Calling all TNs

Lovelyface

Ladies, although this maybe going a little out of subject, I must ask you all for your advice as we are all TN's and this is the best place to find experienced women. And I cannot find literature anywhere which will help me truly understand everything before I decide to give up my own breasts and consider BMX and reconstruction.  I am going out of my mind.  By the end of December, I have to decide what I will be doing with my breasts.  I don't know where to go for information, who to talk to, in order to make this very difficult decision.  Different Docs are saying different things.  Even the Tumor board recommendation is hardly assuring.

I had an invasive tumor (3.3cm, GradeI II) in my left breast.  In addition, there was a small satellite nodule behind the nipple,  which was InSitu, intermediate to High Grade.  All this was taken out during two lumpectomies, by a clear 3 cm margin in the left breast.

There was no cancer in the right breast, but they did an MRI guided biopsy and took out a nodule which was highlighted in the MRI. The Biopsy revealed that there are "residual columnar cell hyperplasia with flat epithelial atyipia and focul atypical ductual hyperplasia extending to the surgical margin" (this is still there today).   One surgeon says this is microscopic, they cannot see this with naked eye, so no more surgery. They put a marker in this area so they could find the place in the future.  I am still trying to ask my surgeon to go to this area, and give me clear margins, take all those atypical cells out.  Not sure if they will do surgery, since this is not cancer yet.

My Onc. says the 4 steps leading to cancer, atypia is 4 steps out. Yet he says that if I was his sister, he would not recommend that I have a BMX.  Possibility that this stuff in the right breast could never turn cancerous or maybe it could, no one can tell.

Reading up on not so good outcomes of BMX and Recons. I am trying my best to keep my own breasts, but my life and safety is my paramount concern.  However, I also know that some women have complications from BMX and Recons. and end up taking their implants out.  What then?  Be flat the rest of your life?  Some women's bodies rejects their implants (I have a feeling, mine would do it) and they end up taking them out after a few years.  I spoke to two PS and they both did not impress me.  Tram Flap would be a huge consideration, major surgery, can't even think of it.

I have also heard in my support group that MRI's reveal too much info.  When they say "mild scattered nodular foci" - is this common for all breasts?  I also had language in MRI such as "mild scattered nodular foci with intermediate plateau enhancement".  I also read up on the Govt. ruling on how pathologists should read path. reports. It almost feels like the path reports are not uniform and could depend on independent pathologist' opinions, sometimes on how they present their reports.

Tumor board recommended lumpectomy and radiation with dose dense chemo.  Before radiation, my surgeon wants me to go see her.  She seems to be recommending BMX for most women, as we found out in support group.  She is BMX hungry.

I am thinking, do women really know the exact nature of their cancer, before they give up their breasts?  Or do they do it out of sheer fear?  This decision will affect your whole life, i.e. giving up your breasts.  Doesn't chemo kill all these atypical cells?  My tumor in left breast was invasive (total score was 7, which I am not sure how it compares with others or what it compares with).  The Insitu was a grade 2-3, scary.  I had one sentinel node taken out which was benign.

One other thing - I had weakly positive 2% of tumor cells progesterone receptor with weak to moderate intensity.  They consider 2% as negative.  And fewer than 1% estrogen receptor positive, therefore, regarded as negative.  I am TN, no doubt.

What kind of doctor can explain line by line of my MRI and Path report to me so that I can make a 100% informed decision, ladies?  Can you please help me. I don't want to BMX out of sheer fear and have any regrets later in life.  Please help me, if someone out there went through a similar experience.  And I am a TN, should I stop this nonsense of trying to keep my breasts and just do BMX, without any question?

Thanks all for reading my long post.

Vina

Luah

Lovelyface: So, if I understand correctly, the tumour board says Lx etc., your onc doesn't recommened BMx, and your surgeon does. Meanwhile, you are trying to balance your fears of recurrence versus a bad PS outcome. I can understand your anxiety.  You need more information. One of your doctors should go through your path and MRI line by line and explain. That is their job.  Please press for that. 

Did you see my earlier post with links? Leading trip neg doctors say that a trip neg diagnosis is  NOT (in and of itself) a factor in their surgical decisions.  There may be very valid reasons for doing a BMx, but it seems that hormonal status isn't one of them.

