A/C was delayed one week and all remaining A/C's were cut by 20% (that is very, very common so do not let it frighten you.).  Fortunately, it never happened again, but she feels it certainly would have had she not cut the chemo.  Wishing you the best and hang in there - this too shall pass.

SusanHG

As far as how i felt before dx, I hadn't been well for a good year and a half to 2 years (BS said that my DCIS was probably there for 2 year).  I had a back problem, still do, that was not healing.  My chiropractor said to get more testing because there was something going on in my body (he thought it was MS).  All my mris and nerve testing came out fine, but wouldn't you know it, my mammogram found brest cancer!  The people who claim mammograms shouldn't start until 50 should be shot!!  It saved my life.  Well, for now anyway.  I am almost done with rads (two weeks to go), and my breast is living proof!  Does not even look human at this point!! :-) But, just happy that I was able to salvage it...

tibet

Do you mean "herpes virus " that would give cold sores on ones lip? I often get cold sores after a cold or so. The sore would be really big and ugly and I would use anti-herpes virus cream before it bursts and usually with the cream, it goes away quickly.

I read most people have herpes virus that give cold sores when one has a cold. Alex, are we talking about the same virus?

alexanjb

newalex,  yes I am talking about the same virus, only I get it in the eye area instead of the lip.  My mom gets them on her mouth and the theory is that I got it from her kissing me.  However, MY kids have not had it and my sister doesn't either.

Titan

OMG..I just typed this whole freaking book and somehow I lost it..oh well..

Alex..Suze was the one who said about "people in your daily live thinking that BC is nothing"...and very treatable...tho I think that about everyone would agree with that comment anyway...

epgnyc..hang in there with the chemo..hopefully you can still do the DD..gets you done quicker...we will help you get through..really!

About that virus..very interesting..trying to think if I had a virus during the last 5-10 years and I can't think of anything...I guess it would make sense if it brought your immunities lower than normal.

SusieSGB

I am 62 and was diagnosed with triple negative breast cancer at the end of last summer .  I've finished lumpectomy, chemo, and radiation.  Just waiting for hair and energy now.  No matter how good your support is, cancer is a lonely experience.  I hate not recognizing myself in the mirror.

gillyone

Welcome SusuieSGB. I wish you'd found us sooner then we could have helped you through all your treatment. However it's good to meet you now. I hope hair and energy return soon.

BernieEllen

I had a virus last winter and put it down to my immune system being so low after the shock of two of my cousins dying within weeks of each other from sudden death syndrome.  Never felt so ill. 

riley702

I totally think some BCs are triggered by a viral exposure. A viral exposure during pregnancy increases the likelihood of the baby having a congenital heart defect, so why couldn't it also be a trigger for BC?

TifJ

Alexandjb- I have gotten "fever blisters" from the herpes type 1 virus my whole life. So did my Mom. My Dr. told me that is likely how I got it too, by my Mom kissing me. I do wonder if viruses don't make us more susceptible to other things. My Mom passed from cancer too, but it was cervical that had spread to her colon. I try my best not to kiss my kids ( very hard) when I have a sore. I get them around my mouth, between my nose and mouth and just inside my nose!

Welcome SusieSGB!

Fighter_34

Hello Ladies!

I was exposed to Agent Orange through my DAD. He fought in the Vietnam War. I remember going to the Doctor and rec'ing radiotheraphy as a teenager. Nobody told me what was going on at the time. Years later I am dealing with BREAST CANCER and now all the facts come out.

This is a rough journey I was reassured by my doctor that after THIS my chances for anything else is drastically reduced due being that I am so many years out from radiotheraphy.

There could be so many reasons why we are all here. I say let's find out what is really going on. My lovely Granny is 94 years old w/ no health problems, and I think it is b'cuz she grew up in an era when CHEMICALS wasn't in great use.

I don't think chemicals cuz cancer solely however they do have a profound impact on your immune system!

Pamelajo

I see we are still debating why we got cancer and what to avoid now that we have it LOL

everything in moderation girls.  Doesn't matter what healthy lifestyle you lead or what you eat, if it intends to come back it will.  i'm proof.  Been healthy living forever and now it's progressed to my skin. 

just do what you can to enjoy life.  anything less is a sin at this point

MBJ

My DH and I watched a Nova Documentary on Stress and how it can destroy the immune system and the scientific proof.  I can just imagine the reaction of insurance companies if they had to start covering stress related illnesses.  I am sure mine was stress plus a damaged thyroid in a car accident.  Never felt the same afterwards.  There are so many things: environment, chemicals, viruses, genes.

Fighter:  Wow, I had no idea you had gone through that.  What a brave little girl you must have been. 

