Survivors of IBS
Comments
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Hoping for the Best
I hope it's a HIGH percentage. We have to take care of ourselves and do the best we can under the circumstances.
I was on the same cocktail as you. I finished with radiation and Herceptin. Had my port taken out this past September.
If it isn't too much to ask... were you ER,PR+? I was positive all across the board. I am on Tamoxifen and will be undergoing a breast MRI come December 13th on account of my dense breasts. My doctor said I would be tested every six months( Breast MRI, Mammogram). How about you? I am 45 years of age.
Take care, God bless.
BL0 -
Its hard to find outBella Luna said:Hoping for the Best
I hope it's a HIGH percentage. We have to take care of ourselves and do the best we can under the circumstances.
I was on the same cocktail as you. I finished with radiation and Herceptin. Had my port taken out this past September.
If it isn't too much to ask... were you ER,PR+? I was positive all across the board. I am on Tamoxifen and will be undergoing a breast MRI come December 13th on account of my dense breasts. My doctor said I would be tested every six months( Breast MRI, Mammogram). How about you? I am 45 years of age.
Take care, God bless.
BL
Its hard to find out anything about IBC. It is rare. I was PR+ I had a Hysterectomy in 1990. So no Er. I am 53 tomorrow. I have to finish Herceptin and then I will be on Arimidex for 5 years. I have heard that it is better to be positive for any hormones then Neg for them.0 -
you are so right about the hormones!smalldoggroomer said:Its hard to find out
Its hard to find out anything about IBC. It is rare. I was PR+ I had a Hysterectomy in 1990. So no Er. I am 53 tomorrow. I have to finish Herceptin and then I will be on Arimidex for 5 years. I have heard that it is better to be positive for any hormones then Neg for them.
not only am i IBC, but i am also triple negative. talk about a double whammy!!!
nevertheless, i am still fighting with all my might!0 -
The problem with statistics is...smalldoggroomer said:Its hard to find out
Its hard to find out anything about IBC. It is rare. I was PR+ I had a Hysterectomy in 1990. So no Er. I am 53 tomorrow. I have to finish Herceptin and then I will be on Arimidex for 5 years. I have heard that it is better to be positive for any hormones then Neg for them.
that we are not statistics. There is a terrific book, "The Biology of Belief" which is not a self-help, feel good book. I recommend it to anyone with a life threatening disease because it speaks to the fact that we can make a difference in our prognosis. Another great book is, "Anti-Cancer" which was written by a doctor and brain cancer survivor which tells it like it is about statistics. I attend a support group in CT with the author of "Love, Medicin and Miracles". His name is Dr. Bernie Siegel and he was a surgeon at Yale New Haven Hospital for many years. He was one of the first doctors to address the mind body connection. He has many, many stories about people who were written off as hopeless cases who defied the odds and lived into their 80s or 90s. One woman had every node positive and refused chemo and rads and is still alive today into her 80s. He would not have recommended that and advised her differently but his point is "Who knows!" I think we are better off knowing the stats.
Sorry if I sound upset but I think more people die from the fear of their prognosis than the actual disease.
Roseann0 -
Your best source for this info...
Is your own medical oncology doctor. Please remember that "statistics" are like an "average" - whatever the "number" may be, there were other "numbers" both lower & higher. There is nothing, absolutely nothing, about BC that is "100%"... No matter the individual patient, diagnosis nor treatment - there are no guarantees, for any of us. Maybe some day, hopefully. Not meaning to be harsh, just realistic.
Best wishes to you, for continued NED status. :-)
Kind regards, Susan0 -
I have said this before, butChristmas Girl said:Your best source for this info...
Is your own medical oncology doctor. Please remember that "statistics" are like an "average" - whatever the "number" may be, there were other "numbers" both lower & higher. There is nothing, absolutely nothing, about BC that is "100%"... No matter the individual patient, diagnosis nor treatment - there are no guarantees, for any of us. Maybe some day, hopefully. Not meaning to be harsh, just realistic.
