Need emotional help dx w/tnbc
I read a post of Mimivac's. Her first one before her chemo. What she wrote is how I am feeling. How do you live with a type of cancer that even after chemo and radiation, it can come back at anytime?
Btw I did not mention that I had a mamo/untrasound of this breast on jan2012 and everything was clear? This damn thing popped up sssooo fast.
Comments
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KristieZ
So sorry you are going thru this. I just want to say to throw those statistics out the window. You are not a statistic, you are a person. Those numbers do not share any other info (medical histories, other complications, etc.) that may have contributed to the whole picture of each patient. There can be 10 of us here on the same treatment not one of us will have the exact same experience with s/e, effectiveness, or anything else. We are all individuals.
I have IDC, had all tests, including a mammo less than a year before I was re-diagnosed, everything was picture perfect. This little beast can strike anytime, and depending on the aggressiveness, can do little or a lot of damage.
Just remember as you are reading all about this on the internet that you are an individual, and as you will learn from all the TNBC survivors on this site, everyone's experience is different, and depending on our Medical Oncologists, most of our treatments for cancer can also be quite different.
About your question about living with a type of cancer that can come back at anytime? It can happen with any of these cancers, and you learn how to appreciate those you love so much more, and how to make each day count!
Prayers and all the best to you!
Carol0 -
It's not a death sentence!
Glad you found us.....there are more than a few of us on this board who have TNBC...and in various stages of this journey..I'm TN...dx in April 2009... Like you, I had a clean mammo and ultrasound less than 3 months before I found the lump myself...TNBC is agressive and fast growing....I had lumpectomy, chemo and radiation...I was in remission for 19 months...I'm not going to go into all the details, to long to write....but my tumor markers in Feb. were 98...indicating again that the bc had gone beyond my recurrence of the lymph nodes...(which were clean when I had my lumpectomy.)......scans showed I had 3 small spots on my brain...I was totally asymptomatic...had 10 radiation tx to my brain...that took care of that...my oncologist started me on Avastin+Carboplatin in March...my tumor markers are now 34...within the normal range of 0-39..I'm doing great on this chemo combo! This combo has been the game changer for me! And now I only have to have chemo every 3 weeks instead of every 2 wks.... my side effects are pretty minimal...fatigue for a few days, I also have a Neulasta injection the day after chemo which does cause some aches..taste buds off....
I certainy understand your fear, we can all relate to this...as I said, it's not a death sentence..please don't read all the bad stuff the Internet has to say...YOU are NOT a statistic! no one knows when our time is up! My surgeon, ppc and oncologist all told me this....Stick with top notch sites,....and there are new drugs coming to light every day...mine is stage IV due to the 2 recurrences..but I lead a normal life.....we've had a trp planned to the Dominican Republic for FEB.2013.... Planned it 2 months ago!
I'm curious, when do you start the Avastin+Carboplatn?
You DO HAVE A FUTURE.! I, personally, would go back on some type of antidepressant....you do sound, understandably so, depressed to me....there are very few women on tis board, I would say, that do NOT take something..no shame in that..
So glad you found "us".....we'll offer all the encouragement, care and concern...please keep posting....and Mimivac hasn't posted in ages....she's doing fine as far as we know...
Hugs, Nancy0 -
KristiZ,
I'm triple neg
KristiZ,
I'm triple neg inflammatory breast cancer, and yes the statistics are ugly. Susan (Rague) once said something that really helped me let go of the statistics.
Basically she said her personal statistic is either 100% or zero%. It's going to come back, or it's not.
Knowing that, as I see it, your job now is to do everything you can to put yourself on the zero% side of the column. To me, that means listening to your docs, taking care of yourself by eating right and exercising if you can while on chemo, eliminating stress (again exercise, meditation if that works for you), counseling, anti-depressants, and taking the time to enjoy the special times in your life.
Use your ability to plan...plan to live, plan to beat this. And then work that plan.
I hope this helps you.
Hugs,
Linda0 -
I am starting the avastinMAJW said:It's not a death sentence!
