Calling all TNs

Angelice

hi ladies havent posted here for a bit, but read your post im now down to my 8 rads to go hope your all doing well

Anonymous

Titan- damn right we'll teach her!

Teka

This tells about LVI from Dr. Susan Love Research Foundation website

"What is lymphovascular invasion? How does it differ from having positive nodes? And how does it affect my treatment choices? 

When a pathologist examines tissue removed during a lumpectomy or mastectomy, one of the things she looks to see is whether cancer cells are present in any of the blood vessels or lymphatic vessels. If they are, it is referred to as vascular invasion, lymphatic invasion, or lymphovascular invasion (LVI). 

A woman can have lymphovascular invasion but not have positive lymph nodes. This could be because the invasion hasn't spread to the lymph nodes or because it has bypassed the nodes and moved on to other areas of the body. 

When LVI is present, doctors assume this means that the cancer has acquired the genetic mutation it needs to create its own blood vessels, a process called angiogenesis. Because a tumor that has the ability to create its own blood vessels may have already begun to spread cancer cells to other parts of the body, the presence of LVI is an indicator that treatment should most likely include chemotherapy or hormone therapy (if the tumor is hormone sensitive)."

dlcw

Thank you Teka!  I will definitely be looking back at my path report from biopsy, and will have the MX path report on the 19th of May.

dlcw

Sugar77

Hi ladies, I got some spam, too.  Not too impressed that someone is so determined to spam us individually via private messages.

timekpr - I'm one of the women with a very small tumour (under .5cm) who did chemo. My onc recommended it so I did it and I have no regrets whatsoever! It's wasn't nearly as bad a I envisioned it would be. I finished in Feb. '10 and my hair grew back, I feel good and I've moved on with my life knowing I did what I could.

Welcome new people to the thread and I hope everyone has a terrific weekend.  

I'm still a little tired after getting up at [dare I say...] 4:50 a.m. to see the Royal Wedding yesterday! I dragged my *ss into work yesterday and then had an awards gala to attend last night.  Wow...I was so zonked when I finally got to bed early this morning.  I'm too old for all getting up early and staying up late stuff. 

Teka

timekpr, did you get a copy of final pathology report and check (LVI).   I had cancer free lymph nodes but (foci suspicious for lymphvascular invasion are present).   I also have a wonderful medical oncologist, but was not told about (LVI) until I read it on pathology report.   Cover your own butt.

Teka

dlcw,

Your welcome!

MBJ

Welcome to all of the newbies!  So sorry you have to be here but you have come to a great place to find support from others. 

Re: Chemo vs No Chemo.  When I was first diagnosed I was very ignorant regarding all things BC--Never thought I would do chemo, only wanted a lumpectomy, didn't want radiation--boy, I could go on and on about what I wanted.  Well, what I wanted and what I needed to continue living were two completely separate things!  I don't think I had LVI, because I also didn't need to have radiation.  My advice:  go get three opinions and listen respectfully to what these experts have to say.  Titan is right, this is our only shot at it and if you have even a hint of LVI and don't do chemo now, you could end up having much worse consequences and then you're looking at chemo for life. 

Lynn18

That's a good definition of LVI, Teka.  dclw, my path report from my biopsy said "no vascular invasion present",  however, my path report after surgery said "vascular space invasion present".  This was even though there was just a small amount of tumor.  Sounds pretty scary to me, but like others have said, it often goes with having positive nodes.  I wonder if it is more common with triple negative BC.

Teka

Lynn18,

LVI is scary crap!

Teka

Lynn18,

LVI is scary crap!

Teka

Hi! Titan,

My medical oncologist examined a sore lump up under (L) breast which seems to be attached to the rib cage, and Tuesday having a mammogram and ultrasound.   Maybe the compression bra caused or irratated an existing lump.  My (L) breast is so sore off and on from truncal lymphedema.   Enjoy the weekend. 

Anonymous

Teka,

That was a great blurb on LVI you found, put into laymen's terms. It really helps the newbies understand the importance of getting, reading and understanding their path reports. Like you said: "cover your own butt".

This has been a *long* day. Up at the crack of dawn to man the wildlife booth for a local festival and then off to participate with my sons at a Relay for Life. I didn't do the survivor lap or hang around for the luminaries to be lit. Been there, done that. Time to move on....*way* too much "pink".

Beets

Thanks to all of you for all of your kind words. Now that it is all ( I hope) behind me I realize what an ordeal I have been through. Try not to spend too much time thinking about the past and more energy spent thinking about the future. Although my case may not sound too promising in respect to PARP inhibitors, I still do think it is the closest thing we have to a cure. Because it initial worked for me, I am very hopeful. It has worked for over 60 women in the study so far. TN is a nasty and persistent one. Sending my positive thoughts and optimistic attitude to all you newbies out there. Stay strong!!!!!!

