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10 YEAR SURVIVOR - MORE RESULTS, DOESNT SOUND GOOD!

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hello Everyone,

I am the newbie, Nina, who has been posting about her latest breast cancer diagnosis.

If you remember I mentioned, I had breast cancer 9 yrs ago, i would have been a 10
year survivor next mth, but now i got a reoccurance, or yet another breast cancer,
they are not sure yet, not all pathology has come back....the doctors, sent it out
to YET another lab, for a 2nd opinion, I might get a 3rd opinion.

The breast surgeon called me, he said, the tumor is "POORLY DIFFENTIATED"....THAT
IS NOT GOOD.....THE GRADE IS ON BASIS OF 3 GROUPS, ONE BEING WELL DIFERENTIATED, TO
INTERMIDATE, TO POORLY... MY GRADE 9, WAS POOR....A 9-12 BEING VERY WORST.
THE "HER" IS NOT BACK YET...AND WE DONT KNOW IF IT IS, "ESTROGEN RELATED OR NOT YET"

SO I HAVE A POOR DIFFERENTIATED, 9 POOR GRADE TUMOR....2.1CM...AGGRESSIVE!

HE DOES NOT KNOW THE STAGE YET...BECAUSE WE HAVENT DONE THE MASTECTOMY YET.

HERE IS SOMETHING BAD TOO.....9 YRS AGO, I STARTED WITH 1 SURGEON, DIDNT LIKE HIM
AT ALL....SO I WENT TO THE ONES I HAVE NOW....WHEN HE WENT TO CHECK MY "LYMPH NODES"
"THE BAD SURGEON I MEAN"----HE DID NOT DO THE "SENTINAL NODE" WHAT HE DID WAS,
"Disected" instead, you know, "he took a big chunck of skin and nodes out"...that
MORON....TOOK 22 NODES......OUT!

Now my current surgeon told me....HE CANT DO A SENTINAL NODE BIOPSY! OMG WHAT WILL
THEY OR I DO????????????

OMG, THIS DOESNT SOUND GOOD, I KNOW IT DOESNT.....THEN MY SURGEON SAID, BECAUSE I
AM 340LBS...I COULD BE AT VERY BIG RISK FOR CHEMOTHERAPY( I AGREE )..PLUS, I HAVE
DIABETES AND HIGH BP,,,, HE SAID, THE ONCOLOGIST MIGHT GIVE YOU..MEDICINE, BUT? THOSE
MEDICINES, ARE THEY FOR SYSTEMIC TREAMTMENT? OR JUST FOR THE TUMOR??????

I will be 51, next mth.....OMG, I FEEL LIKE WITH ALL THE INFO HERE, NOTHING
SOUNDS POSITIVE.....SOUNDS LIKE A DEATH SENTENCE......IF THERE IS NO SENTINAL
NODE, HE WONT BE ABLE TO DECIDE IF THE NODES ARE NEGATIVE OR POSITIVE, HE CANT DO
A SENTINAL NODE. AND THIS IS AS I SAID...A 2.1CM....AGREESSIVE, AND POOR GRADE.

OMG, I FEEL LIKE IM GOING TO NOT MAKE IT....THIS WILL METASTASIZE IT SEEMS IN
TIME.

OMG, PLEASE SOMEONE GIVE ME SOME INFO? ANYTHING THAT WILL HELP ME? WHAT HAPPENS
IF HE CANT GET THE SENTINAL NODE? THAT MEANS, THAT CANCER MIGHT GO UNDER THE
ARM AND JUST BE LEFT THERE? OR NOT BE ABLE TO BE FOUND?

I AM SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO SCARED, CRYING...OMG, WHEN I HAD THAT PET
SCAN LAST YEAR, IT WAS A 2CM....RIGHT AFTER I WENT TO SURGEON, AND HE DIDNT SEE
IT ON MAMO OR ULTRASOUND, THE "MD RADIOLOGIST" WHY WHY WHY, HE PUT,
"FATTY NECROSIS" HE DID NOT PUT A SIZE, OR THAT IT WAS MALIGNANT....HE SAID
NO CYST...NO LESION...I DONT GET IT!!!!

