Inflammatory Breast Cancer

[meggismom]

My mom is 80 years old.  My sisters and I noticed a foul odor coming from my mom.  We finally confronted her and told her we thought she had an infection and that she must go to the doctor.
She revealed that she was bleeding from her breast.  She went to the doctor and he will not tell us anything. (Privacy Act) In doing research, I have determined that my mom must have IBC.  Can anyone give me details on why the odor?  How aggressive is this cancer?  What time does she possibly have if left untreated?  We suspect it may be in her brain because of her decline in her mental state.  My mom refuses treatment.  She is ready to die.  I need any information you can give me.  My email address if you want to email me directly it is ***@****  Any information would be appreciated.
Thanks.. meggismom

[Susiessissy]

A related discussion, Too far gone??? was started.

[Tee179]

A related discussion, breast cancer was started.

[highaim]

Hi.

I'm no where near a medical expert, and I have no formal medical education of any kind. But, I have self-educated about various breast cancer issues.

Blood clots are often exacerbated by cancer. The usual clots in the legs are caused by blood that pools in the vessels/veins, as far as I know. I was lucky enough to get clots in my subclavian veins, casued by the cancer, the port, and the chemo. I also ended up with a clot in my lung. The medicine (warfarin) does not dissolve clots- it prevent new ones from forming by 'thinning' the blood, thus discouraging coagulation. The body itself should dissolve the clot in time.

I am sorry that your Mother didn't seek treatment right away and must now go through a mastectomy.

[meggismom]

Hello again.  My mom has been having a hard time breathing so she went to the doctor today again, and he ordered an xray of her lung.  It showed she has a blood clot in the lung and she is being taken to the hospital.  The doctor also mentioned that she must have the breast removed because it is severely infected.  I question why he did not prescribe antibiotics on Friday.  My mom did sign the release and the doctor spoke with my sister.  She has breast cancer, although we had figured that out.  Can you please explain to be about the blood clot in the lung and how serious it is?  Could this be the end for her?  They are going to give her medicine to dissolve it.  I have no knowledge on this and really would appreciate some help here.  What caused the clot?  Cancer in the lungs? or maybe the infection?  Please help...--meggismom

[meggismom]

Hello Christie:  I am not offended at what you have to say.  This is all so new, we just found out on Friday.  I bought her some nursing pads and some wound care solution.  My siblings and I are reviewing all the options and how we can best care for her and make her comfortable.  I am afraid she has left it go and we are at the end stage.  Thank you for your thoughts and prayers and thank you for your advice. --meggismom

[nurse12hr]

..my own parents are elderly and declining, and my sister and I have had to make some hard choices FOR them, when it began appearing they were not acting in their own best interests.  For example, my father (deaf and at times confused) was STILL DRIVING.  We had to actually go to his physician with a letter detailing his problems and the fact that we had observed him driving.  His doctor then informed DMV, who revoked my fathers drivers license.  My dad was LIVID, but this had to be done to protect both him and others.  

My mother who is on renal dialysis and has a colostomy, was not attending to her basic needs.  We had to once again go to her doctor and inform them of the need for a home health aid, which she hates but HAS to have.  Fortunately, we have been able thus far to RELUCTANTLY get mom to agree, by telling her this was "a gift" from us to her.  We simply told her this had to be, and stood firm.  

Don't let your mother simply go into a decline and struggle to care for her on your own.  There IS help available, and just as a child cannot make vital decisions regarding their health care, your mother in her declining mental state CANNOT make these important choices for herself when dealing with the BASICS such as wound care or simple medical needs.  You MUST be informed about her medical care--YOU are her caregiver.  If this means getting a power of attorney, so be it.

My heart goes out to you--I hope you don't think I am being harsh.  Just be aware that the time may be coming where you HAVE to make decisions for her.  Good luck to you.

[nurse12hr]

I'm sorry to butt in on your post, but I have to ask; where is a home health referral in her case?  Hospice care?  ANY help for you/her to deal with this?

Your mother's physician CAN discuss her case with you, if your mother gives permission.  I am sure you have actually gone to the doctor with your mother.  If she is refusing to allow you to go to the doctor with her, and is deteriorating mentally as you say, it may be time to get help in evaluating her mental state, and legally getting a power of attorney to deal with her medical and legal affairs.

The LEAST anyone can do for your mother is to make a referral for home health care.  They will take over her wound care, medication care (pain meds, etc will be needed), and provide emotional support for her AND you.  