As for MRIs, my surgeon warned me that MRIs do light up a lot of stuff (that previously we never would have known about, or gone to our grave with at a ripe old age).  There is a lot of discussion in the medical community about MRIs leading to unnecessary biospies and even over-treatment.  That's not to say, they aren't extremely  valuable as a diagnostic tool - they are.  But you need a doctor to fully inform you about what your scan says and how that affects prognosis, if at all.

Finally, I would say, if keeping your breasts is important to you, keep asking questions. Of course, you won't risk your health or life for your breasts - none of us do -  but you want to be satisfied that whatever your decision, it was fully informed.  All the best.

Lovelyface

Hi Luah.  You understand it exactly, yes.  I did go to the links you provided and read everything there was to read, and yes, understand that "trip neg diag is not (in and of itself) a factor in their surgical decisions.  You are very informed, Luah, that is wonderful and thanks so much for understanding me.  You can imagine my anxiety, I can't relax.  I am going through a tough time with chemo, but I want to see some light at the end of the tunnel.  Will I be doing radiation after chemo or not?  if I do radiation and later decide BMX, the PS says the skin will become not too good to get a good outcome, complications could develop.  I am just so very sick of this.  I HATE this disease with a vengence, and wouldn't wish this on my worst enemy.

There doesn't seem to be any breast experts in my community who would really explain all this to me.  But I am going to try going to several, before I give up my breasts.

Thanks again.

Teka

Hi! Lovelyface,

Radiologist and Pathologist.   I thought you were lacking information about BC.   You're being overwhelmed with information about BC.   

Anonymous

A little fun distraction: (not checked for accuracy)

Trivial Pursuit
Can you guess which of the following are true and which are false?
Answers are below.

1 . Apples, not caffeine, are more efficient at waking you up in the morning.

2. Alfred Hitchcock didn't have a belly button..

3. A pack-a-day smoker will lose approximately 2 teeth every 10 years.

4. People do not get sick from cold weather; it's from being indoors a lot
    more.

5. When you sneeze, all bodily functions stop, even your heart!

6. Only 7 per cent of the population are lefties.

7. Forty people are sent to the hospital for dog bites every minute.

8. Babies are born without kneecaps. They don't appear until they are 2-6 years old.

9. The average person over 50 will have spent 5 years waiting in lines.

10. The toothbrush was invented in 1498.

11. The average housefly lives for one month..

12. 40,000 Americans are injured by toilets each year.

13. A coat hanger is 44 inches long when straightened.

14. The average computer user blinks 7 times a minute.

15. Your feet are bigger in the afternoon than any other time of day.

16. Most of us have eaten a spider in our sleep.

17. The REAL reason ostriches stick their head in the sand is to search for
      water.

18. The only two animals that can see behind themselves without turning their
      heads are the rabbit and the parrot.

19. John Travolta turned down the starring roles in 'An Officer and a Gentleman'
      and 'Tootsie.'

20. Michael Jackson owns the rights to the South Carolina State Anthem.

21. In most television commercials advertising milk, a mixture of white paint
      and a little thinner is used in place of the milk.

22. Prince Charles and Prince William NEVER travel on the same airplane, just in
      case there is a crash.

23. The first Harley Davidson motorcycle built in 1903 used a tomato can for a
      carburetor.

24. Most hospitals make money by selling the umbilical cords cut from women who
      give birth. They are used in vein transplant surgery.

25. Humphrey Bogart was related to Princess Diana. They were 7th cousins.

26. If coloring weren't added to Coca-Cola, it would be green. 


(Scroll down for answer.)    


 
 
 
 



 They are ALL true ..... Now go back and think about #16.
 

Anonymous

More fun stuff for the trivial pursuitists amongst us: (again, not checked for accuracy)

  Where did Piss Poor come from?