NOW JUST LAST WEEK......THE OTHER MD RADIOLOGIST...PUTS A 2CM....JUST LIKE THE
PET SCAN....READ 9 MTHS EARLIER......9 MTHS...ANYTHING CAN GROW, EXPECIALLY IF
IS....AGRESSIVE.....WHY WAS IT THE SAME SIZE???????????? THIS WAS NOT A NEW
FINDING......IT WAS THE SAME....THING THE PET SCAN SAW. WHY DID THE RADIOLOGIST
MD....LAST YEAR SAY IT WAS , FATTY NECROSIS? BUT HE DIDNT SAY, A SIZE LIKE THE
PET DID OR THE....RADIOLOGIST MD DID THIS YEAR?

PLEASE FRIENDS, CAN YOU READ THIS OVER ....PLEASE CAN YOU SEE WHAT IM SAYING?
WHO AND WHERE SHOULD I GO FOR ANOTHER OPINION....AND CAN YOU MAKE SENSE OUT OF
THIS???? ALSO.....HE CANT DO THE SENTINAL NODE....9 YRS AGO A SURGEON TOOK
22 NODES OUT......OMG, HOW WILL THEY CHECK THE NODES NOW?????? HYSTERCTOMY
IS SCHEDULED FOR....MARCH 27.

HELP ME PLEASE, HELP ME......OMG, I HAVE A TERRIBLE FEAR.

Marcia527's picture
Marcia527
Posts: 2735
Joined: Jul 2006

My surgeon removed 15 nodes. I can't answer your questions but you should write them down and ask the doctor when you see him.

They couldn't do a sentinel node biopsy for me either because they gave me chemo before surgery.

Take one step at a time. It won't be so overwhelming then.
hugs.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Your oncologist is the one to answer your questions. None of us are doctors and really shouldn't even try as we don't know. I am so sorry that you are going thru this and I hope that you will get the answers you need.

Good luck and try to take it one step, one day at a time,

Megan

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Yes I know you guys aren't doctors, and can't answer my questions, that is true and
obvious, but sometimes, this is not just a support board, women have ideas or, things
they been through similiar to other womens situations and they may share it with some-
one is what i meant. Sometimes, someone who has gone through something similiar had
a resolution to the problem and it could be an eye opener for someone else. I have
been through the medical system for 15 yrs, I know how things are. My dad died of
lung cancer 8 yrs ago next mth, same mth of my birthday, april 26. I am very pro-
active with my health.

Sometimes, we get frantic, and we are desperate for answers....i am not a 1x but 2x
survivor, of rectal, breast and now a 2nd breast cancer....it is scarey, i am 50,
and, i have disabilities, i am disabled....and housebound most times, unless going
to a doctor...this board, some other friends from online..and some other friends
in real time, is all i have. I have no siblings, or kids, no husband, only immediate
family is my mom, long time family friends, a few cousins here, all the rest are in
italy and canada...coming to the board comforts me...i like to ask questions,
they are not really medically based, well yes and no....but its not like, i am
asking....can you tell me my cancer diagnosis, they are more based like, do you
know what this or that means....or, has anyone heard of this, ect...because
really...you should be very proactive with your health...and know what most things
mean...with all that goes on with breast cancer health.

I am very scared, expecially, since i dont have much of a life anyway, what life
i have, now i like to keep, so i can get to an older age.

Did you know that some people know more then the doctors? Doctors dont have time
to run around to every patient and spend, hours with them, that is how it is today,
most of us, research and find things, and then verify it with them. Some doctors
yes spend time, but, not alot alot, its just the way it is today. I get anxious
i feel this board is not just for, good lucks, and im sorrys, and wish you well,
it is also a discussion board...so,if i ask something, that i hope someone had
same experience with or knows about....i dont think that is wrong.

Thanks for your advice and wishes, and welcome to the board, i just came back
not to long ago, but I use to be a member of it a while back.

God bless you.

Nina~

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hello Marcia,

I dont understand, why they couldnt do the sentinel node biopsy for you, because
they gave you chemo before surgery? I dont understand what you meant by this, could
you please evaluate? What happen to the sentinel node?

I know i have to ask the doctor....i know.

As i told the other poster, I ask, some questions because i am shakin up, sometimes
this board is all we have til our next convo with doctors, i came 9 yrs away, im a
2x cancer survivor...rectal, breast, and now a 2nd breast....some questions can
be asked, i ask them to see if others have gone through same thing, and they can
evaluate with me.

Best of luck to you.

Nina~

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

When you had your surgery 9-10 years ago, sentinel node biopsies were not done or at least not done by very many surgeons - removing a bunch of lymph nodes was common/standard.