Suze35

I am trying very hard not to do the second-guessing. I think I hope that if I can find a cause, then I can find a way to keep it at bay. So if it was my diet, then if I improve that, I have a better chance. But I agree that it is a confluence of events - the environmental pressures, the stress, diseases, who knows - I had a mammogram then bam, 5 months later cancer - maybe it was the mammo!  I'm working with my therapist to get past this phase, but I'm not sure you ever do.

I also have the herpes virus in my system, although I rarely get cold sores - maybe 1 time a year.

I DO think environment plays a key role. Cancer rates are climbing overall, as well as other things such as autism, ADHD, etc. Somewhere along the line, we (general) are damaging our children genetically. I'm a big advocate for organic, so even though my kids might eat chicken nuggets, I make sure they are free of antibiotics, etc. I can only do so much, but I'll be damned if my kids spend their childhood rolling around on chemical-laden lawns, eating fruit and veggies sprayed with poison. Okay, end of rant.

Susie - welcome! I hope we can offer you support as you end treatment...that is often the hardest part.

Fighter - boy, you have earned that name! I'm so sorry you have had to go through so much.

Titan - I've started writing my posts in WordPad and copying and pasting. Saves me a lot of grief, lol.

Teka

I was pleasantly surprised by the Ladies Support Group at the Cancer Center giving me a lovely red prayer shawl.   I now feel warm and cozy while watching TV in the recliner.  However, I am taken back by several women in their 60's that I know who haven't even had 1 mammogram.   I so admire and respect anyone putting in the time to help increase the awareness of BC.   Awareness and cure go hand in hand.

Titan

Pamela Jo!  How the heck are you?  We missed you!!!  Glad to see you back here but what the heck with the skin mets?   What can be done about them? 

TiffanyF4

My cousin passed away 3 years ago from bc. Toward the end her husband and parents almost went into hiding with her. We couldn't get a phone call in or a visit. They always turned us away. The only reasoning I could ponder was that they were all suffering and in those moments could have cared less if they were hurting our feelings. It was so painful for them. I wish I could have visited and offered my support but I respected their wishes to not share their pain and grief with everyone. Sometimes I guess it is a very private intimate moment in time. Myself having my crazy bunch around me is exactly what I need. My best advise is to respect their privacy and just make themselves available but don't push. Absolutely don't be offended or have hard feelings about it.

alexanjb

Has anyone heard of a connection between polycystic ovarian syndrome and TNBC?  My daughter was just diagnosed with PCOS.    I wonder if I had it and it was never diagnosed.  I had many of the symptoms.  My onc didn't do genetic testing on me.  He said I was too old at diagnosis to be worried about that.  I worry about my daughter.  She has always worried about not being able to conceive, even when she was a little girl, but more than that I don't want her to have BC.  Her gyn prescribed Metforim which is also a diabetes drug.

Titan

Tiffany...thanks..I spoke to my friend and they did see this couple over the weekend.  She thinks that he is definitely starting to withdraw..the situation you described with your cousin sounds exactly what my friend and her husband are going through now.

jenn3

It's been a while since I've posted, but wanted to pop in to say hello.

I'm with Pamelajo - getting BC is a crap shoot.  Did you know that they've found BC in mummies adn in women hundreds and hundreds, thousands of years old?  They didn't have plastics, processed foods, chemical plants, etc.  I think being healthier helps us to fight the disease a little better, but still a crap shoot.

Titan  - so sorry to hear you're being pushed away.  I guess when the real stress of the end is near people withdraw unintentionally trying to handle their own stress and loss and sometimes forget about others (((hugs))).

Jenn

TysMom

I scheduled a mammogram the minute I felt a lump.  It didn't show on the mamm or on the ultrasound and was diagnosed as a cyst.  Well 5 months later when the "cyst" started burning I went to a surgeon and had it removed.  Turns out that it was actually a 5cm TN tumor.  We were all floored.

Did 12 Taxol, 9 Avastin, 4DD A/C bilateral MX, 28 rads finished 1/31/11.  Thought I had done everything right.  On April 7, 2011 I was dx with mets to liver lung and t-spine. Now being treated with Gemzar / Carbo and will start rads tomorrow for spine.  Doc said he wants to do rads now because what is there is small and he wants to keep it that way.

This stuff is evil and I am certain it is from the devil.

Titan

You know what Ty's mom?  I agree with you!

gillyone

Teka - do you think those women in their 60s who have not had mammos don't know about them? That they are ignorant about mammos and BC? I don't think so.They have CHOSEN not to have a mammo. (Though I do know there are women out there who can not afford to have one - that is a different problem). It is hard to find any woman of any age who is "unaware." I am tired of the money spent on awareness which would be better spent on finding a cure. (I an dreading October.)

Awareness is simple - every mother teaches her daughter to do self exams, (it should be as normal a thing as brushing your teeth) and get mammos at the appropriate age. The cost? Nothing.

What scares me is the number of women who have mammos and then believe they must be safe! If only it were that simple.