Interesting History
They used to use urine to tan animal skins, so families
used to all pee in a pot & then once a day it was taken &
Sold to the tannery.......if you had to do this to survive
you were "Piss Poor"
But worse than that were the really poor folk who couldn't
even afford to buy a pot......they "didn't have a pot to
piss in" & were the lowest of the low
The next time you are washing your hands and complain
because the water temperature isn't just how you like it,
think about how things used to be. Here are some facts about
the 1500s:
Most people got married in June because they took their
yearly bath in May, and they still smelled pretty good by
June.. However, since they were starting to smell . ..... .
Brides carried a bouquet of flowers to hide the body odor.
Hence the custom today of carrying a bouquet when getting
Married.
Baths consisted of a big tub filled with hot water. The man
of the house had the privilege of the nice clean water, then
all the other sons and men, then the women and finally the
children. Last of all the babies. By then the water was so
dirty you could actually lose someone in it.. Hence the
saying, "Don't throw the baby out with the Bath water!"
Houses had thatched roofs-thick straw-piled high, with no
wood underneath. It was the only place for animals to get
warm, so all the cats and other small animals (mice, bugs)
lived in the roof. When it rained it became slippery and
sometimes the animals would slip and fall off the roof...
Hence the saying "It's raining cats and dogs."

There was nothing to stop things from falling into the
house. This posed a real problem in the bedroom where bugs
and other droppings could mess up your nice clean bed. Hence,
a bed with big posts and a sheet hung over the top
afforded some protection. That's how canopy beds came into
existence.

The floor was dirt. Only the wealthy had something other
than dirt. Hence the saying, "Dirt poor." The wealthy had
slate floors that would get slippery in the winter when wet,
so they spread thresh (straw) on floor to help keep their
footing. As the winter wore on, they added more thresh until,
when you opened the door, it would all start slipping
outside. A piece of wood was placed in the entrance-way.
Hence: a thresh hold.

(Getting quite an education, aren't you?)

In those old days, they cooked in the kitchen with a big
kettle that always hung over the fire.. Every day they lit
the fire and added things to the pot. They ate mostly
vegetables and did not get much meat. They would eat the
stew for dinner, leaving leftovers in the pot to get cold
overnight and then start over the next day. Sometimes stew
had food in it that had been there for quite a while. Hence
the rhyme: Peas porridge hot, peas porridge cold, peas
porridge in the pot nine days old. Sometimes they could
obtain pork, which made them feel quite special. When
visitors came over, they would hang up their bacon to show
off. It was a sign of wealth that a man could, "bring home
the bacon." They would cut off a little to share with guests
and would all sit around and chew the fat.

Those with money had plates made of pewter. Food with high
acid content caused some of the lead to leach onto the food,
causing lead poisoning death. This happened most often with
tomatoes, so for the next 400 years or so, tomatoes were
considered poisonous.

Bread was divided according to status. Workers got the burnt
bottom of the loaf, the family got the middle, and guests
got the top, or the upper crust.

Lead cups were used to drink ale or whisky. The combination
would Sometimes knock the imbibers out for a couple of days.
Someone walking along the road would take them for dead and
prepare them for burial. They were laid out on the kitchen
table for a couple of days and the family would gather
around and eat and drink and wait and see if they would wake
up. Hence the custom of holding a wake.

England is old and small and the local folks started running
out of places to bury people. So they would dig up coffins
and would take the bones to a bone-house, and reuse the
grave. When reopening these coffins, 1 out of 25 coffins
were found to have scratch marks on the inside and they
realized they had been burying people alive... So they would
tie a string on the wrist of the corpse, lead it through the
coffin and up through the ground and tie it to a bell.
Someone would have to sit out in the graveyard all night
(the graveyard shift.) to listen for the bell; thus, someone
could be saved by the bell or was considered a dead ringer.

Now, whoever said History was boring!!!
 

riley702

http://www.snopes.com/language/phrases/1500.asp

Sorry if I'm being a spoilsport.

Anonymous

riley702- It didn't have to be *true* (like I said, not checked for accuracy) it just had to be *fun*.

I'm also a Snopes junkie and did consider checking the stuff out. In the end though, I just posted it for its distraction value.

LRM216

Does this mean I don't have to keep gagging every time I think of #16?

LRM216

Paulding Mom - we are getting a Cancer Center of America in Newnan, GA - but the damn thing's not even broken ground yet.  Some insurance covers the cost of flying to one - check with your insurer.  I know a few other triple negs that have progressed and have flown to one and have their treatments there and have had excellent care and results.  If you need anything at all - please, my offer still stands - just pm me any time - day or night. 