Glad you found us.....there are more than a few of us on this board who have TNBC...and in various stages of this journey..I'm TN...dx in April 2009... Like you, I had a clean mammo and ultrasound less than 3 months before I found the lump myself...TNBC is agressive and fast growing....I had lumpectomy, chemo and radiation...I was in remission for 19 months...I'm not going to go into all the details, to long to write....but my tumor markers in Feb. were 98...indicating again that the bc had gone beyond my recurrence of the lymph nodes...(which were clean when I had my lumpectomy.)......scans showed I had 3 small spots on my brain...I was totally asymptomatic...had 10 radiation tx to my brain...that took care of that...my oncologist started me on Avastin+Carboplatin in March...my tumor markers are now 34...within the normal range of 0-39..I'm doing great on this chemo combo! This combo has been the game changer for me! And now I only have to have chemo every 3 weeks instead of every 2 wks.... my side effects are pretty minimal...fatigue for a few days, I also have a Neulasta injection the day after chemo which does cause some aches..taste buds off....
I certainy understand your fear, we can all relate to this...as I said, it's not a death sentence..please don't read all the bad stuff the Internet has to say...YOU are NOT a statistic! no one knows when our time is up! My surgeon, ppc and oncologist all told me this....Stick with top notch sites,....and there are new drugs coming to light every day...mine is stage IV due to the 2 recurrences..but I lead a normal life.....we've had a trp planned to the Dominican Republic for FEB.2013.... Planned it 2 months ago!
I'm curious, when do you start the Avastin+Carboplatn?
You DO HAVE A FUTURE.! I, personally, would go back on some type of antidepressant....you do sound, understandably so, depressed to me....there are very few women on tis board, I would say, that do NOT take something..no shame in that..
So glad you found "us".....we'll offer all the encouragement, care and concern...please keep posting....and Mimivac hasn't posted in ages....she's doing fine as far as we know...
Hugs, Nancy
I am starting the avastin and carboplatin the same time as taxol. 3 drugs at once.0 -
I have been at this game aGabe N Abby Mom said:KristiZ,
I'm triple neg
KristiZ,
I'm triple neg inflammatory breast cancer, and yes the statistics are ugly. Susan (Rague) once said something that really helped me let go of the statistics.
Basically she said her personal statistic is either 100% or zero%. It's going to come back, or it's not.
Knowing that, as I see it, your job now is to do everything you can to put yourself on the zero% side of the column. To me, that means listening to your docs, taking care of yourself by eating right and exercising if you can while on chemo, eliminating stress (again exercise, meditation if that works for you), counseling, anti-depressants, and taking the time to enjoy the special times in your life.
Use your ability to plan...plan to live, plan to beat this. And then work that plan.
I hope this helps you.
Hugs,
Linda
I have been at this game a long time. I was first diagnosed in 1994 at age 34. I am 52 right now. My belief is statistics are only to determine how aggressive your treatment will be. Yes some cancers are "better" than others I suppose but as Rague said either you are 100 or 0 percent. usually there are aspects of our cancers that are better than others. or example my 2nd primary was estrogen positive but it was a more agressive type. So am I better off than you? I doubt it.the first time I was diagnosed I was obsessed with pathology and nodes and such. Now I know cancer reacts in each individuals body differently. You have to come to terms with just not knowing. No One diagnosed with breast cancer regardless of their pathology has a guarantee. Nobody feels safe. It is something we live with daily. Day by day, you learn to put it in perspective. your feelings are normal, it is simply a journey of growth to deal and thrive, and it is too soon for you to have any sort of peace about it. This is a great group of people, we all pop in at different times, some more than others, but we get the pink bus and we are there for our girls and guys. Lots of smart caring people. Many of us are having happy lives and you will too. You can get through chemo. Please post, rant, complain, be happy, whatever you need to be. You are not alone! Big hugs!0 -
Scared too
I am also TNBC dx nov 2011 and scared of reoccurrence. I went through 6 rounds of TAC and had a bi lateral mastectomy. I understand your fears totally. I try to take this one day at a time right now. I agree with everyone else, we are all individuals. I try not to think about the negative but focus on the positive and that is that for now, I am dealing with cancer, I am dealing with remission!
Please continue to read and post here, it helps to forget statistics and talk with real people!
