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Member Since: January 12, 2008
Last Login: October 13, 2008
Location: Suburban Philadelphia, PA United States
Occupation:

Biography

I was dx with DCIS in my right breast and an MRI showed areas of concern in my left.   Instead of scheduling a biopsy on my left I opted for a bilateral mastectomy despite no genetic mutation.   Pathology results showed the left was totally clear.    

 

I had a bilateral mastectomy with immediate DIEP reconstruction on 1/21/08 followed by a second surgery on 1/28/08 to remove infection in both breasts.  I was back to work in 8 weeks but could have physically gone back in 6.    

 

I am very happy with my decision and the results.  I have no regrets! 

Diagnosis

Diagnosis: Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Diagnosed: December 5, 2007
Type: Ductal Carcinoma In Situ
Recurrent? No recurrence
Metastatic? No
Stage: Stage 0
Lymph Nodes Removed: 6
Positive Lymph Nodes: 0
Tumor Size: Less than 1cm
Tumor Grade: Grade 3 or high grade
Hormone Receptor Status:
HER2/neu Status:

Recent Posts by Noni

Posted in: Connecting With Others Who Have a Similar Diagnosis + DCIS (Ductal Carcinoma In Situ), Created: Oct 1, 2008 12:41 pm

Hi fellow DCIS girls

I was diagnosed with DCIS on December 5, 2007.   I started a blog to keep family and friends updated on what's going on.    For BC Awareness month I want to post one BC success story every day.   Would any of you allow me to post your story on my blog?  It can be long or short and can be as personal as you'd like.   

Pretty please?

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 17, 2008 02:26 pm

Feeling of Pin Poking

Mary Jo, I just want to mention that I had similar pain after one of my surgeries.  I described it to my PS and he looked at it when he went in for Stage II.    It was actually a few stitches that were driving me bonkers.  He removed them and things got much better.   

Altho you didn't have stitches last time, did you?

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 16, 2008 08:28 pm

anyone have trouble going back to wearing a bra?

I hate wearing bras now.   I prefer support tank tops because they are so much more comfortable. 

If I never have to wear a bra again it will be too soon. 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 16, 2008 03:20 pm

Anyone Like Their New Body Better

Yes, I like my new body better.

It's taken time getting used to it, but I like it better.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 15, 2008 06:10 pm

My insurance company asked for WHAT!?!?!?!

Held, so glad to hear this!

He's a good man, regardless of all the ribbing we give him.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 11, 2008 03:26 pm

DIEP Stage 2+

Hi All,

I had my DIEP stage 2 on June 24th and it was very painful.   I went back on August 26th for a little more work and I gotta tell you it was a breeze!

The PS gave me my final breast lift, lipo'd 1.5 lbs out of my tummy and cleaned up my abdominal incision.    He also gave me a mons-lift in the process which is actually kinda nice.

It was a quick 1.5 hour procedure and I left feeling fine.  If it hadn't been for the drugs I could have easily driven myself home.    I took one pain pill when I got home as a preventative measure and haven't taken any since.   I could have gone back to work the next day but with the breast and stomach binders and stockings I didn't feel like leaving the house in the 90 degree heat.

When I saw my PS for my one week followup I asked him why there wasn't as much pain.  He said it was probably because I was used to it. I can't think of any other reason why I feel so great.

There is one small area on my abdomen which might need to be touched up.    We're waiting to see how it heals but other than that my final surgery, which is the nipples (cherries on top) is scheduled for Nov 18th.  I told my PS that it was very important to me that all my surgeries were done before my one year diagnosis anniversary of December 5th.    I can't wait to put all the hospital visits behind me.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 10, 2008 10:59 pm

Pain after DIEP stage 2

Thanks ladies.  I was having a bad day and the pain was getting to me.  I know I need to give it more time and that things are actually going well, but it can get overwhelming sometimes.

M, I had stitches with both the first surgery and this one.  I didn't notice the first ones nearly as much.  I am going in to see my PS tomorrow.  I want him to look at everything and tell me it's all normal.  Hopefully he'll take the stitches out too. 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 9, 2008 08:43 pm

Pain after DIEP stage 2

It's been nearly 3 weeks since my stage 2 and I am still in pain and it's got me down.   My breasts have more feeling now which explains why this is harder than the first surgery.

The stitches under my breasts are red and sore.   Wearing bras in the heat and humidity is hell. As much as I'd love to stay inside and sit in front of a fan all day, it's impossible with a two year old.   So, I've been wearing support camisoles which helps a bit with the friction but the sweat still makes things icky, and I'm not healing quickly.  

The area where the drains were inserted hurts the worst.   The drains are long gone but it still feels like they are there.  I cannot sleep on my sides without experiencing pain.  I put cold packs under my armpits and use mini pillows under my arms but it's far from comfortable.

The bruising from the lipo is just about gone but my waist is still sore.   I find it difficult to twist, altho bending doesn't seem to bother me.    I'm a bit disapointed in my size too.   I can see a difference when I'm standing naked in front of a mirror but I still wear the same size.   I was hoping to lose a size or two and it's discouraging.

Sorry to gripe.  I'm just feeling down and needed to get it out.  I go back to work on Monday and I'm dreading it. 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 7, 2008 09:15 pm

YAHOO

Wonderful news!  I love the feeling of walking out of the PS' office without tubes attached to my body.   Soooo liberating!

I hope you enjoy your walk and take some time tomorrow morning to fully experience a proper cup of coffee.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 7, 2008 10:09 am

Recovery is not for babies

Regarding infections, sometimes it just happens.   When some of my tissue was dying an area of my breasts started blistering.  One blister in particular popped and blood started dripping down my side.  It was so nasty!   The nurses kept the area as clean and dry as they could but as we've all said, the rooms are kept super hot which allows bacteria to grow.   

