Open Wounds

labpsb

Open Wounds....

Sorry for the long post.....

I see I am not the only husband, concerned to death and posting.  Maybe we should have our own heading.  Its funny I am very outgoing the other day my wife was in Chemo and the Hospital was having a Breast Cancer Celebration.  This round of Chemo takes several hours (long day) so I went outside to the celebration.  I walked and tried to mingle but the groups even the displayers were very clickish, and a male not wearing pink was like an IRS agent at a small business gathering.  Anyway I donated to several things and went back in to sit with my wife Lynne.  I have tried so hard to get her to post on these forums but she just stays away from the computers.

I am fortunate to own a company and I have been able to devote 100% of my time to fight this cancer.  My wife was an employee and I was also able to get her approved for permanent disability.  Mainly for the medical insurance to give us some options over our HMO later.

Lynne is 49 she was diagnosed with Inflammatory Breast Cancer, Triple Negative.  It hit hard fast and out of the blue last May (clear mammogram and perfect breast a few months earlier).  She finished 12 weeks of AC and is on a weekly Taxol.  The Oncologist was not pleased with the progress and wanted to add another drug, however her left breast has manifested several Ulcers, abscesses, open wounds, over the tumor area.  She has been in the ER several times due to draining and fever.  They are constantly draining and the fluid is clear with blood.  So the Oncologist did not add the extra drug incase she goes to surgery before our planned date in mid December.  Her doctors said last week they want to continue Chemo next year after the surgery and before and after radiation.  Cancer is in the lymph nodes but all other scans are good.  They are not optomistic about getting rid of all the cancer without the extensive chemo.

We have been together since she was14 and I was 15, our 30^th anniversary is coming up.  It's breaking my heart going thru this and I gave her my word we would face every step together.   So I also take care of the Home Care and daily wound care (I had the wound people train me).

The open wounds were a big surprise to both of us and I have not read anything anywhere about this condition.  Has anyone experienced this condition?

They are causing constant fevers and we seem to be in a race with them to get to surgery in December.

Thanks,

Paul & Lynne

fd411

Hi Paul, and Lynne,

I'm so sorry that you are going through this. I don't have IBC, but skin mets to the breast, in which the blood vessels and lymph channels are clogged with cancer cells. I do know that my lesions can break open and weep and it does happen to people with more extensive skin mets.

Have you tried posting this in the Inflammatory Breast Cancer forum? Perhaps you might find some insight there as well.

I'll move this post over there for you. 

Ferne 

Indigoblue

Dearest Paul and Lynne,

As the daughter who cared for a mother with Inflammatory Breast Cancer, I must tell you, go directly to the best hospital you're able to afford, meaning, John Hopkin, Anderson, Sloan Kettering, and/or centers/hospitals which will likely be suggested on the Inflammatory Breast Cancer Forum. 

In my opinion, the mastectomy should have been done immediately...immediately!  What is the point of wasting time, precious time. 

My mother's cancer was discover 3 weeks after a "clean" mammogram and health physical.  She hit her breast on the steering wheel when her car veered off the road during an icey snow storm.  The next morning, a red ring, almost like a burn with a weeping rash appeared around her breast.  4, almost 5 months later the idiot doctor sent her to a surgeon after he was unable to diagnose the oddball condition which, as you well know, rapidly worsened on a daily basis.  Had she immediately gone to a surgeon, her quality of life and ultimate survival been improved.

The surgeon looked at her, and she was in the hospital the following day; both breasts radical mastectomy and every lymph node extracted.  This was in 1982, and treatment was the same for almost all breast cancers, however, she was given some new drugs in huge doses (platinum) and cobalt radiation treatment, along with Tamoxofin (she was likely triple negative, like me.  There was no test for it in those days). 

The platinum has been refined (carboplatin) and other chemo drugs have also improved the survival for IBC.  There were no anti nausea medications, and she was on morphine and other pain medications from the beginning.  I began researching cancer then, and didn't like the statistics.

Meanwhile, she went dancing, shopping, enjoyed grandkids, did the "holidays", and became a compulsive gambler, going to Vegas and Bingo, lottory games, and gave up science, writing, and journalism, her career.  She became happier than I'd ever seen her, and like myself, complete denial led her to enjoy rather than waste what time she had left.

She refused to discuss the cancer, the pain, or the actual disease.

