anybody else stage 111 because of skin penetration?

ctm1

I'm two weeks post op from bmx and tram flap reconstruction.  Went to my surgical oncologist last week to go over the final pathology report.  While no nodes were involved, what was originally thought to be 3 smaller tumors turned out to be one large one, 5.2cm and "dermal lymphatic involvement" was present.  Is anybody else of these boards staged at 3 because of skin involvement?  It seems most people are here because of node involvement.  I have appts next week with both a medical and radiation oncologist.  Wanted to hear from anybody with been there/done that experience.

Thanks!

Mary

HollyinMich

Hi Mary, sorry to hear that you've joined the ranks of a stage III diagnosis.  I have a very similar diagnosis and mine translates into Inflammatory Breast Cancer hence the stage IIIb diagnosis.  However, at the time of my dx not only did I have two tumors present I also had the physical characteristics of IBC, i.e. swollen red breast with nipple inversion that was hot to the touch and orange peel appearance to the skin.  So basically they knew right off the bat that we were dealing with a stage IIIb cancer.  I would talk to your oncologist about the possibility of IBC, the dermal lymph involvement lends me to believe that it might be a possibility and all IBC dx start off at a stage IIIb.

kathleen1966

The size of your tumor alone can put you in stage III with no lymph nodes.  I can't remember but it may be either over 3cm or over 5cm.  I had a rather small tumor but it managed to go to four nodes.  And that one extra node (4 instead of 3) put me in stage IIIa.  I hope that you are very, very happy that your tumor has not gone to the nodes! 

ctm1

Holly, I will talk to the dr about that, thanks! There were no external signs of skin involvement so I was pretty shocked when it was on the path report.

Kathleen, yes, I am happy that it has not gone to the nodes! The magic number is 5cm, and it is only 5.2cm, but I think because there is also skin involved that is what changes it from IIIa to IIIb.  I know not a big deal, but a difference all the less.

Mary

HollyinMich

Mary, no problem!  If there were no outward signs of skin involvement then you might have caught it before the symptoms appeared, which is a good thing.  IBC by definition is cancer in the dermal lymphatics of the breast.  It's also treated very aggresively since it's an aggresive form of BC.  So if there is any possibility that it may indeed be IBC I would push for an answer on it.  Here's to hoping that it's not, because the chemo treatment sucks!  If it is, have hope.  My chemo regimen prior to my BMX wiped out all the cancer cells; all of my post-op patho results came back clear.  So, even though it sucked going through it, it was well worth it!  Wishing you all the best!!

imbell

Here is a definition that may explain:

The Lymphatic System: The Dust Broom of the Body Did you know that you have a Lymphatic System? The Lymphatic System? What's That? The Lymphatic System, similar to the Circulatory system, is made up of thin tubes, called lymph vessels that branch throughout all parts of the body (except your eyeballs, hair and nails) mostly just below your skin surface. Along this network of vessels are groups of small, bean-shaped organs called lymph nodes. Many people mistakenly call them lymph glands. When you go to your doctors for a physical, that is what they check first, besides your heartbeat. If your lymph nodes are swollen, in your neck below your ears or in the groin area, that will indicate a sign of infection in your body

imbell

Will try again:

The Lymphatic System, similar to the Circulatory system, is made up of thin tubes, called lymph vessels that branch throughout all parts of the body (except your eyeballs, hair and nails) mostly just below your skin surface. Along this network of vessels are groups of small, bean-shaped organs called lymph nodes. Many people mistakenly call them lymph glands. When you go to your doctors for a physical, that is what they check first, besides your heartbeat. If your lymph nodes are swollen, in your neck below your ears or in the groin area, that will indicate a sign of infection in your body

jennyboog

I was IIIc due to tumor size and LN involvement but also b/c of IBC.  It had cleared up due to chemo tx so, my BMX path report said it was all clear.  If you had no physical characteristics of IBC & did BMX before chemo, maybe you were on the verge of it.  I would guess that means IBC since it mentions dermal but if the margins are clear that's a good thing with IBC.  Sorry you had to join us here, congrat's on the 0 nodes!

