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Topic: IBC? Or coincidental symptoms?

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Apr 21, 2012 04:19PM - edited Jun 2, 2015 01:21AM by upatnight

upatnight wrote:

Hello, I am so worried...my head is spinning.

About me: 40 yrs old; mom of adorable 4 year old; feeling great! ...until this

History: Breast cancer runs all throughout my maternal line; I see a breast specialist regularly because I am so high risk. Have had a few roller coaster rides...lumps, biopsies, aspirations... Never cancer. But what I am about to share is by far the scariest.

Note: 3.5 months ago, I underwent my annual mammo and ultrasound. No issues.

Left Breast, my story... All only in the left breast.

Past 3 months - sensation of nipple discharge 3x per week, rarely did I actually see a 'water' spot on my shirt.

1 month ago for 10 days - pain behind breast where it attaches to chest wall... Stopped workouts; went away

Last 2 weeks - surging pain on right side of left breast

Last 10 days - itchy breast; itchy nipple; nipple tenderness; needle stick feeling in nipple hole began (itch not isolated to right side of left breast)

6 days ago - 2 bug bites appeared right side of left breast

--at this point, I had googled 'itchy' breast and feared IBC but the bug bites made me relax...although I knew it was odd that I itched in more locations than the bug bites ... I also thought maybe one of my 4 yr old's kicks to my chest had caused the pain

5 days ago - more bug bites on right side of left breast (about 10 total)

4 days ago - noticed breast was slightly (almost not noticeable except that nipples did not align) larger than the other; breast feels heavy, full like nearing period ... Strange to feel this only on 1side

3 days ago - noticed 'corn rows' on right side (not visible by looking in mirror...can barely feel them...can see them by shadowing breast and taking flash photo) ...not present in other breast areas or on other breast...only in area of bug bites

2 days ago - saw breast care specialist which resulted in: normal mammo, normal ultrasound, doc said bites look most like hives to her; said does not look like IBC but can't rule it out; on antibiotics (cephaflexin), hydrocortisone, Benadryl; see doc again in 7 days; doc did not touch breast and don't think she saw the 'corn rows'... Are corn rows 'ridges' that I have read about?

1 day ago - bug bites look more like rash as some have grown together...as though irritated from scratching

Currently... Tender nipple, itchy nipple, nipple is at attention, itching of breast is a little less frequent, less occurrences of nipple needle sticks, breast still slightly swollen, bug bites still there and a little irritated, Benadryl lessens irritation but by no means looks like it is knocking out the rash, hives, whatever it is; corn rows still there but not overly apparent until close inspection

Scared! No detergent, perfume, medication, environmental explanation for breast rash.

What do you think? All I can think about is my child.

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Apr 22, 2012 02:22AM - edited Apr 22, 2012 02:53AM by upatnight

Initial - called the doctorThe day I called the doc 4/19/12
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Apr 22, 2012 02:22AM - edited Apr 22, 2012 02:53AM by upatnight

3 Days into MedsDay 3 of Meds 4/22/12
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Apr 22, 2012 02:24AM - edited Apr 22, 2012 02:54AM by upatnight

3 days into Meds - Breast Texture barely visible by naked eye but caught on cameraShows 'corn rows in skin - barely visible to maked eye
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Apr 22, 2012 02:26PM ateepay wrote:

Have you seen a doctor who KNOWS what to look for with IBC?  There are IBC clinics around the US where you can have IBC ruled out, which you might want to do.  A mammogram won't do that, but a biopsy will.

Hoping this is 'just' reaction to a spider or insect bite.

Patti
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Apr 22, 2012 06:43PM - edited Apr 22, 2012 07:22PM by upatnight

Today after sharp pains in my spine, I suspected shingles despite the fact that I never had blisters or anything resembling the many picture of shingles on the internet.  I went to the urgent care center.  I was unaware but told I had fever.  That made me happy as it implied infection.  I want a breast infection and not cancer.  The doctor looked at me and said it was Shingles.  I made him check again two more times and he was so 100% positive that it was Shingles.  But to prevent worry, I had him do a Shingles blood test.  Results are in a few days.  I am still following up with my breast care specialist on Thursday and have added Valacyclovir HCL 1 Gram Tablets 3x per day for 7 days to my meds list.  There have been no changes in my symptoms other than nipple needle pricks and itching has worsened and I now have stabbing back pains.