At the time, early 80's, genetic testing and chemotherapy was almost in it's infancy. 

Anyway, I get so furious when I even think about Inflammatory Breast Cancer, and the fact that so many years later, little is known about it because only 2 or 3% of all Breast Cancers fall into this category.  As a triple negative Invasive Ductal Cancer victim, I perpetuate this madness with the knowledge that little is known regarding the genetics, cause, and possibly the current backwards knowledge of cancer/s. 

My mom passed away, I love her, miss her, and I used to cry for her.  When dx with my own stupid cancer, I realized the tears were not for her, they were for me.  Selfishly, I can now say, it's more difficult for loved ones to handle than for the sufferer.  It's so difficult to be a caregiver, it tears you to pieces.  You should get someone to help your wife, it would likely ease the pain of seeing you so heartbroken. 

I have neuropathy, so it's difficult to type.  So much more to say, but I want you to know you are in my prayers and dreams.  I am not religious, but I do believe in a higher power.  My mom said she was looking forward to "flying" around the universe and hoping to finally return to the power, life, love, creation and eternal mystery of time and dimension, the diffusion of life and death solved, at last.

I know she visits occasionally.  Long story....

In any case, she didn't pass away from cancer.  Her immune system shut down due to the powerful arsenol of drugs, surgery, and radiation, exrays, and pain medications. 

Indi

Bastropian

Dear Paul and Lynn:



I too am sorry to hear you are dealing with this. I agree with IndigoBlue, find a place that has experience in treating this agressive disease. M.D. Anderson has a special clinic for IBC. If if you are unable to travel to such a center, your doctors I'm sure could consult with them.

Traci-----TripNeg

Paul,

I do not have any words of wisdom for you with what you are experiencing....however, I would like to say that I hope you continue to post here with us.

It is o.k. that your wife does not want to. You can do it for her.

I can't tell you how much this site has helped me cope with my cancer. I know, it can do the same for you and subsequently....your wife.

Please let us know how you are doing.

Hugs, Traci

ps Indi....your post made me cry. I knew your mom passed but, I didn't know so much more in your post. You are such a strong girl Indi. I wish I were more like you.

labpsb

Thanks for the ideas, thoughts, and prayers.  Both the Oncologist and Surgeon called me today to discuss options.  The open wounds number 3 and are the size if quarters, there are also some small ones, which have not broken the skin.  The large ones are at 12, 3, and 9 o'clock around the nipple.  They go in about 1 inch, I pack them once a day, and they drain enough to soak a shirt each day.

The Surgeon is also a well-respected Oncologist; she only does breast cancer surgeries. She also heads a breast cancer clinic. She has held off on the surgery because she is not happy with the margins and did not want to cut thru cancer.  I told her today this might be as good as the margins get and waiting 2 ½ more months could be disastrous.  She agreed, we have a catch all appointment on the 10^th.  Depending on how it goes this may be the pre-op.  She also is considering radiation now to improve the margins.  In the mean time we will continue with the weekly Taxol, the next one is this Thursday the 4th.

On the call with the Oncologist he assured me that if Lynne has surgery now he would restart her on Taxol and other Chemo drugs after the surgery in coordination with the radiation.

What a mess....

Thanks again,

Lynne & Paul

2curvy

Hi Paul:  Your wife is very lucky to have such a caring and helpful husband.  I have an open wound and have had one since April, when I first started chemo.  It was caused by a breast infection and a suture that was removed to early after mastectomy.  It was large, larger than a quarter and deep, but I only had one.  My husband handled the wound care, which, at first, was gross to me.  Lots of drainage and lots of gauze.  I was on IV antibiotics and regular antibiotics.  I continued through all my chemo treatments with the open wound.  It did not heal, but did not get worse.  I only had fever once.  Finally about a month ago, which is two months out from chemo, it started to heal.  I am handling the wound care now; there is no drainage, but there is some psuedonomis (I have not idea how it is spelled).   It has not healed yet, but slowly getting there. 

Your wife's wounds must be worse.  Anyway, I did make it through chemo with the open wound.  Had it caused more problems, I don't know what they would have done!

Good luck to you and your wife.  Its scary business.