YATCOMW

I did not have IBC and it had gone to my skin.  I too was shocked as I had no outward appearance of such.  I know several other women that had it also.  It used to be of concern and pushed you to IIIb however there have been some follow up studies that showed that skin involvement alone (not IBC) posed no greater risk.

I hope this helps.  I am almost 7 years out from IIIC.

Jacqueline

geek

YATCOMW, Congrats on 7 years

 

My mom has skin mets and she just finished 6 rounds of chemo.  The doctors say that it did not do anything to help the skin.  Are you 7 years out living with skin metastasis?  All of this is confusing, and the doctors don't seem to actually know what to do either (so reassuring).  Thank you for any help. 

sugarplum

I had dermal involvement but also 10 positive nodes - the tumor size was impossible to determine as it was multi-focal throughout the breast. My surgeon removed 20 nodes and said she "scraped it off" the inside of the skin in order to get a (very THIN) clear margin. I will hit 5 years next month - just got back from a Komen breast cancer conference yesterday and the primary message there seemed to be "EXERCISE" and "EAT HEALTHY" - I am not overweight but they said even if you are, you can offset that risk by doing those two things. (I always question why I got it in the first place, since I've been dieting & exercising since 1985 - oh, well.) 

All the best to you in your ongoing journey...

Julie

   

roseamy

I had skin involvement this was where the tumour (mixed ilc/ idc) had started to fix/extend itself into the skin, it had not broken through and when I had my mx they removed a lot more skin than normal.

I am 2 years ned.

good luck

hope123108

Ladies,

I am fearing skin mets right now.  Been to oncologist and dermatology.  Nobody is on the same page....can you provide me with how the skin mets presented or are now.  I have gotten answers from hives to rashes to see an allergist.  So unsure of all these new sightings. Thankful you ladies are all here but sad to say i learn more from these boards the high dollar Dr.

Blessings

Hope

jennyboog

Hi Hope, I'm sorry your in this scarey time right now and I feel the same way...I learn more from bc.org than any dr. I've been too.  In fact, I ask questions about things b/c I read about them on bc.org, I love this place!  I can only tell you what my IBC looked like so I don't know if it will help but here we go.  Between doing my biopsy and starting chemo, I developed a red area about the size of baseball.  It was hot to the touch, I put a baby forehead thermometer on it once and it was 103 degrees. I never developed the orange peel skin and once I started AC it cleared up but it was always hot and burning.  It looked like I had an infection.   There is a website www.ibcresearch.org, they have pics and descriptions of other IBC.  I hope this helps & I hope you can find a dr. with some real answers. Keep us informed, we're here.

hope123108

jennyboog,

thank you for your reply.  i had both breasts off 2 years ago.  However lately i keep getting these pimples, bug bites, rashes, red spots...something and it makes me so fearful that they are skin mets.  Especially when i cannot get a positive answer.  Maybe the allergist will be able to scrape some skin.  They are only on the front side of me nothing on the back.  That is scarey also. Hope all turns out well with you and you are healthy.  Again isin't so amazing the info on these boards, i believe most of these women before i believe the Dr.  sad to say but they have been their, did that. Many conversations that would even come up in a dr. office never mind answers and conversation regarding some issues that one goes through.

Love to you and your family,

Hope

geek

Hi Hope, 

My mom had a "rash".  The Dr.'s told her to take some benadryl.  A year later, she had a mammogram, a mastectomy ( 2 tumors,ILC, her2 and er positive).  And the "pimples" popped back up around the incision.  She had a biopsy done, and it is skin mets.  They said it's not IBC, but skin mets.  They say surgically removing it will not help...radiation "may" help, but not much.  The six rounds of chemo looks like it did not help...because they found microscopic bits of cancer in different spots in her skin (how they tell that, I do not know).  I would highly recomment a biopsy  be done on the area that looks like pimples or a rash (not trying to scare you, just urging to be proactive...as I am diappointed that they dismissed my mom as having a rash).  I don't know what's next for my mom...wait and seeing sounds like giving up, but I am no expert.

