IBC questions...scared!!!!!

LloydBraun

My wife has IBC and had a radical mastectomy. My research tells me that radical mastectomy's are only done now in dire situations. Our nurse also said she has never seen such a surgery. It sems like the info keeps getting worse.

 My fear comes from that, and the fact that her tumor seemed to grow after chemo, in the time period before the surgery.

 Is this normal? Should I be worried? Please be honest.

shrink

The tumor growing after chemo says that that particular chemo hasn't worked for your wife.  I think radical mastectomies are rare these days but you should ask the surgeon why he or she chose that over a MRM (modified radical mast) There may be other chemos which will help your wife.  Don't be afraid to write down all of your questions and ask the surgeon and oncologist what the options are.  Good luck.

ibcspouse

Lloyd,

I can't answer your question about the Radical as opposed to the MRM.  It is posible that the margins were not clean, and there was muscle invasion.  As to the tumor growing, With IBC, it is so aggressive that chemo knocks it down, but it will grow back  That is why local treatment, RM or MRM plus radiation is needed to remove the residual tumor.  As for more or different chemo before surgury, that should have been discussed with your wife and you and the risk discussed.  Always would recommend an IBC clinic or major cancer center for second opinions or follow up treatment. 

ebann

Lloyd;

My tumor was 12.5cm. and to think that shrank some. I had a double radical mastectomy. Cause it is such a aggressive form of cancer they have to make aggressive moves in treating it. The chemo does work to a certain degree. Possibly not what you are thinking. For me the chemo put my tumor in a shell and made it hard and the activity level was lessened. It was a 6 and now it is a 2. My onc told me that she is positive that I would of had more positive nodes. I had only 3. I still have cancer and am having to do radiation and more chemo at the same time. I was very discourage but am glad that I am on the road to recovery. Please ask your doctor all that you need too. Make a list so you do not forget anything. It is important, you have hired them to do the work. So you have the right to ask as many questions as you would like. Your wife is a trooper and she is lucky to have you by her side. I wish you the very best.

Blessings; Elizabeth

LloydBraun

Thanks for all of your wisdom and prayers, all of you.

 We will see the surgeon for the first time after radical, very soon. I have my fingers crossed that everything will be fine. He did end up doing more during surgery, so that has me a bit scared.

I will have a million questions for the Dr. My hope is that it has not spread and my wife will not need further chemo.

The nurse was surprised by what she saw, so I anxiously await the Doc's report.

 Thanks again and best wishes to all! :-))))))

Squeaker

Lloyd - Just as those who've mentioned it above, don't forget that radiation is the standard 3rd leg of this IBC race. It's the element that should clean up any residual disease and really lays the foundation in some ways for 'where to next?' ... back to chemo or forward to NED. Hopefully, between the surgical path report and the radiation results, you both will see clear options ahead. Best of luck to you both.  Squeaker

rosied51

If tomorrow turns out that it is IBC,I'm having my mam 9am, my question is this can it be affecting the armpit as well as the neck area. Know this sounds out of sort but my right breast feels heavy and it is streaked with red marks like bruises. I know I will not sleep tonite.Any indications one way or the other, does anyone know if there are any photos of orange type skin, on my sheet from the Dr she wrote D'Orange.not knowing if she is talking about the skin puckering.Filled my husband in today I felt like this is my body that it is happening to.

ibcspouse

rosie

Go to ibcresearch.org,          eraseibc.org,         ibcsupport.org,    or ibcwatch.evidencewatch.com/  all are great sites the last one is a more tech with treatment, studies and symptoms.