Colleen

Mario90358

Hello,

Our 84 yr. old mother is also suffering from open breast cancer wounds of the left breast which seem to be getting worse.  There is some drainage (bloody fluid) and slight discomfort.  She has finished the 4 heavy chemo treatments and is now doing taxol weekly.  Had a series of fevers over a period of a few days for which a complete Er work up found nothing wrong.  (she did have pneumonia 5-6 wks prev.)  I didn't know the breast lesions could cause the fevers as they do not appear to be infected but are reddened and slightly open with some drainage.  Are you sure the fevers are coming from the breast lesions?  What exact treatment are you doing for the skin lesions?  Is local treatment of the lesions an option? (freezing, Iminiquod, injection of chemo directly into the lesions?)  or do you have to wait until the chemo is finished first.  

Many thanks,

Mario 

ktheo99

Im so sorry to here about all that you both are going thru especially your wife. I discovered an opem wound under my right breat big as a nickle. Dont wear wire bra's or recall hitting our rubbing occuring. after 4 days I went to the emergency room and they made an appointment for me right away. just had breast exam 3 weeks ago .  Was advised had tumors but not cancer. I feel like im sorry inside but no reddness alittle smell and doc said it looks like a abscess.  Did your wife experience any of this?  Im scared but reading your story and the strength between you both gives me strength

Anonymous

I have been searching for this topic on the forum and googled "breast cancer wounds" and Bada Bing... this page popped up... go figure... I am new to the Discussion Boards so I am still figuring out how to navigate the forums.

I have an open wound on my left breast.  It is very unsettling to see my breast tissue exposed where my nipple use to be.  It is roughly 3 inches wide and 2 inches tall and not showing any signs of healing.  Not cool!

My onc nurse said to keep it bandaged and use an ointment on it.  She said it was normal.  Maybe to her it is normal, but to me it is very UNnormal to have a open lesion on my body that doesn't seem to want to heal. 

I did some NET research today and it appears that a good number of women with advanced breast cancers can develop open wounds at some point.  They call them malignant fungating wounds... yuck!... google that and cry let me tell you...

It also appears from my research that they don't tend to heal.  The treatment for them is to keep them managed and bandaged.

I am kinda bent out of shape about it.  I know they are trying to shrink my tumors before surgery, but the Moffitt Cancer Ctr second opinion told me I wasn't a good candidate for surgery since it wouldn't cure me.  No need to 'cut the barn doors off if the horses escaped'... I am not curable with stage 4 bone mets. So I get to keep my boob... yet I have this nasty little open wound to live with.  I could handle the nasty scar it could make healing, but can I achieve healing.

Have others had this similar issue?  Have you managed to heal it?  If so, what did you do?  Inquiring minds want to know. 

beliver

Your wife needs to be careful with radiation, as it gave me open sores that drain. I finished Dec. 1, 2009, and still have drainage. Good luck!

Leta

OMG! I am scared to death at this point! And can barely see to type thru my tears! After reading your post, Paul. And then trying to "take in" what these ppl are saying are totally blowing my mind!  Have never had any experiences with breast cancer until now. My dear sweet sister of 57 has huge open wounds. One in her right arm pit. And one under her right breast. They drain alot. Fluid has been removed from her lungs. She has had 15 rounds of radiation and does chemo every Tuesday. I love her so much! Is she gonna die soon? I know nothing about this"monstrous" disease that seems to have taken over every aspect of my sister's life! 1 week ago is when I first viewed her open wounds. I am still in shock! Paul thank you so much for sharing. I wish I could help you and your wife.But I am very unknoledgable about this disease. My heart really goes out to everyone dealing with this horrible gut wrenching cancer. I'm really scared that my sister will lose this fight! Lynn & Paul you both are in my thoughts and prayers. God Bless.                  Ms.Leta Herring in Texas 

PinkSunrise

I have inflammatory breast cancer.  I've been battling it since 2007.  In 2008, I had lots of open wounds.  Then drained with greenish yellow pus.  They would often bleed.  They crusted over with a brown color, the crust would fall off, and re-crust.  Chemotherapy, actually helped alot. The tumor fell off.  I ended up with a LARGE open wound.  My breast surgeon said it would never heal or close up.  But It did heal!  6 months later, I got another cancer lump.  During treatment, it also fell off, causing another open wound in the same place.   It is 4x4 inches.  It too is draining the same way.  Wounds heal slow, if at all, while going thru chemo.  After, it takes a while.