 Love love love to all 

HollyinMich

Hi Hope,

Here is a link that has some good photos of skin mets.

http://www.ibcresearch.org/pictures/skin-metastasis-skin-mets/

I also had a few skin mets at dx but they cleared up with chemo.  Mine looked very much like these but were red and itchy.  Best wishes that your symptoms are not mets!

Holly

jennyboog

Hope,

Be proactive, it's the only way you can get answers.  The site I sent you spoke of skin mets and itchy bumps with some pics.  I'd keep on till I got results, we have to be this way b/c most dr's aren't.  My mammo was read wrong and I kept going to the dr. b/c I knew something was up.  Best wishes, my prayers are with you.

hope123108

Ladies,

Thank you all for you honesty and advice.  I have studied the pictures on the above sight but mine are not white and i cannot actually feel a bump or lump.  Red like appearence and sometimes leaves a stain (brown or dis-color).  They are very itchy and somewhat below my scar line.  To boot some of my blood work is high or low.  Always searching for adivice and stability.  I cannot remember if i mentioned i was TN grade 3, 4cm tumor...at 42 young.

Stay in touch, love and good health to you all,

Hope

IllinoisNancy

I am going thru my second breast cancer which is classified as a "recurrence" of ILC as a result of two biopsies.  It is not IBC nor is it mets.  It is simply the same type of cancer I had the last time, ILC, ER+, PR-, HER-, BRCA was negative along with another genetic test called PALB2 Gene Mutation which is new and expensive.  My Onco was thrilled that my insurance authorized payment.  It showed up as 3 small pink bumps on the breast skin which were smaller than misquito bites.  I also had two small tumors show up under the nipple and they are not pagets disease.  I have had MRI's that did not show the outside tumors and a PET scan which did not show anything except for the ones behind the nipple and a mammogram which was all clear and did not detect anything wrong at all.  If it had not been for the BS's routine yearly checkup, no one would have detected my cancer.  I had the oncotype dx the first time after a lumpectomy and it gave me a score of 9 which is very low.  I had a 96% chance of not ever getting it back.  I had 34 radiation treatments followed by 4 years of Tamoxifen which failed me.  I also  had a test after one year of Tamoxifen which confirmed that I was metabolizing it properly.  I'm not over weight, I breast fed my two kids that I had in my 20's for one year each.  My mom is 90 and has never had BC nor any other kind of cancer.  I don't fit the profile for BC but I sure got it TWICE. 

 My advise to you is to ask a lot of questions and let them test you for everything.  Also make sure you have an experienced breast surgeon examine you carefully.  Then you will know what you have and how you need to be treated.  I am going thru 20 weeks of chemo and my last one is tomorrow.  It is all bad but it beats the alternative.  Good luck!

Nancy

jennyboog

@ IllinoisNancy...I'm so sorry, sending cyberhugs your way and praying you never have to deal with this mess again.

Tundra

Hi there,

I had skin involvement as well. I was diagnosed with IBC. I have a mass, node involvement, and the biopsy said IDC, but basically my breat was swollen and red (not a pasing rash, but red for about 2 1/2 months) so therefore I was given a clinical diagnosis of IBC.

Best of luck with everything!

mammalou

They only found a small amount of dermal lymphatic involvement and determined that I did not have ibc. Does even a small 1 mm found in the skin make me a stage 3. My doctor has never said and this has been nagging at me.

LouLou40

I just assumed I was stage 2 based on the size of my largest tumor 2.1cm and 2 positive nodes, have never discussed stage with my medical team, but I did have 3cm of subutaneous margin invovement, BS told me he removed all visible cancer and involved skin, my tumor was just below the surface of my skin and I did have puckering - Also had a 1.5cm deeper one.

What I've read is that skin involvement that's not inflammatory dosen't increase recurrence risk and is possibly over staged at stage 3, my treatment was the same regardless, so not hung up on the staging

mammalou

Can we still be a Stage II then?   It feels so much better.