Linda

cc4npg

Lovelyface:  The decision you face is difficult, and there is no right or wrong answer.  Each decision has pros and cons and "what if's".  Some women decide to do bmx in order to have a better outcome with reconstruction... in order to avoid radiation.  However, sometimes you still need radiation.  We just don't have all the answers, so we just do our best to make the most educated decision we can.  Have you been BRCA tested?  When I had to make the decision, it was a little easier.  First, I was small breasted and the BS said I wouldn't like the result of a lumpectomy (which he would have been completely right), so I determined to have unilateral mx.  Then, my BRCA test came back positive.  I'd decided if it was positive to have bmx, so that was the end of it.  I had nipple sparing bmx Oct 7th with immediate reconstruction and have no regrets at all.  Do what you feel you need to do in your heart, and once you make your decision, go with it!  You'll figure out what you want to do.  Sometimes more knowledge makes the decision harder to make.  It's confusing.  I will say that statistically speaking, studies show no difference on survival between lumpectomy and mastectomy.

Anonymous

cc4npg- Well said!

Sugar77

PauldingMom - I've been thinking of you and hoping you get to do the PARP trial.  

LauraJane - let's hope you get the PARP, too.   

Heidi - I always look forward to your humourous (Canadian spelling) posts. 

Lovelyface - I had a lumpectomy so I can't offer a lot of advice regarding Mx. 

I took a vacation day today and lined up at the passport office to get our's renewed before we go to  New Orleans trip after Christmas.  The best thing that happened today was I could go shopping, out for lunch, etc, etc.  while my daughter and husband were at school (he's a teacher). 

Swanny

Lovelyface:  cc4nps said "Have you been BRCA tested?".  I think that is a great idea to help you decide. 

jenn3

Lovelyface -  First and foremost, it is truly a personal decision one that YOU will have to make and live with. I have a coworker that has had 3 recurrances in her breasts in the last 10 years and done chemo and radiation everytime.  I have another coworker who hasn't had a recurrance in 20 years.  It's a crap shoot.....  I had a BMX and have not done recon yet and have no regrets, but I was comfortable with my decision from day one.   I am a candidate for DIEP, which I hope to do in another year or so.  I'm wondering, have you had a chance to talk to a Breast reconstruction doctor/PS to find out what you are a candidate for and would that be a little more helpful in making your decision?

heidi - love the history lessons.....something to work our minds a little extra

Sugar - I haven't forgotten about you - I will be mailing your stuff this weekend.

riley702

I got some good news today after a stressful week. My insurance at work is not going to reimburse for any out-of-network care next year, due to a paperwork snafu they say is my fault. All of my care is out-of-network, and I had my prophylactic MX tentatively scheduled for late Jan. or early Feb. I went into the surgeon's office earlier this week to explain the problem and ask them if they could fit my surgery in before the end of the year when my coverage will change.

Today, they called back. "How does Dec. 14th sound?" Wonderful!!! They also sat down with me to see what else my insurance entitles me to before the end of the year, as I've already met my deductibles/out-of-pocket expenses. Two new mastectomy bras and a $325 dollar Amoena form are now mine, and the surgeon will write me a script for the 2nd breast form after my surgery, so I can get that ordered and submitted to the insurance company before the end of the year, too. Sweet!

If my insurance people hadn't been such butt-heads, I would have started paying them new deductibles and out-of-pocket expenses for next year, as well as paid $100/month more in premiums for the policy I wanted. I'll save that money to pay for my out-of-network follow-up appointments, instead!

Teka

Hi!

Insurance companies blow hot and cold.   A-holes.   Today, GYN took stitches out from the sore along panty line with biopsy report OK.   I've 6 doses more of Bevacizumab by way of chemo port once every 3 weeks until end of March 2011.

Lovelyface

I met with the genetic counselor and filled out my family history, all i's were dotted, and all t's were crossed 100%.  She submitted to the insurance company who denied me the blood test, because I have zero family history of cancer.  I mean absolutely no one, I am the first one to have cancer.  The test costs $3,000.  I think being TN is 6% and they need 10% in order to approve a blood test for BRCA gene test.  I am going to speak to the genetic counselor one more time to see what she can do. Unfortunately, I can't afford this test at this time out of my pocket, too expensive, among everything else going on right now.