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Apr 22, 2012 06:49PM mrsnjband wrote:

Shingles aren't fun but hoping it's not IBC.  Definitely follow up with your breast specialist. If you have any doubts have biospy done.  Sending love & support. NJ

Norma June, Bi-lateral MX 2008, Bi-lateral DIEP 2011 Dx 1/10/2008, IBC, <1cm, Stage IIIB, ER-/PR-, HER2- Chemotherapy 1/25/2008 AC Chemotherapy 3/10/2008 Taxol (paclitaxel) Chemotherapy 5/29/2008 Taxotere (docetaxel) Surgery 7/10/2008 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 8/11/2008 Surgery 8/15/2011 Reconstruction (right): DIEP flap Surgery 8/15/2011 Reconstruction (left): DIEP flap Surgery 12/12/2011 Reconstruction (left)
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Apr 22, 2012 07:30PM - edited Apr 23, 2012 08:11AM by upatnight

I have been reading up on Shingles and now realize that a lowered immune system is the trigger for shingles reactivation.  I am not sickly, on meds that would lower my immune system, etc Over and over again, I read that cancer lowers the immune system and those with cancer often get Shingles.  I think back to so many people on these blogs who commented that their IBC was misdiagnosed initially as Shingles.  Now I wonder.  Was the Shingles really a misdiagnosis?  Or was it a correct diagnosis... meaning there really was shingles which could have been triggered by the not yet found cancer????  I will not stop until I am comfortable.  The doctor today offered me a scond medication that would reduce inflammation and help in my shingles recovery.  I asked if it would reduce the breast swelling and he said YES, so I declined it out of fear that it could mask a cancer symptom (swelling in the breast).  He agreed that declining it was a good plan.  I look forward to seeing the breast specialist on Thursday and really hope my breast returns to normal size with this Shingles medication.  

Thanks to those of you who have posted.  I am truly truly truly grateful to have you here with me. 

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Apr 22, 2012 08:14PM Kicks wrote:

Doesn't look like IBC to me - definately not like mine was I've never seen Shingles so don't know if it looks ike it or not.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Apr 23, 2012 08:15AM upatnight wrote:

Sometimes the breast feels warmer than the other but at other times not.  So I am guessing it's all in my imagination when it does feel a little warmer to the touch.  I would be much more comfortable with the Shingles diagnosis as a standalone cause for my problems if the breast was not swollen and the nipple and other side of the breast (away from the Shingles) were not so ferociously itchy.  3 days until I see the breast care specialist again; Day 2 of my Shingles virus meds.  Time will tell.  
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Apr 23, 2012 09:39PM chester2010 wrote:

It's good that you are getting things checked out.  Shingles are very nasty -- but better than cancer..... try not to let your imagination run away with you, I know it's not easy when you're worried. Keep in touch and we'll help when we can.

chester2010 Dx 12/10/2009, IBC, 6cm+, Stage IV, 37/37 nodes, ER+/PR+, HER2-
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Apr 25, 2012 08:27AM - edited Jun 2, 2015 01:29AM by upatnight

Today is day 3 of having to bandaid the nipple and bind the breast to get through the day.

From what I read, my problems are caused by a dermatology issue (other than Shingles), Shingles, or Breast Cancer.

Tomorrow I see the breast care specialist after 1 week of antibiotics which have not helped at all. I don't want to be in a position to delay biopsy or anything because the breast care specialist says I need to see a Dermatologist or thinks that I may have a dermatology issue (ie wait and see). I am not a wait and see kind of girl. : ) Therefore I saw a Dermo today who suspected shingles.

I am in so much pain (mostly the nipple).

Thanks to all.

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Apr 25, 2012 07:11PM - edited Jun 2, 2015 01:32AM by upatnight

Shingles back/spine pain is so bad tonight!

I see the breast care specialist in the morning.

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Apr 30, 2012 01:31PM Claudia413 wrote:

upatnight,

As a 4-yr survivor of an IBC diagnosis, I am awaiting another update from you. I certainly hope what you have is confined to Shingles and is not IBC or Paget's disease of the nipple.  Sending big cyber hugs your way. 

Claudia Fauver (IBC Class of 2007) Dx 8/10/2007, IBC, Stage IIIB, 0/3 nodes, ER+
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Apr 30, 2012 05:00PM - edited Jun 2, 2015 01:37AM by upatnight

I had some redness that alarmed me but it went away. I think it was a reaction to my itching or tape I was using or the bandaids etc.