Titan

Thanks Teka for the LVI info...as Heidi said it was written in language we can understand..I will get that dang path report this month...I will, I will, I will...

I swear I still have chemo brain..took the car in for an oil change on Friday am (the only reason I remembered to do that was because I put a note in my car)...and then when I left work I walked out in the parking lot..couldn't find my car ANYWHERE...started to freak..thought it was stolen or something...then i finally remembered...I said "f" it..and just walked to the dealership in my high heels...I was too embarassed to go back to work and ask for a ride.(short walk..must about a mile or less)....F it..I just went stomping down that dang street...

tibet

What I don't get is: Do they exam the LVI in the tumor they took? I don't have LVI in the tumor as stated in the path report, but I have micro met (less than 1mm) in the first sentinal node. Anyone knows why?

riley702

I'm pretty sure my path report didn't mention LVI. Is it because I did neoadjuvant chemo? I'm going to have to go drag that thing out and read it again, if I can remember where I put it!

Kelley41

Speaking of Path Reports...Something to think about....I have 2 daughters (10 & 12) - so I made copies of my Path Reports and put other information together and put the copies in 2 different envelopes and labeled them for my daughters and put them in our safe.  I hope they NEVER need the information, but if something should happen to me, then my daughters will have all of  my breast cancer information. 

Suze35

Titan - my path report was so terrible, I had my DH file it away someplace I can't find it, so that I don't obsess.  Ugh.

Kelley - I am actually keeping a copy of my entire medical file for my kids, including all films and discs of scans.  My stepfather's first wife died of ovarian cancer, and he really struggled to get information 15 years later for my stepsister.  I agree that our daughters need quick access to this information, and hopefully they will never need it.

Beets - I seem to be following a long-term path such as you.  It is really taking a toll on me mentally, so I am very happy to hear you are at the other end.  I will keep you in my thoughts that you remain cancer-free!  I agree about the PARPs, they seem to really help some TN. 

So I don't know if I should be happy or not, but my supraclavicular node has reduced in size after 3 radiation treatments.  That is great in one way - but it means that it is likely cancer, and not surgical changes, which isn't the best news.  So I'll take the good - it is shrinking!

Hope everyone has a great Sunday!  We are planting some rose bushes - my oldest son wants to grow roses - and am getting some broccoli and brussel sprouts down today too.  Slowly starting to get our yard ready for summer.

Anonymous

I, too, have a complete file container with all my medical reports.

As for LVI, they examine the surrounding tumor tissue submitted to pathology and test for it's presence.

Titan

Agree with you guys on keeping the med reports for your kids..I've got to get that done.

I'm trying to get my daughter to take D3...can't get her to do it...I told her that it won't hurt anything and maybe it might help..maybe..

Lynn18

Titan:  Speaking of vitamin D3, I read an article that said us TN'ers are even more likely to have lower D levels . . . as opposed to women with ER+ breast cancer.  Wonder if anyone else has heard this?  I'll get mine tested next week, and I'll ask my onc about it.

MBJ

Suze:  So glad that radiation is working for you.  Hang in there!  Big hugs!!

riley702

Lynn18, I asked my onc to test my Vitamin D levels and they were in the teens! Even after several 6-8 week rounds of mega (D2) supplements. I finally started taking 5,000 ius of D3 a week on my own and my levels are up to the 50-60 range. If I stop taking it, my levels plummet back down to the teens.

cmksocal

Lynn18 - My vit D levels were also low.

Colleen

Suze35

Thanks you MBJ!



My Vitamin D was at 19 when I was diagnosed. I take 4000iu a day at the moment. My MO said my kidneys would flush out what I didn't use. She wants it over 60.

Luah

My vitamin D level was at 78, and that was during chemo (and in our northern winter). I had not been taking much in the way of supplements, ever. I now take up to 2000 IUs D3 a day, on my BS's advice. 

Fighter_34

Great convo ladies!!!

I buy Vit D3 & C gummies for the kids. I give it to them at least three times a week. The kids are 9 and 3 so I am looking at the overall cummlative effect. So I don't do the strong stuff for them. D level was very low when I first started. Now it's in the 40 range.

@Heidi-I keep all the family medical records. Trust if I don't understand something I don't mind asking for an guidance. 

And to the young lady not sure about chemo. Pls check all the facts before making a final decision.

Nice out ladies hopefully everyone can get out an get some excerise and REAL vit D.

I HAVE ON MASCARA LADIES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YES!!!!!!!!!!!!!!!!!

Anonymous

Mascara--- WhoHoo!

I've been out all morning cleaning out the garden beds of leaves and weeds around the pool area. Two Boston Terriers licking my face as I worked!

MBJ

Heidi:  Guess that means you are feeling a bit better?  Glad the dogs could help you out there.

Fighter:  I looooove that I can wear mascara again-yay for you!!!