Teka suggested I see a pathologist.  I would have loved to see one who could explain my report to me, but pathologists don't see patients directly. I will be making an appointment to see a Radiologist oncologist soon.  Next Tues is my first Taxol treatment and I am so scared, only because I did not heal all the way from my last AC as well as I had done with my prior 3.  I have so much gastric issues.

Sorry for being such a whiner, ladies.  I am trying my best to stay focused and positive.

Riley - Congrats. on getting Dec. 14th for your surgery.

Everyone else, have a great, wonderful weekend!  Hope things go well for all of you!

Sugar77

Lovelyface - I didn't qualify for the genetic testing either due to no family history.  Had I been younger at diagnosis, I would have qualified but I think under 40 is the cutoff and I wa 45 at diagnosis. 

Riley - what terrific news about your surgery being moved up. 

riley702

I didn't qualify for genetic testing being covered, either, for the same reasons of no family history and being 49 at dx. It sounds like this must be a common policy for the insurance companies, to deny testing.

Titan

I haven't had the test done yet either...not sure if I would qualify..being 49 at diagnosis.but I did have one family member..my paternal grandmother had breast cancer.  She was in her 60's at the time of her diagnosis.stupid question probably but I'm going to ask it anyway..if I'm through menopause would I still need a hysterectomy?  Is ovarian cancer estrogen driven?  Or..just like triple neg..no one knows for sure?  I know I should probably have it done for my daughter's benefit..but then again would this only really freak her out?  She is freaked out enough! (and I absolutely hate that).

Sugar77

Here in Ontario (Canada), our medical costs, as well as stuff like the testing are all government paid. So I'm not sure if that's why they are more strict on who they test but it does look as though it's consistent with the insurance companies.

Claire82

I'm coming up on a year post dx. What is the regimen of tests done now. I've seen either my onc or BS every three months. Will I be getting an MRI again or just a mammogram? The mammogram showed nothing last time, so that would worry me. Can I request an US and MRI? I have an appt next week with my BS and I'd like to have an idea of what to expect before I go. Being Triple negative scares me as the recurrence rate in the first 3 years is high, and if I can't get an MRI for three years that doesn't quite make sense to me.

What have you all heard from your doctors?

Titan

Claire..I had a mammo in May..and they recommend another one next May!  I was freaking!  When I expressed my concerns to the BS he said as long as I get a good breast exam..which I definetely get every 3 months plus SBE's..that should be ok.

To tell you the truth..I'm more concerned about mets than it coming back in my breasts...that is what I'm watching for.

retrievermom

I had a mammo 3 mos post chemo, then saw my rad onc at 6 mos, and will have another mammo at 9 mos.  My onc said that altho another primary bc is possible, he wants me to be aware of signs of mets from the TN.  It's hard not to freak about a lack of testing, but being aware of our own bodies & communicating concerns to docs is important.

Riley:  Glad to hear you were a squeaky wheel and got the surgery moved up.  

I got a bit irked by a solicitation call tonight for funds to help cancer patients.  The gal kept reading her script, while I tried to tell her "I am a cancer patient."  I got her to listen, then said, "I feel I've given enough."

MBJ

Lovelyface:  If it's any help, finding the right breast surgeon really helped me with my decisions.  It's kind of like finding the right job or the right mate, you know when it is right ad everything just clicks.  Some of us take more time then others (it took me 3 tries but I have heard of up to 9 consults!) to figure out what works for us. 

MBJ

I didn't qualify for the test either plus I am the only one in my family with BC.

Cllaire:  I don't get anything but a blood test and  a check up by my Onc every three months.  No mention of an US or MRI and mammograms are useless for me.

Carolyn: Congratulations on the new date!!!

riley702

retrievermom, that's one of the reasons I hate telephone solicitors; they won't shut up until they've gotten their blurb said. Do they think if they keep talking, I'll buy whatever they're selling? And when you try to get a word in edgewise, they just talk right over top of you. Grr... I've started just hanging up the minute I realize it's a solicitor.

And it's nice to know you guys understand my giddiness about the new surgery date. Most people would think I was crazy getting excited about another surgery, but I knew I could come here and you'd all understand. I love this place and all of you ladies, too.

Claire82

Titan - what are SBEs?

Riley - I can't wait until my next surgery!

MBJ - I never had a blood test. I asked about this and was told it was not needed...

Titan

Claire..SBE is self breast exams...but never do them on a Friday ha ha.