I developed diabetes while I was in the hospital.   I was tested beforehand and everything was normal and to this day my levels are still fine.   The diabetes slowed the healing down significantly.

My PS could have gone in on day 3 and removed the dying tissue but we weren't sure how much more of it would survive, or if going in would cause the rest of it to fail.  We had to wait for it to settle down.

I wasn't told about the hot room beforehand either.  Honestly I didn't think it was necessary.   I woke up and asked why it was so hot and the nurse told me.  It made sense and I never questioned it.  Thankfully I was given ice chips.  I'll forever have deep love and respect for ice chips. 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 6, 2008 09:19 pm

Small Hard Spot

I had heard that massaging helps with hard spots and asked my PS early on.  He asked me to wait until 3 weeks.  He also suggested massaging every day with cocoa butter and I think it has made a big difference.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 6, 2008 09:05 pm

Recovery is not for babies

We had pretty much the exact same experience, only I stayed in the hospital for five days after my initial surgery. (Your post gave me flashbacks!)

My breasts were ENORMOUS when I was released and some of the tissue was already dying by day four.  My PS said he knew that some of the tissue was bad which is why he moved so much.   On day six I was back in the hospital with an infection and had emergency surgery to remove a large amount of tissue.  I've said before and I'll say it again, that was the most pain I have ever experienced in my life.

However, it's nearly six months post surgery and things are fantastic.  The PS saved enough breast tissue to create two wonderful new breasts and they are looking awesome.   I am about two weeks post stage 2 and couldn't be happier.

I hope things progress just as well for you. 

ETA: While I know that everyone raves about NOLA I just want to say that there are MANY other fantastic surgeons and facilities out there.   None of my complications was due to medical error and I would recommend my PS to anyone.   At our first meeting he told me that he doesn't offer DIEP to all patients.  He said the most important factor is their state of mind and he has turned down patients because he didn't think they could handle it.  That's a good doctor.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 2, 2008 04:57 pm

Who Didn't Have Stage 2 after original DIEP

Mary Jo, I wanted to share something I posted to my blog yesterday.

One more thing I wanted to add: when Dr. S was looking at my chest and saying what else he wanted to fix I told him I thought they were perfect. I said they looked natural like my original breasts and he said that his goal was to make them look better than the originals. I've heard of plastic surgeons who leave women looking less than human and I'm so thankful that I have someone who has higher expectations than I do. Given all I've experienced in the past 6 months it would be so easy for me to give up and settle for what I have. I'm lucky that I have a doctor who won't let me. 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jul 1, 2008 03:04 pm

stage 2

Lovelife, the pain of the lipo is totally worth it.  I can see and feel results already and am amazed at the change.  My PS said I'll lose another inch or so in the waist when the swelling goes down.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jun 30, 2008 10:56 pm

stage 2

I saw my PS this morning and he took out my drains.  It's so good to have them gone.  I have to admit that I almost passed out when he pulled them.  I've got so much more feeling in my breasts now that when he pulled the tubes it felt like I had snakes crawling around my breasts.   I nearly vomited and passed out.  He actually broke out smelling salt for me.  

I was wearing the velcro binder that they gave me after surgery.   I had it way up high almost under my breasts and my PS said I could get by with wearing support panties, like the shaper types.  He recommended Spanx and said there were several others at Penneys that work well.  The high waisted support makes moving around so uncomfortable so I'm going to give the Spanx a try.  He told me I need to wear support for another three weeks so I'm going to need a spare or two.

Summer, I seriously feel like I could go back to work tomorrow, especially now that the drains are gone.   I haven't taken any pain meds today and the pain is minor.  I am still taking a bit more time to make sure my mind is ready tho.   I took a wonderful two hour nap today which might explain why I feel so good.

I wish you ladies could see all the colors of my bruises.   It's almost beautiful! 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jun 30, 2008 03:38 pm

UNITED HEALTH CARE INSURANCE :-( HELP!!!

Sandy, I have UHC and my PS was awesome.  I am going to send you a PM.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Surgery - Before, During, and After, Created: Jun 29, 2008 10:57 pm

PS said i should wear sports bras 48 hours post-surgery....

Hi Julie, I was told to wear sports or support bras also.   I ordered a couple sleep bras online that hook in the back and zip up the front.  There are also nice ones at Walmart and Penneys.  

Something I regret is how much money I spent on bras early on.   My breasts were a dozen different sizes due to swelling and lumps.   I must have 15 bras in my dresser that I will never wear again. 

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Support & Community Connections + Get Togethers, Created: Jun 29, 2008 09:15 pm

calling all NYC, LI,NJ,CT GIRLS

I am in Philly.  Any other PA gals (or guys) want to carpool?

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jun 29, 2008 08:52 pm

Scheduled my DIEP for June 25

Great to hear from you and I'm so glad things are going well.   Those first couple of days are torture but it's well worth it in the end.

How many drains did you end up with and how much are they putting out?

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Jun 29, 2008 08:50 pm

DIEP Drains

Mary Jo, you are the speed healer!  I can't believe how quickly things have been going for you.   I had a total of 6 drains and the last one was removed at 5 weeks.   The PS didn't pull the first one for 3 weeks, I believe.

One of my abdominal drains fell out while I was still in the hospital.   I stood up to go to the bathroom and it just slid right out.   The PS didn't do anything about it but it made extra work for the remaining drain, and that was the last to go.

bilateral mastectomy with immediate diep on 1/21/08
Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes

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