I went back to the breast care specialist (surgeon) and she wants to see me back in 30 days.

I can rationalize nipple pain, the rash, and any other symptoms to Shingles but not the breast swelling or the itching away from the rash.

The breast has continued to swell slightly. I now have a Friday appointment at MD Anderson's undiagnosed breast clinic. I am so scared!! It's been 25 days since the Shingles first appeared (although I did not know what it was at the time) and my breast remains swollen and itchy all over (not just at the rash site). That is the heart of my fears! Hugs to you all for being there for me on this site.

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Apr 30, 2012 08:02PM chester2010 wrote:

Upatnight:  Sorry to hear you have been going through all this turmoil.  Shingles is certainly a very nasty virus and I hope that you can get final confirmation that it is not IBC. 

chester2010 Dx 12/10/2009, IBC, 6cm+, Stage IV, 37/37 nodes, ER+/PR+, HER2-
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May 6, 2012 09:14AM - edited May 6, 2012 09:14AM by upatnight

MdAnderson Undiagnosed Breast Clinic (Mays) was amazing.  They found quite a few things that my current breast care specialist had not found but I am cancer-free.  Apparently Shingles on the breast can make your breast swell, can cause ferocious itching even where there is no rash, can give you symptoms similar to Paget's.  I feel blessed and relieved.  And even moreso, I feel thankful for those of you who took time out of your day to let me know you were out here and provided comfort to me.  Thank you.  SINCERELY.  

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May 6, 2012 08:40PM Faith316 wrote:

That is great news!  Now you can put your mind at ease.  Thanks for letting us know1

DX 4/08 IDC, ER-, PR-, HER2+, IIB, Grade 3,lumpectomy,2/8 nodes,4 AC,12 wks.Taxol,Herceptin,30 rads. DX IBC 6/09 while still in treatment. Now Stage III. 6 mo. of Xeloda done, still on Tykerb. Uni-mx & another node dissection 2/4/10.
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May 30, 2012 02:28PM Lyly1 wrote:

Hello all, my name is LyLy and just turned 37 today. I am a mother of 1 daughter who will be 10 years old in a couple of weeks.

Yesterday I was trying on a new bra I purchased and noticed a red/pink blotch or spot on my left breast right above the areola. I would say that it's about the size of half dollar, maybe bigger. The area feels hot, sore and a bit stiff/hard. I googled my symptoms and the farthest thing from my mind was that the word "cancer" would appear. I am a huge researcher and read anything and everything on IBC and it made me worry big time. I told my sister about it and she got me an appointment today to see a breast surgeon. The results of that appointment was exactly what I read on the Internet about misdiagnosis, the doctor said its an infection and gave me rx for antibiotic. My mind does not feel better about that, he said that he felt what could be a nodule on the "infected" breast and my right breast hurt when he examined it. He also said "that does not look like ibc", which did not sit well with me since it can not be detected just by looking at it, mammogram or ultrasound. I've compared pictures and symptoms online and I must say, I have quite a few ibc symptoms. Any thoughts from ladies who have been misdiagnosed or know of anyone?

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May 30, 2012 03:51PM upatnight wrote:

Hugs to you.  I know you are worried but try not to worry.  I just went down your road and all turned out fine for me.  Here is my advice...

1.  Take the antibiotics like you are supposed to... no adult beverages to lessen their effects, etc.  Do just what the doctor has asked you to do all while trying not to worry.  

2.  I ended up having Shingles.  Check your back to see if there is anything there.  

3.  Remind yourself that infection is far far far more common than IBC.  Even infection areas can be warm to the touch.   

4.  Maybe that new Bra of yours had something that triggered a reaction on your skin.  

5.  Remind yourself that if it is IBC, you caught it as quickly as anyone could and you went after medical care as quickly as anyone could.

6.  Make sure you do go back to the breast care specialist at the 7 day mark and if it's still there, you can ask for what you want and what you want to know...

a) Have you seen IBC before?  b) Can we biopsy it right away?  