Best wishes to you, for continued NED status. :-)
Kind regards, Susan
I have said this before, but I did not ask my prognosis. I knew I would dwell on it, and being anxious of course I would focus on the negative number. If they told me I was 99(I'm not) percent cured I would worry about the 1 percent. I believe statistics are useful only in determining how much treatment you need. If you have an aggressive cancer you need more aggressive treatment. As stated above we are not statistics , and no one knows how the brand of cancer they have been "gifted" with will behave.0 -
I'm not paying attention to the statisticscarkris said:I have said this before, but
I have said this before, but I did not ask my prognosis. I knew I would dwell on it, and being anxious of course I would focus on the negative number. If they told me I was 99(I'm not) percent cured I would worry about the 1 percent. I believe statistics are useful only in determining how much treatment you need. If you have an aggressive cancer you need more aggressive treatment. As stated above we are not statistics , and no one knows how the brand of cancer they have been "gifted" with will behave.
I am newly diagnosed with IBC. I read that the 5 year survival rate is 49%. I'm not going to pay attention to that because it just scares me senseless & I plan on living a very long time.0 -
You are so right, carkris...carkris said:I have said this before, but
I have said this before, but I did not ask my prognosis. I knew I would dwell on it, and being anxious of course I would focus on the negative number. If they told me I was 99(I'm not) percent cured I would worry about the 1 percent. I believe statistics are useful only in determining how much treatment you need. If you have an aggressive cancer you need more aggressive treatment. As stated above we are not statistics , and no one knows how the brand of cancer they have been "gifted" with will behave.
And I thank you for your thoughtful words. Several of my closest BC survivor friends don't know/don't ever want to know their own "numbers"... Can be tough to handle, I totally agree, and understand. But for me, personally, I based all of my own treatment decisions - and current lifestyle choices - on my own numbers. On the other hand, admit I pay very little/no attention at all to "reports"... The news media regarding cancer... I don't "google"... etc. ... I rely completely on my med onc. He's got all that info, then additionally factors in my general health status. Makes a difference.
We are all unique & individual.
Kind regards, Susan0 -
The most recent percentagesBella Luna said:Hoping for the Best
I hope it's a HIGH percentage. We have to take care of ourselves and do the best we can under the circumstances.
I was on the same cocktail as you. I finished with radiation and Herceptin. Had my port taken out this past September.
If it isn't too much to ask... were you ER,PR+? I was positive all across the board. I am on Tamoxifen and will be undergoing a breast MRI come December 13th on account of my dense breasts. My doctor said I would be tested every six months( Breast MRI, Mammogram). How about you? I am 45 years of age.
Take care, God bless.
BL
The most recent percentages I'be seen for IBC (I'm IBC, DX'd Aug 8 2009 - chemo, surgery chemo, rads and Femara & I'm riding NED now but - ?) for 5 yr survival is between 25% and 45% as opposed to the overall percentages for all BC at 87%. Yeah - all breast cancers are not the same!
Susan
edit added - Forgot to add that as far as I'm concerned - my personal stats are either 0% or 100%. The 25% - 45% stat for IBCers making it to 5 years post DX is for all combined together. My individual (and each of us individually) % of making it to 5 yrs post DX is either 0% or 100% as I/we can't have 25% cancer recurrance - it either reoccures (100%) or it doesn't (0%)0 -
I'm IBC, stage 3, triple neg
I'm IBC, stage 3, triple neg and I asked my onc about MY chance of recurrence. He said without the treatments we're doing it's 80%, with the treatments it goes down to 40%.
But, I have to say that I'm also making some lifestyle changes, mostly adding exercise and some relaxation techniques to relieve stress. My diet isn't bad, only have a very occasional drink, and never smoked. I'm doing this because I agree with the theory that we can change the "terrain" and make is less habitable for cancer growth.
