DianeMarieWA

A little history - My daughter was diagnosed with multicentric BC at age 33.  She had been having symptoms for three years (!!!) before mentioning them to me.  Being a BC survivor myself and having had a recurrence in 2007, I found this news to be very distressing.  On questioning her, it seems she finally went in because the pain from her breast was radiating to her back.  Her PCP ordered a mammogram.  Because of the symptoms she was describing to me, including an inverted nipple, breast pain and possibly a rash, I was very concerned about the possibility that this was IBC.  Unfortunately, the mammogram showed multicentric BC with the largest tumor measuring 8cm!

My daughter had several tests including an ultrasound, MRI, PET scan and CT scan, and biopsies of the breast and one lymph node under her arm.  All biopsies came back showing BC.  She also tested positive for BRCA2.

Because of the size of the largest tumor, she underwent A/C and taxol chemotherapy first.  She completed that and just last week had a right mastectomy with full axillary dissection.  

The path report showed the large tumor was 8cm x 6.5cm x 3cm.  The surgeon drew a pic of the size on the back of the path report, and it is the size of an orange.  The report showed 3/20 lymph nodes positive for BC.  It also showed diffuse DCIS throughout the breast.  It also showed that the nipple was "affected".  

When asked directly by my daughter if there was any IBC the doctor replied that this was a "gray area", and although her nipple was involved she was going to call that Paget's.  My understanding is that Paget's causes itching and crusting of the nipple, something my daughter didn't really have, although her nipple was inverted.

Okay, here's my question - would the path report have identified IBC if it was there, and if not is there a specific test or process that determines when it is in fact IBC?

Thanks for any light anyone can shed on this.

A concerned Mom,

Diane

I have the Burt and White's book Binney mentioned above, and would also recommend "LYMPHEDEMA Understanding and Managing Lymphedema After Cancer Treatment" by the American Cancer Society.  It has a forward by the ABC News Correspondent Sam Donaldson who developed leg lymphedema after surgery for a malignant melanoma.

It covers who is at risk, precautions, treatment options, helpful resources, insurance issues, how to cope, and more! 

Hi everyone,

Since I don't post on this web-site very often, here is a bit of background on me.  In 1996, I was diagnosed with LBC and underwent a lumpectomy followed by radiation.  In 2006, I noted a puffy area just above my left wrist as well as an unusual aching near the crook of my elbow.  When I mentioned this to my doctor he took a look and muttered something about there didn't seem to be any infection and did no further followup and had no comments.

In 2007, I was diagnosed with a recurrence of LBC following a biopsy and had a lumpectomy. Since the lumpectomy margins did not return clean I opted for a left breast mastectomy with sentinel node biopsy (which I had requested), which was performed on June 8, 2007.  Following my mastectomy I raised the issue of possible LE with my surgeon and he ordered a referral to a lymphedema physical therapist, who confirmed that I have mild LE of my left arm.  Remember, I first noted symptoms in 2006, 10 years after my original diagnosis. I had a series of visits with the PT and was trained in doing self-massage and I was given a prescription for a compression sleeve and gauntlet, which I wear faithfully.

Unfortunately, about two months ago, my 33-year-old daughter was diagnosed with invasive breast cancer with a positive lymph node.  She is scheduled to begin chemo on March 10th, then depending on the results of the BRAC genetic testing she will have either a single or double mastectomy.  Following this she will have radiation and then hormone therapy.  To say we are still in shock about her diagnosis is an understatement.

Okay, that takes care of the background ... here is where Stacy's radiation oncologist's question comes up.  I went with Stacy to the appointment with her radiation oncologist yesterday and she interviewed me first.  I was not surprised by this because the oncologist had done the same thing a couple of weeks earlier.  However, when she asked about my LE she seemed mystified that I had developed it prior to my mastectomy.  She asked me if any nodes were treated by radiation in 1996 and I said no, only under my left arm.  I told her that it was my impression that radiation alone was a risk factor for developing LE, and she countered with "only when lymph nodes have been treated by radiation".

If anyone has any thoughts or comments, I'd appreciate it. I think I am confused by this, which wouldn't be surprising given my daughter's recent diagnosis.

Blessings,

Diane
 

Hi Kimmie,

Thank you very much for your quick response.  I appreciate it.  So you are saying she needs to have an MRI first?  MRI, then if it shows anything a biopsy?   

Binney, I am so glad I read your comments.  Thanks.  I have been putting lotion on my arm when I wasn't wearing my sleeve, but now realize I should be applying it before putting my sleeve on.  I also appreciate your comment about the use of lotion being almost as important as the sleeve - who knew!? 

Thanks again!

Thanks!

Hi Charlotte,

How is the wrapping going?  I hope the above comments were helpful.  Let us know how you are doing.

Hi,

Does anyone know if breast reduction surgery alone is a risk factor for developing lymphedema?  I have a family member who had bilateral breast reduction surgery a couple of years ago, and I am wondering about her risk, if any.

Thanks.

Hi Linda,

Thank you very much for the info, I appreciate it.  Any thoughts on the itching?  I do have quite sensitive skin.  I am using Eucerin lotion on my arm before putting the sleeve on. 

Thanks again,

Diane

Hi Ladies,

My custom-made sleeve arrived earlier this week and I was finally able to work up to wearing it most of the day yesterday.  However, when I removed it last night was surprised to see a couple of small bruises on my arm, and an area around the upper part of my arm that now has a red rash on it.  I do find that the sleeve makes my arm itch quite a bit. 

Any ideas/suggestion?

Thank you.