Survival prognosis

fejkooh63

Hello.  My 70 year old mother has just been diagnosed with Inflammatory Breast Cancer (IBC).  We are very early in the discovery of the disease and exploration of treatment options.  One of the options that has been discussed is having no treatment at all.  Would anyone be able to tell me how long survival could expect to be without treatment?

Thank you.

Nel138281

fejkooh,

I am surprized at the recommendation for no treatment at all.  IBC is an aggressive from of cancer and usually they want you to move ahead and pretty quickly.  Does your Mom have other health issues that would make treatment difficult?  Are they giving the option of no treatment due to her age, cuz 70 is pretty young these days.  I would recommend a second opinion and very quickly and ask many questions about why that recommendation.  What were the other options presented?

You will get lots of support here.  Ask all the questions you want.

Be well

Nel

fejkooh63

Hello Nel.  Thank you so much for the response.  Opting for no treatment has NOT been presented as an option by anyone in the medical community but rather is a personal potential option my mother has expressed to us.  We are awaiting the results of cat-scan and bone scan procedures to see if the disease has spread at which time decisions will need to be made.  I am just trying to gain as much as information as I can so I can be as informed as I can when these decisions are discussed.  All of us in the family are familiar with the aggressiveness of the disease and the multitude of treatment options available.  The only information I don't have is what the time frame for survival would be IF she makes the decision NOT to proceed with treatment.

Thank you all!

Shaesmom

My mom was diagnosed with IBC about 7 years ago. We looked at survival rates at that time and it was not a pretty picture. My mom chose to press through. She was 63 at the time, she is now 72. Her symptoms were, she went to the Dr with what looked like a breast infection, redness, and extremely soar. Dr sent her home and informed her she had a breast infection. I found it odd at her age to hear that. 2 weeks later she detected a large lump in her breast, Dr ordered a biopsy, it came back positive for cancer. They scheduled her for surgery, but we chose to go for second opinion. The first Dr had neglected to take into consideration her symptoms of having had a breast infection. Our second opinion was at Georgetown Medical, at the cancer center there. I can't remember the name just now, but with there expertise they quickly diagnosed IBC and informed us of need for immediate chemo. Doing surgery first would have been a big mistake. After her Chemo treatments she opted for the double mastectomy and removal of glands on the cancer side. This was an amazing journey, one I would not trade for the world. I spent as much time being involved in my moms life during all her visits, this helped me process the options and better hear her opinions. It is so important to give the one being treated time to process, but it is also just as vital to process what we are experiencing emotionally so we can better respond to what our loved one is going through. You are smart to educate yourself, that was the route I took. My sisters dealt with it totally different, I was glad to know there is no one right way of doing it. We each had to respect each others difference and we are all the better now, because we did so.

Kicks

I was 63 when DX'd IBC - I'm 66 now and NED (No Evidence of Disease).  I was never told by any of my Drs to do no treatment. Was always told "we'll fightt with everything"

Percentages - what does that really mean?  I was healthy before DX but NOT all are.  Your Mom's other health issues may come into play with TX.  As far as I know I  still am doing good - yeah - some minor issue that basically are just a part of getting older.

Suggestion - have your Mom come and ask her own questions.

(edited for 'stupid typing' - blaming the tablet's keyboard [it was replaced by Verizion the next night] and one hand typing due to broken right wrist) 

Claudia413

I was 65 when I got my dx of stage IIIb IBC in 2007. After chemo, mx and rads, I'm NED (no evidence of disease or no expiration date). I didn't really have major problems going through any of my treatment. I consider myself very lucky. I have had the past 5 years to watch my 5 grandkids grow a lot and my first great-grandchild born in 2011. I am so glad that I chose to fight with everything in me. I was also one who never thought they'd have any treatment for cancer if I ever got it.

Now I'm the Vice President of the Inflammatory Breast Cancer Foundation (www.eraseIBC.com) and spend my retirement talking to people about IBC and educating the medical profession and the general public about the signs and symptoms of IBC.  I never thought this is what I'd be doing as I head toward age 71, but it works for me. 

liv-

hello lovelies

such an individual option but the prognosis / diagnosis stats do show that ibc is very aggressive and should be treated with chemo then mastectomy then rads..

even though i had 6 months of intense chemo treatment i could come into the category of not having any chemo because by the time i had finished treatment my cancer had grown and had stopped responding to treatment after the 4th dose.

so you could say i didnt have chemo first as no response and in the old old old days taking the breast off first was a normal practice with ibc and it was almost a death sentence (is this right Bon or Terri?)

imho...too hard a question  to answer but for the person who has the disease..and i know we dont like stats but they do hold some relevance.

hard one.

xx

ibcmets

Liv,

There's protocals for each cancer.  Chemo first is a major protocal for ibc because the cancer is like a nest of cancer not an exclusive tumor; although I had one of those as well.

Terri

Kicks

In my case it was not chemo, surgery, rads - it was chemo (4 DD A/C), surgery, chemo (12 Taxol), rads.  As it was explained to me (and makes a LOT of sense), use the neo-adjuvant to get it to form 'lumps' so surgeon could get it out and then hit with adjuvant to get anything that might be 'lurking'.

As far as I know - I'm still NED.