I 'get' the worry about recurrence though. I already worry about it sometimes, and I haven't even completed the first part of treatments! LOL. I don't have a great answer for that, except to try and take control where and when you can...try and push the worry aside and stay focused on the blessings you have today.
May you continue to dance with NED for many many many years!
Hugs,
Linda0 -
however I do not have myChristmas Girl said:You are so right, carkris...
And I thank you for your thoughtful words. Several of my closest BC survivor friends don't know/don't ever want to know their own "numbers"... Can be tough to handle, I totally agree, and understand. But for me, personally, I based all of my own treatment decisions - and current lifestyle choices - on my own numbers. On the other hand, admit I pay very little/no attention at all to "reports"... The news media regarding cancer... I don't "google"... etc. ... I rely completely on my med onc. He's got all that info, then additionally factors in my general health status. Makes a difference.
We are all unique & individual.
Kind regards, Susan
however I do not have my head in the sand. I know this cancer can recurr at anytime and my lifestyle is reflective of that. I didnt go back to the way I was. I am on tamoxifen and take zometa twice a year. I also started taking an aspirin. I also went to the best doctors etc... For myself, I choose to not dwell on it except to trust my doctors to know what I need. I also got a second opinion etc...0 -
No Evidence of Diseaseracergirl said:silly question
When you say that the "Pathology came back NED" what does that mean? I have seen many references to dancing with NED, and I just can't figure it out.
NED is great - it means No Evidence of Disease! "Dancing with" is a term many use meaning that NED is their 'partner' - being a terrible dancer but a better than average rider (horse) I'm riding NED. It does not mean that you are "Cured" as at this time there is no cure for BC but it means that there is no evidence/signs of it.
hope that helped.
Susan0 -
ThanksRague said:No Evidence of Disease
NED is great - it means No Evidence of Disease! "Dancing with" is a term many use meaning that NED is their 'partner' - being a terrible dancer but a better than average rider (horse) I'm riding NED. It does not mean that you are "Cured" as at this time there is no cure for BC but it means that there is no evidence/signs of it.
hope that helped.
Susan
Susan, Thank you for clearing that up for me.0 -
Double Whammy!heidijez said:you are so right about the hormones!
not only am i IBC, but i am also triple negative. talk about a double whammy!!!
nevertheless, i am still fighting with all my might!
Same here Heidi!
February 2 will be two years sense dx.
Keep your head up!
Karie0 -
I have IBC and was diagnosedracergirl said:Thanks
Susan, Thank you for clearing that up for me.
I have IBC and was diagnosed on July 7, 2008. As you know, i have had a reoccurance this summer. I do not know what the stats are, however, I do know that IBC is the most aggressive and deadly form of breast cancer, and the rate of reoccurance is high. Stinks! In my case, I had been complaining that I was not feeling well but my breast surgeon and oncologist kind of blew me off. So, I would suggest that you know your body and insist on additional testing or get a second opinion. That being said, I am so happy that you are NED. You are on herceptin so that will also help prevent a reoccurance. Take care and Happy Birthday!!!0 -
Christmas Girl is so right!Christmas Girl said:Your best source for this info...
Is your own medical oncology doctor. Please remember that "statistics" are like an "average" - whatever the "number" may be, there were other "numbers" both lower & higher. There is nothing, absolutely nothing, about BC that is "100%"... No matter the individual patient, diagnosis nor treatment - there are no guarantees, for any of us. Maybe some day, hopefully. Not meaning to be harsh, just realistic.
Best wishes to you, for continued NED status. :-)
Kind regards, Susan
Christmas Girl is so right! I pray that NED will continue to dance with you!
Hugs, Angie0 -
I didn't have IBC, but, wantTexasgirl10 said:I'm not paying attention to the statistics
I am newly diagnosed with IBC. I read that the 5 year survival rate is 49%. I'm not going to pay attention to that because it just scares me senseless & I plan on living a very long time.
I didn't have IBC, but, want to wish you good luck with your treatments. I have a feeling you will live a very long time!
Hugs, Debby0
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