Ask for a referral.  If your mother does not agree, and you think her mental state is interfering with her ability to make rational decisions regarding her basic care (such as wound care), look into avenues for declaring her incompetent.  This sounds harsh, but if she is refusing all care, even the basics, she is NOT rational and by going along with her in this, you are helping to deny her basic medical needs.  

Good luck to you both, and you are in my prayers.

[CCF-RN,MSN-rf]

Dear meggismom:  It sounds as though your mother has a breast tumor that has eroded through the skin.  The odor may be caused by tissue that is decaying and/or infection.  Sometimes an antifungal medication can help with the odor.  Prognosis depends upon the extent of the disease.  If it is in her brain, then the prognosis would not be as long as if it is localized in her breast.  You may want to speak with your mother regarding health care power of attorney or durable power of attorney.  If she has made the decision not to pursue treatment, she will likely not be able to care for herself long term.  If you have these documents, then the doctors can speak directly with you.

[meggismom]

I am going to see her today and try the cleansing solution your referred to if she lets me. Do you think it is painful for her?  I cannot thank you enough for the information.  --meggismom

[meggismom]

Thank you.  What do you recommend I offer to her to help dress and clean the wounds. Warm soaks?  Neosporin?  By the foul odor she emits, there must be some nasty wounds.  You don't know how grateful I am for your answers.

[meggismom]

I will see if mom let's me help her in the wounds.  Even a gentle cleansing hopefully would help. Do you think it is painful for her?  She denies any pain.  (She is the strongest woman I know.)  You are very knowledgeable and there is something that my mom's doctor said that puzzles us.  She was questioning my mother's odor, her bleeding, and her decline in mental capacity.  The doctor said, "If you could strap her down and examine her, you would see that ONE thing attributes to all of her symptoms."  This is confusing and we don't really know what he meant.  Any thoughts?  --meggismom

[surgeon]

something that works really well and is simple and cheap is a dilute solution of bleach -- about 1 part Clorox bleach to 9 parts water (a little stronger at first would be ok) -- to soak into bandages, wring out some, and put on the wound, then cover with something dry. You could use simple cotton cloth/rags: it really isn't necessary to spend on sterile gauze. You'd want to wear your dishwashing rubber gloves -- again, sterility is not really necessary. The solution actually has a fancy name: Dakin's solution -- you can look it up. Dakin's also uses a little boric acid; but diluted bleach works fine. It handles the odor really well. Again, any suggestions made in a vacuum -- not knowing what's really going on -- might not be right. Many hospitals have wound care specialist nurses, and that would be a resource as well.

[meggismom]

One more thing.  In the event that the cancer is still just in the breast.  Given that it has the ulcerations give me an educated guess on how long she has?  This is such a difficult question to address..  Thank you

[surgeon]

It's really impossible to give a timeframe without more information; in particular, knowing whether there are indeed metastases and if so, where and to what extent. The paradox is that cancers which get to the point of such extensive local disease often have a tendency not to metastasize early, which is why they can get to that point. Highly aggressive, rapidly spreading cancers don't often get to the point of such local disease because they cause problems elsewhere before that happens. So, absent distant disease, a cancer could theoretically continue to grow locally for many months or even a few years. I guess your best way to realistic info is to let your mom know you'll support her care decisions, but you need to know what to expect -- and maybe she'll then agree to have information shared.

[meggismom]

Thank you for the information.  Something that I failed to say in my first comment was that when my sister asked her, "When does it bleed?"  She stated that, "when it is rubbed raw".  My mom also made reference to the intense itching.
Please try to give me a time frame.  I know it may be hard, but this is so difficult.  Thank you again. You are very kind.

[surgeon]

It's more likely locally advanced breast cancer, meaning a cancer that has been left alone long enough that it's eroded through the skin causing a chronic draining wound. In other words, the most common form of  breast cancer rather than inflammatory. The difference is not very significant, however, in such an advanced case. The odor comes from the chronic ulceration and infection of the exposed surfaces. It's hard to say how long such a thing can go on, untreated. It's likely to have been there in lesser form for several years. The odor and to some extent the local problems could possibly controlled with topical dressings and solutions of various kinds.

[surgeon]

I'd guess the doctor referred to the ulcerating tumor: that would explain it. And I'm sorry, but there's no way for me to provide even an educated guess about survival from this far away.