Survival rate for IBC patients

According to the reports I've read - 25% to 40% chance of making it to 5 yrs with IBC. While for all types of BC combined, the 5 yr survival rate is 87%.



Of course, we are each unique. So to me those stats mean nothing. My odds are either 0% or 100% as either it comes back or it doesn't - not some percentage in between. (I'm 2 1/2 yrs since end of TX and still riding NED.)

(((Marianne))), keep in mind that today's stats are based on yesterday's treatment protocols.  In other words, women alive 5 years or 10 years or 15 years post-treatment had their treatment 5, 10 or 15 years ago, and tx is constantly evolving and improving.  

Also... I personally believe that where you get treatment, especially with a less common form of bc, can make a big difference.  Be sure your medical team has hands-on experience treating women with IBC -- not just textbook knowledge.  Here's a link to the best cancer treatment facilities in the U.S.  If there isn't one near you, you can always get an opinion on your tx plan from the closest one, and then take that information back to your local docs.  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html   These centers see the most bc.  They're also the places that do the research, so will be the first to implement new findings.  Remember, those bc survival stats include women who may not have gotten the best care, and some who were not promptly diagnosed due to a young age, for example, and doctors who misdiagnosed them initially.  Hopefully, your dx wasn't delayed, and you can get prompt tx by a top notch medical team.     Deanna

Marianne52, I am almost 2 years out from my initial diagnosis and 11 months out from my bilateral mastectomy. You can do it! I am presently NED.



I was in a clinical trial with MDAnderson in Houston, TX. Great place to go but I got kicked out of my trial by my insurance company 3 months into it. If I comes back- I would go back to Houston in a NY second. My insurance company has a clause that they don't cover clinical trials. Why they OKd mine for 3 months is baffling.



Good luck to you!

NED = No Evidence of Disease.



This is the best any of us can get as there is no cure (at this time) for breast cancer. Many women will say "I'm dancing with Ned" but I'm not a good dancer at all but am a horsewoman so I say "I'm riding NED.".



Personally I had no mets but did have 19 pos. nodes. The final reports will not be til after sxurgery when the path is done on the removed tissue.



As dlb823 said - all the stats found on line are not current - it takes time for studies/research to be compiled. Remember that they include all who are DX'd. Some already have health serious health issues that can be negatively impacted by the TX's more than some one who goes in to TX basically healthy. I went into TX basically healthy - just arthritis in upper back. Have a couple issues since end of TX but nothing that slows me down.



I also believe that our outlook on life plays a big part in as life's experiences have made us who we are and how we handle what "life puts on our plate". For some of us, our Faith/Belief in a Higher Power also comes into how we handle anything. Just my thoughts.



To me - every new day is a miracle and there is no way to know what the future holds. We are supposed to have severe T-storms this afternoon - lightening could hit me, a tornado could hit the house (we have no basement) or huge hail could hit me in the head. Sure could happen but I will do all I can to protect myself and not worry "what if". I look at my IBC the same way. I did all my Drs wanted me to do - A/C, surgery, Taxol, rads and Femara. IF something comes up again then we'll fight it again.



We are all so different - there is no "right or wrong" in how we feel or live our time.

Marianne: I'm sorry you have to join this Board but please don't be reading all those statistics -- we are all different and today many women live years and years after diagnosis of IBC.  We have to go through all the chemo, radiation and surgery and FIGHT.  It is not pleasant but try to take small steps and not be overwhelmed and thinking the worst.  I know it's not easy.  But if you can put things into groups -- so much time for chemo, then that's done, then on to the next treatment.  Our lives certainly take a flip, from being healthy to nothing but doctors' appointments and tests and worry every time waiting for the results.  I hope you have good supports to help you through this rough time and have good doctors.  Post anytime as we will try to help with any questions or worries you have.  Cancer sucks but you can fight it.  If you are a hospice nurse you will have helped many patients through difficult times and have been strong for them.  Now it's time to be strong for yourself. 

Kathy Toronto

Join us at ibcsupport.org. We all are in the same boat from newbies to a 21 year survivor. The purpose of the group is to support & educate. I believe we have several gals in your area. Hope to see you there.

I got on this thread by accident.  I do not have IBC but am a stage IIIc sister that posts here and when I happened to this page decided to post.   I was dx April 2011, UBMX in June, chemo July thru November and rads till February of 2012 and now on Arimidex.  I had a tiny tumor with lots of positive nodes and now on Arimidex.

The extremely large number and grade of my positive nodes means a chance of a recurrence due to my pathology was deemed high but declined with surgery, chemo, rads and now with hormone therapy hoping to decline each passing year.  Something that put things more into perspective for me and shows how truly fragile life can be - - we are in the planning stages for our 40th HS reunion.  The memorial page is ever growing (presently at 26) and next to the names they have the year they died.  People were asking how so and so died and it appears at least 1/2 of the current 26 dead died not from any disease, but in car accidents and even more sad, two of those were murders.   We graduated HS in 1973 and so far looks like 3 of those didn't make it out of the 1970s so their lifespan was cut very short.  