It's my understanding that the the theory behind sentinel node(s) is that they are first node(s) that receive fluids from the area surrounding a tumor. The nuclear medicine folks inject die into the breast so the surgeon can look for the nodes that "take up" the die first. Those are the ones that are presumed sentinel nodes and are removed. If there is no cancer in those nodes, they don't remove any more nodes, but if there is, they remove more nodes. I would assume that your sentinel node(s) was/were removed along with the other nodes at your surgery 10 years ago. It sounds like the surgeon did the type of surgery that was the standard of care back then. I think your question now should be whether more lymph nodes will need to be removed or can be removed and if so, where?

About your grade/score. The tumor grade is based on the how abnormal the cells are, using a technique called SBR. http://ccm.ucdavis.edu/bcancercd/311/grading_diagram.html This is a very good and simple explanation. Again, your question should be what does this mean in my case? And please remember, that there are many women who had Grade 1 tumors that recurred. They're typically just a little lazier and take a little longer to rear their ugly heads again if that's what they're going to do. There are also many women with Grade 3 tumors who never have a recurrence.

While this may be helpful in explaining how the numbers are generated at this point in your diagnosis, until you've had your surgery and the whole picture of your cancer can be reviewed (hormone status, whether there was any lymphovascular invasion, margins, etc.), most of your concerns can't be answered yet - even by your oncologist. Yes, these are all pieces to the prognostic puzzle, but you are an individual, not a statistic. "They" can say that X% of women with Stage X, GradeX, hormone X Y Z, etc. will have a recurrence or die within X years. Well, there's that other X% who won't and you just don't know what group you'll fall into. I think this is why they don't use the term "cured" anymore, but use "no evidence of disease" because well - they just don't know.

Your other illnesses will factor into the type of treatments you're offered, but please remember, surgeons don't know everything that medical oncologists have up their sleeves. I am hypertensive (but controlled) and when my oncotype dx score said chemo would improve my odds of recurrence, my oncologist chose taxotere (and cytoxin) instead of adriamycin (and cytoxin) for me. She said it was every bit as effective, but had less toxicity on the heart. I was 63.

When I look back at my two cancers and diagnoses, I remember my fear then - I can't imagine being told "it's back" or "there's another cancer", especially after so many years.

Susan Love's Breast Book is an excellent read, as is David Servan-Shribner's AntiCancer Book.

Good luck, Nina. Wish I could say it will get better again for you. I do know that for me knowledge was empowering and being able to hear about/from others who've traveled this jouney no matter where their road has taken them has been the most helpful element for me.

Suzanne

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Suzanne, ty ever so much for all you wrote for me. It really did help alot. My doctor
also is suggesting to put me on the same chemo regimen. See, i am 340lbs, and they are
worried about me even under an anesthia block, where i will be semi awake and worried about me not being able to handle chemo....armidex i heard is very toxic, but, i also read that, doctors are scared for overweight and obese women, if they give to little chemo, it wont be effective, to much chemo....and it could be dangerous to the heart muscle and expecially since i have other disabilities, like high bp and...diabetes and...edema in lower extremities, plus i have a nose and ear problem, where, i get pressure on my chest neck back, its awful, doctors ruined this so many years ago...i have to be honest with the anstesialogist, about this problem.....i remember i came to these now breast surgeons of mine 10 yrs ago....after i saw this dope breast surgeon who took 22 nodes out, now they cant do the sentinal node....how the heck are these poor doctors of mine going to determine if, theres cancer anywhere....near the mastectomy they do? prognosis and survival also is based on knowing about the nodes under arm....!

I hate this beast, breast cancer it is causing so much trouble for us all.

Now i been reading the boards....and i forgot that i could get scar tissue?
after mastectomy? damn it.....i already have hard time chest breathing, not
from lungs, from muscles, pressure.

I have to tell them about this...omg what a nightmare!

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Tuff,

Suzanne gave a great response to the purpose of a sentinel node and the biopsy.

When I had a mastectomy back in 1994, a lymph node dissection was all they did. I had a tumor in the axilla and had a 2nd lymph node dissection 4 1/2 years later. The area which had been excised the first time was completely covered in scar tissue. It is very rare to do a second lymph node dissections and I certainly would never recommend having one. I ended up with neuropathy pain in that area.

Suzanne also mentioned a few good books, Dr. Susan Love’s Breast Book was one I lived with during the early years. It remains a good basic guide.

There are no stages that are exempt from morphing into stage IV. Most women don’t and if your cancer remains in your breast, you will not be stage IV.

