ibc awareness - diagnosis hard to detect

To keep information about Triple Negative Breast Cancer together and easier to access.
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liv
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Re: ibc awareness - diagnosis hard to detect

Postby liv » Sat Aug 25, 2012 1:51 pm

thanks after bc :hugs:
lots of different strategies.. all wanting the same outcome :D

After BC
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Re: ibc awareness - diagnosis hard to detect

Postby After BC » Fri Aug 24, 2012 5:32 pm

I was in the opposite situation as you. My BS pushed me to have immediate reconstruction. She was so concerned with my body image because I was so young.
I said no way... fix my cancer first. I guess doctors are people too and they make assumptions about who you are. Sometimes you have to straighten them out and tell them where your head and gut is at.
The way I saw it, my life is more important. Being diagnosed with cancer was really hard and I would be devastated if my treatment was stalled or compromised because I had an infection from the recon or something.
That was over a year ago and I recently talked to my BS she also said she was happy with how everything turned out and wouldn't want to have done anything differently.

Your BS sounds like a really smart person for not taking risks.

Recon is always going to be around - you can do it anytime.

Hit the cancer on the head now and fight it with all that you have now - triple negative is aggressive and you don't really want to look back and have any regrets

Take care of yourself liv~
Dx Sep 10, Triple Negative, neoadjuvant chemo 6x TAC. Left breast mastectomy 0/5 lymph nodes. Complete pathological response. response. Currently having 26xrads

liv
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Re: ibc awareness - diagnosis hard to detect

Postby liv » Tue Aug 21, 2012 4:03 pm

after bc :hugs:

sorry to hear yr a trip neg too but nice to know yr doing great & thanks for being there :heart:

an update...
after seeing breast surgeon last tuesday have changed my mind and will wait till after rads.

he said i would be a fool to take any risk of infection from the expanders,
that being not being able to have radiation or chemo immediately after mastectomy considering the aggressive ibc trip neg.

guess he was just saying politely, maybe u r not going to get too many chances :jail:

common sense must prevail sometimes! :gappygrin:

After BC
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Re: ibc awareness - diagnosis hard to detect

Postby After BC » Mon Aug 20, 2012 11:25 pm

Hi liv, Im in the midst of having my implant recon - im now at the expanders stage. I have had chemo, LB mastectomy, 6 weeks of rads previously. I saw 3 different plastic surgeons and all three recommended I do a flap for my recon. I was very against a flap as I thought it was too invasive and have postural problems - didn't want to lose a muscle. Also after 6 weeks of rads my skin was relatively unscathed - slight rash but nothing major. I took really good care of my skin and took a lot of vitamins and antioxidants. Pm me if u wan some tips. Anyway, the PS that I chose had a last minute change of mind and asked me whether I wanted to do a new procedure where they inject fats from ur tummy into the radiated skin. The theory is that stem cells from fats will rejuvenate the skin and create new blood vessels. So I got a free lipo and after a month I noticed my mastectomy scar has softened. My PS was skeptical and did not see a drastic change but thought my skin was good to begin with anyways. So here I am with expanders and all is going very well.

To answer ur question about expanders I got my first fill in march 50mls each time - time between fills is 1-2 months. My last fill was a month ago and as u can see My PS likes to do this SLOWLY. Which is great. Before mastectomy I was an a cup. I think I'm a small b cup now. It's amazing how the skin can stretch. My only complaint is that my left pec is tight and I have to keep on stretching on a daily basis. But it was tight even b4 the expanders and is due to the radiation.

Sorry for the long post. Hope this helps.
Dx Sep 10, Triple Negative, neoadjuvant chemo 6x TAC. Left breast mastectomy 0/5 lymph nodes. Complete pathological response. response. Currently having 26xrads

liv
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ibc awareness - diagnosis hard to detect

Postby liv » Wed Aug 08, 2012 5:47 pm


Inflammatory Breast Cancer..Triple Negative

ibc...."Peau d'orange"
is a French term that means "orange skin". Its very descriptive since the skin of the breast in these cases actually looks very similar to the outer layer of an orange that is pealed off. The pores are accentuated forming deep pits in the skin that are like orange skin.

more education needs to addressed for Inflammatory Breast Cancer.......my breast was like an orange red orange and pitted looking, 5 different professionals including 2 top breast cancer specialist looked at my breast and not one of them picked it...classic symptom for ibc is pitted orange look.. "Peau d'orange"
and im pretty sure if i was diagnosed earlier it would not have spread to nodes in chest or the surface of breast.
_____________________________________________________________________________________________________________

my journey up to now had implants silicone tear drops put in overseas january this year.. were gorgeous.

hard lump appeared feb, off to gp, put on antibiotics, 1 month still lump, sent for fna, they wouldnt do it as breast like a red hot balloon and too swollen with pitted orange outer skin, back to gp, more antibiotics & sent for ultrasound, results large hemoglobin, told no bc, again more antibiotics.
not clearing huge red pitted balloon breast now referred to specialist at mount, surprise surprise...told>> severe infection.
another dose of antibiotics, months of antibiotics back to my gp who admitted me to rph that night cos it was about to burst.

on admission at rph specialist had a look, diagnosed >>severe infection from implant... sent me down for ultrasound and same time booked me to go under the next day to have a look at infection and if really bad he would take implant out..I thought no probs can put another implant in later stage.

later that day they finally decide to take biopsy fna...breast dr returns.. oh bad news.. got results from the biopsy, its not an infection u have ibc and its triple neg...blah blah blah.

anyways thats why im here with all u luvlies. :hugs:

now last chemo next monday, then full mastectomy then 5 weeks of rads.

so ive got this lovely implanted large c cup and want to match my not so well little sick darling breast :heart:

have read many times that they dont like to use implants after rads.

has anyone had implants after radiation?

and what about the expander things, let say i ignore what the dr says which i will :wink: and opt for implants,
i imagine they will have to go right to chest wall with mastectomy, my question is will they be able to put the expanders in then?

dont envisage i will have much skin left as only a b cup now and nipple and surface had cancer, wont be much left to work with.

after expanders do these get filled over a long period of time until stretched enough, then do that take out the filling to place implant?

and apart from tattooing ive read they can create a nipple from other bits, vagina, inner ear etc?

ideas thoughts appreciated :heart:


UPDATE
after seeing breast surgeony i have changed my mind and will wait till after rads in regards to recon.
he said i would be a fool to take any risk of infection from the expanders,
that being not being able to have radiation or chemo immediately after mastectomy considering the aggressive ibc trip neg.

guess he was just saying politely, maybe u r not going to get too many chances :jail:

common sense must prevail sometimes! :gappygrin:
Last edited by liv on Sat Aug 25, 2012 2:02 pm, edited 1 time in total.


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