7.  Think positive.  And know that many people out here are here for you.   

8.  Even if there is a nodule, not all nodules are bad.  

9.  Don't read anything else about IBC on the internet.  You can come here for support.  But MAKE YOURSELF stay off the internet otherwise.  You are now under medical care and will get whatever this is taken care of by your current breast surgeon on by reaching out to another professional.  The internet will only cause you agony.  I googled shoulder blade pain the other day and up popped heart attack.  The internet is a wonderful tool but also has a way of making us crazy with worry.  You used it and found a possible serious issue which you are now addressing (as you should).  So no need to read it further and increase your worry.  

Hugs to you.    BIG hugs!!!!

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May 31, 2012 08:47AM Lyly1 wrote:

Thank you so much....your post really helps. You are right, the Internet can drive anyone crazy and make you worry. It can be anything at this point. I told my husband that I will give the antibiotic the benefit of the doubt and let it do what it does. It's only day 3 since I discovered it, no changes yet. But I am hopeful that it will start clearing up. At least i know what to look for and if it is IBC, like you said...i did my research and know where to go from here. I'm glad I posted here. I much rather read everyone's post than drive myself crazy on Internet research. Thank you again :)

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Oct 3, 2013 09:00PM GreenSunflowers wrote:

Thank you for sharing all of that! I too have believed my symptoms to be something like IBC but after 3 weeks the local cancer center thinks it's shingles. I will let the anti-virals do their thing and stop googling IBC. It hurts so much but I have no rash. The cancer center didn't order a blood test but my primary's doing one tomorrow (per my request). This is one test I pray comes back positive. Thank you again - it's good to read about a case where it turned out to actually be not the worst thing possible. Bless you!

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Jul 28, 2014 12:31AM Silversteam wrote:

Hey guys, I'm Silver. So I just recently turned 19. And a day or two after the spots appeared on my right breast my left is just fine. Now, I thought maybe it was where I hadn't got a chance to wash my bra and I'd been sweating a lot. So I changed bras, took a shower and washed well.

But it didn't help. Then the shooting pains started. The pain runs from the edge if my armpit down into my nipple. Sometimes it feels like I leaned against a live barbedwire fence. The spots and the nipple do itch pretty bad but here's my issue. If it was just itchy that'd be ok.

But if I scratch it sends unbearable searing pains up into my shoulder and through the right side of my chest. It's not fun at all..the marks haven't gotten smaller even when switching to a new bra that's been washed in hypoallergenic detergent...some that had been individual earlier in the month have spread together. The breast is swollen and I'll catch myself walking around cradling it with my right hand because running into things hurts really bad >~<. 

..a little bit of history here. Cancer runs rampant in both sides of my family including breast cancer...especially breast cancer on my mothers side. No, I'll admit I haven't been to the doctor about it yet.. Or the OBGYN...frankly I'm terrified to go. I've never been and I'm really uncomfortable thinking about it. I'm going to give the spots another week and if it doesn't go down or gets worse I'll go..has anyone else had the severe tenderness in the spots? Can a young person get shingles? I noticed a lot of people mentioning IBC.. I'll be honest I don't know what that is. If anyone would care to explain it would be a great help. I hope anyone with these same problems don't have anything severe.

I hope to hear from you all soon,

Silver

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Jul 28, 2014 04:35AM Moderators wrote:

Hi Silversteam, welcome to the boards! Were so sorry to hear you are in such pain. You mentioned that you are afraid to see your doctor which is something many people feel. Is there maybe someone in your family who could go with you?

Kind thoughts

The mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 28, 2014 11:15AM - edited Jul 28, 2014 11:19AM by Kicks

Silversteam

SEE YOUR DR!  Only your Dr can tell you/find out what might be going on!  NO one here is capable of doing that.

There are so MANY poasiblities of what you are  dealing with.  Especially at your age, IBC is highly unlikely - it is rare with being only between 1% - 5% of ALL DXd BC and even rarer among those of your age.  Possible yes, but - - - -.  

Whatever is going on, the sooner it is taken care the better.  Ignoring an issue is never the way to appropriately handle it.

added: Starting a new thread will usually get you more replies than pulling up an old one.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Aug 17, 2014 02:59PM Silversteam wrote:

big sigh or relief is was in fact a mild case of chicken. My mother got chicken pox as well about the same time so I'm thinking she started the flair up. Some antibiotics and I was good to go. It just had be very worried is all. 