I have lived with 3 recurrences and 4 progressions and it’s not the end of the world. I am in my 17th year and plan to be around for a few more. My 3rd recurrence showed both lungs and lining studded with tumors along with a lining effusion too. I am still here to write about nearly 4 years later. I had an idea that it was back the year prior to the ct scan. I was schedule for a scan four months prior but, I had an acute eye infection that was much more urgent. The ct scan was put on hold until the other was fixed.

Your oncologist will offer you a plan once all the test ER/PR+ & Her2 are back.

Hope this helps alleviate some of your fear.

Best to you,

Doris

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Thanks also to you, you and Suzanne gave me some good help. I understand about the
disection but how will they stage the nodes now if there are none? Like I told Suzanne
that is another factor based on survival and prognosis.

That first idiot surgeon that is retired now 10 yrs ago, he wanted to take my breast off with 2 little tumors and neg nodes....he took 22 nodes for no good reason, now this poor surgeon of mine for 10 yrs i have had, cant do the sentinal node, what will he do? how are they going to determine involvment or survival or treamtent plan? My oncologist said, if the
nodes are not be able to be identified, they assume negative nodes

By the way Doris, Suzanne and everyone....so far pathology came back, but they are
sending it to yet another lab...because of the discrepency i found on the reports.
My breast surgeon said, the scans say one thing but pathology says cancer Nina, i said,
but even best doctors can make mistakes.

Anyway, so far....on one pathology...it says....

1.I am Estrogen receptor positive

2.Her2 was negative, according to FSH

3.Tumor, was 2cm....from what they see on path, might be different when they
take rest of tumor out....after mastectomy.

4. Grade was a 9....this didnt sound good, this is poorly differendiated.

My breast surgeon said, at first, he didnt know if it was a new cancer in same
breast from 10 yrs ago, or if this is a reoccurance....he said, this tumor
pathology outcome....seems to be same as the first breast cancer in 2001.

My oncologist said, when it appears as a local reoccurance....they usually
call it Stage 1, of course based on the size to....he said, 2cm, is stage 1,
but i thought i read stage 2 on a site, mine was 2.1cm.

Can you guys tell me what you think of all i said?? please, any words of
encouragment do you think these are bad odds, or what i wrote here, sounds
bad or good, care to evaluate on any part of this?

I cant tell you how scared i am.....i am also a 7 yr anal cancer survivor,
10 yr breast survivor and now this....i had got diagnosed 2001, but finished
rads...2002....so they say always count from there...next mth would have been
10 yrs survival clean....but you know what? why should i call this a 9 yr
survivor? we are in 2012, just not into next mth yet.

I AM CALLING MYSELF A 10 YR SURVIVOR....WITH NOW A REOCCURANCE.

My breast surgeon said....to have gone 10 yrs, and having a reoccurance now
is not that bad of statistics and first time, i had NO CHEMO, NO TAMOXIFEN
JUST SURGERY AND RADS....I WAS STAGE 1...NEG NODES....1.4CM TUMOR....IT
WAS POORLY DIFFERENTIATED...AND ESTROGEN RECEPTOR POSITIVE. Something tells
me, had i took the tamoxifen back then maybe i would have gone longer then
10 yrs....but who would know? i was over 4mm, should have had chemo but it
was only 4mm over.

This time, I dont know if this will be stage 1 or 2...estrogen positive, grade 9,
2.1cm tumor ( hopefully ) her2 negative....and wont be able to know about lymph
nodes.

Please ladies, can you evaluate on parts of my post or all of it

You guys really help not to make me feel alone...I am on disability and have
other disabilities, and housebound most times. I have no kids or siblings, my
dad passed 8 yrs next mth....same mth my birthday april 26. I live with my
mom and poor woman now they found something in her kidneys...we only have
long time family friends, and some cousins, other family is in italy. I have
a few friends from a disabled room and some i speak to on phone. I am lonley
and feel alone though for some reason.

Please stand by me, wish I could huggg you all....you all seem so nice.

God bless you!

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

though you have cancer it was caught early. Now take my grandmother as a case example. She had a masectomy at age 60. At that time chemo and radiation were not even given. I am not sure whether they even took lymph nodes back then either. She survived 15 years and then got a different cancer in another part of her body. It was not related to her breast cancer at all. Despite getting a second cancer she survived to age 80+. This is before all the chemo and radation even existed. Well I guess it existed for her second bout of cancer.

So even though your doctor took all the nodes, (and as stated previously this was what all surgeons did back in that day), your chances of survival has the POSSIBILITY of being at least as good as my granmother's when you consider that she had no chemo or radiation the first time.

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