The above doesn't have anything to do with or change any of our statistics but to me the fact that more of my classmates died in a car accident really reinforced in theory that old saying about how any of us can die getting run over crossing the street.  It may be easier the farther away you get out of treatment though because now I just figure I need to make the most of whatever time I have left and in that regard, none of us (whether we are healthy or sick) has a real clue when our number will be up.

Marianne,

I was diagnosed with IBC in August 2007; had chemo, MRM (right only) and 33 rads, after which I was declared NED (no evidence of disease). I am coming up on 5 years since my diagnosis. One member of my online support group has just passed her 21st year since her diagnosis. Each of us is different, and the main thing is to get a doctor (surgeon/oncologist) who is familiar with IBC, both diagnosis and treatment. There are 5 or 6 IBC Clinics around the US now, and you may live near one of them. IBC is aggressive and needs to be treated aggressively. Feel free to contact me if you want further info.  

Marianne,

How was your Dr apt?



_________________________________

IBC

Class of 2007

Stage IIIB

Currently NED

Marianne,

We have a lot in common.  I also have a medical background and was diagnosed with IBC, stage 3C, 3 years ago.  I also read the grim statistics on the internet.

I want to repost Deanna's reply as I agree 100%

(((Marianne))), keep in mind that today's stats are based on yesterday's treatment protocols.  In other words, women alive 5 years or 10 years or 15 years post-treatment had their treatment 5, 10 or 15 years ago, and tx is constantly evolving and improving. 

Also... I personally believe that where you get treatment, especially with a less common form of bc, can make a big difference.  Be sure your medical team has hands-on experience treating women with IBC

You will find a lot of old statistics on the internet.  Women with IBC are living longer.  Most IBC breast cancers present as triple negs as yours does.  It's an agressive and tough cancer to beat but not impossible.  A lumpectomy is not an option; you will have to have a mastectomy.  Chemo and radiation are also not negotiable.  It's no walk in the park but IBC is in some cases, curable. My oncologist has an IBC patient that is 22 years out cancer free. I was stage 3C at diagnosis and I am now cancer free.   It has been 3 years.    You are welcome to pm me.

Marianne - I too was treated at MGH, six years ago, with Dr. Ryan (she's at Fox Chase now) and Dr. Gadd. I now see Dr. Higgins.  You are in good hands there, they all work with Dr. Overmoyer who runs the IBC clinic at Dana-Farber. 

There is an IBC support group that meets periodically in Newton that you might want to connect with when you are ready. We have many double-digit survivors in New England, including some that live in NH. some in Mass, and some in RI, some with no recurrences, some with mutiple recurrences but that are still kicking cancer's butt! As my "IBC-BFF" says - we are a tough bunch of broads up here in New England!

Feel free to send me a private message at any time, if you want to just talk!

Hi ladies,

The question to survival is more per individiual coping and will to survive from within.  I was given 12 months back in 2007 when I had duel mastectomy (IBC), prior to this in 2005 I have had invasive ductal cell carcinoma.  Today I still stand tall with secondary metastasis to my ilium and now the tumor has made its way to my right eye.  Yes, my eye.  Very quick I can tell you.  Of all places, the eye my line of sight.  I am back to my opthamologist on Wednesday to find if Laser will blast this ?????? but if not I have been told its Radiation and permanent blindness.  All started 12 weeks ago, I was travelling around Oz to catch up with all my girlfriends then the floaters started.  Now, I would say I have maybe 20-30% vision in my right eye.  I also have lost my hearing.  My oncologist has had me in doing bone scan and CT of my organs as I have also picked up this niggly cough and shallow breathing. 

I am 42 years old and still walk and exercise every day with my teen son.  Cancer can not take away my hopes and dreams.  I live everyday and do not plan or make excuses for my disease.  This is my fourth battle since June 2005.  Chemo and radiation was not able to knock the tumor back.  Resistance.....  If I can advise, then I would say find a hobby, stay at work and walk daily to get the oxygen into your blood.  The work is to give you sanity and to stop thinking and feeding your fears.  Keep your independence and the mind free off worry.

Each diagnosis is not the same as the next.  You may have no lymph involvement or you may have secondaries at the time of diagnosis.  Many factors effect survival and the biggest is the power of the mind. 

WE are all on our personal journies and some will beat the odds whilst others like myself are drawing a thin line.  But in the end its knowing that the diagnosis sucks and that each one of us should think about donating our organs to research so that they can outsmarten and have real live tissues to work with to stop our sisters, friends and women of all walks of life not walking in our steps but having fighting determination to know that research has finally found that enemy within and able to outsmart and put it to death before it claims another one of us.

I remember when I donated my breasts to research that I got a thankful letter telling me that my specimens was alive and well but sorry for me as the tumor was stronger than the treatment given and not a good outcome for me.  However grim my diagnosis I am still standing tall.  You all can do that.  God Bless You All, Warrior women.