Both side of my family has many kinds of cancer and so I panicked a little more. I was informed to keep an eye out. I have a very low immune system and so I was told because of these reasons I was at a higher risk to get a form of BC so thanks everyone :) also  next time I will start a new thread. Thanks Kicks, for the advice. :)

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Aug 17, 2014 03:40PM Tomboy wrote:

Glad you are good to go, silver! good for you for being brave enough to go to the doc. i didn't know that about not pulling up an old thread, as a matter of fact, i was told that newbies start way too many new threads, instead of using the search function to find the appropriate thread. that often a new thread will languish, while an older thread is always available to anyone at any time. Don't really know one way or the other though.

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Aug 18, 2014 03:12PM Ashworth1986 wrote:

Hello everyone, I'm so nervous so a apologize ahead of time for the run on sentences and sounding robotic! 

I'm hoping someone can shed light on my symptoms. I'm a breast feeding mother of a 17 month old. A few weeks ago I found a small round lump on the outside of my right breast, just below where the breast meets chest. It was very painful and there was a hard section just below the lump. I thought it was just a clogged duct or mastitis so I massaged it, used hot water and nursed a lot. The hard section below the lump started to go away but I developed a hard tube coming from the lump that extended down my breast instead. The small lump eventually disappeared but the hard tube then developed into multiple tubes and made the inside, skin of my breast thick, red and abnormal looking, kind of orange peel looking(as it's described). The hard tubes disappeared but then I developed ANOTHER hard tube from the nipple extending downward towards my abdomen. That's when I thought this might be serious.(All the tubes have felt sore). So I went to urgent care, the Dr. didn't look at my breast(even though I suggested he did) but he did feel my armpit and collar bone and said it was just mastitis and gave me a 10 day course of antibiotics. He told me if it wasn't cleared after a week to get an ultrasound, mammogram, etc.... 

Now, after 10 days, the hard "tubes" are gone, my breast is not sore BUT it is still red and the skin is still thick. I have taken photos of my breasts every couple days and it does appear to be getting less red but thickness always seems the same. I am so consumed with worry. Please tell me I'm crazy and this is something other than IBC. 

Here is a photo of the hard "tube: extending from my breast, just above my mole. 

Thank you ahead of time. 

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Sep 25, 2014 04:11PM - edited Sep 25, 2014 04:13PM by jenniferand2

hello i have several symptoms of ibc i have swollen breast and orange like pitting on the bottom of my breasts purplish like looking veiny things on my breasts heavy feeling extreme pain in my right arm pit i have pain also along my ribs on the side i have little squishy bumps what i would think to be lymph back up of some kind also my right leg has lumpy knots in it at the groin area  my right vaginal lip is shrunk and not puffy  like the left side  i have had sweet smelling sweat  i am scared to death  i have had negative mammo and ultra sound and i am going in for a second opinion i am scared real bad i also have masses in both breast but more so in the right breast the weird thing is my left breast is more swollen then the right i have fibromyalgia so my doctor is trying to write it off as fibrocystic masses or change because of my fibromyalgia a few questions i have are the masses i feel are pretty hard they feel like they have pebbles in them the mammo says i do not have dense breast tissue i am so confused has anyone else if you think back had sweat that has smelled real sweet? i am gonna repost this in another spot also but i am very concerned i know you cant give a actual diagnosis but does this sound very much like ibc or am i worrying about something that may be nothing sorry this post is so confusing  i am beyond words  also i just finished around of z pack and no change my white blood cell count is low so i do not believe it is an infection.. please help me anyone any advise  would be great  could all these things i am describing be nothing to worry about like something non cancerous i have also had a total hystroectomy so no woman plumbing at all that happened in 2011

a massive wreck
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Sep 25, 2014 10:31PM Kicks wrote:

IF everyone who decides they are IBC based on a' swollen breast and possible skin issues' were IBC, it would not be rare but would be the most common.  

You have 'something'  going on that does need to be DXd.  Of course, there are many possibilities but unlikely, based on your words, to be IBC.

"Sweet smelling sweat" can indicate diabetis - are you diabetic?  If not, how long since checked?  "Lumpy knots in groin area"?  So many possibilities that need to be checked out.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Sep 26, 2014 01:47PM jenniferand2 wrote:

it is not a diabetic thing   i am fine in that department         my sugar      levels are normal and have been fine but my white blood cell count is pretty low.. but i am getting a second    opinion thank you..

a massive wreck

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