Hugs to you
Sandy0 -
Thank you everyone for your
Thank you everyone for your kind words. It has been a hard month. When i first got dx, I thought for sure that I would be in surgery within 2 weeks. This is what occurred for my mom's co-worker and I thought I would be similar. From what I been reading on the boards, chemo 1st is now normal. So many tests. 1st at the hospital were I got my biopsy, then when I was dx I changed hospitals. Then they had to review my biopsy, 4th of July holiday did not make thing easier. Then the surgeon appt, oncologist appt, MRI, CT scan, bone scan, MUGA, more blood work , BRACA test, port installed and finally a second (yes second) biopsy for the clinical trial. DX on 6/28 and finally going to kill this thing starting on 8/6. Over 1 month for this tumor to grow and put my nodes and body in further jeopardy. All this time, just left me time to be scared more. Some ppl told me that once I get into chemo, I will start to feel like i am doing something.
Funny thing..I want to kill this tumor, but chemo also scares me. The stuff they put into your system is nothing but pure poison. Tomorrow, not only the normal taxol will be running through my vains but another 2 poisons. Now I did sign up for this clinical trial, the risks were spelled out to me. Tnbc is one nasty **** of a cancer and needs to handled accordingly. **** slap it harder. Knock it off it's **** so hard that it does not come back up (hopefully never).0 -
Me Again....KristieZ40 said:Thank you everyone for your
Thank you everyone for your kind words. It has been a hard month. When i first got dx, I thought for sure that I would be in surgery within 2 weeks. This is what occurred for my mom's co-worker and I thought I would be similar. From what I been reading on the boards, chemo 1st is now normal. So many tests. 1st at the hospital were I got my biopsy, then when I was dx I changed hospitals. Then they had to review my biopsy, 4th of July holiday did not make thing easier. Then the surgeon appt, oncologist appt, MRI, CT scan, bone scan, MUGA, more blood work , BRACA test, port installed and finally a second (yes second) biopsy for the clinical trial. DX on 6/28 and finally going to kill this thing starting on 8/6. Over 1 month for this tumor to grow and put my nodes and body in further jeopardy. All this time, just left me time to be scared more. Some ppl told me that once I get into chemo, I will start to feel like i am doing something.
Funny thing..I want to kill this tumor, but chemo also scares me. The stuff they put into your system is nothing but pure poison. Tomorrow, not only the normal taxol will be running through my vains but another 2 poisons. Now I did sign up for this clinical trial, the risks were spelled out to me. Tnbc is one nasty **** of a cancer and needs to handled accordingly. **** slap it harder. Knock it off it's **** so hard that it does not come back up (hopefully never).
Kristie.....
Try to not look at chemo as poison....cancer is far more poisonous! I look at chemo as something that's killing the cancer....and extending my life...
I actually visualize the chemo, as searching for cancer cells and killing them...do I like chemo? No! .....But with bc, there's nothing to "like"....it all sucks! But to quote one of our dear sisters, Chenheart, "We do what we have to do, so we can do what we want to".....That has helped me greatly.....
Another question...you said that the Avastin+Carboplatin is the clinical trial? Is that in addition to the Taxol? Because I've been, as I said, on this chemo cocktail since March....my oncologist was able to secure the Avastin for me, through the manufacturer as the FDA pulled it for stage IV bc in Jan. of this year...they replace what I use to my cancer center at no cost to us....as our insurance denied it because the FDA pulled it....I never had to sign anything for this....I was in a clinical trial last year, for TESETAXEL....I had 17 pages to read and sign....mind boggling....thought i'd have to sign away my first born! lol.... Took 2 cycles, it was oral...didn't work for me....second cycle put me down for 10 days.....yuk!
I'm not trying to be nosy with these questions but my ears perk up when I hear someone who is on Avastin.....you're the only other one on this board, in addition to myself that I know of, who is on it.......as most oncologists don't seem to put their patients on this, perhaps because the FDA pulled it....but it's still on the market for other types of cancer...go figure! It has been the game changer for me.....
Wishing you the very best results on this chemo cocktail....please keep us posted, we care!
Hugs, Nancy0 -
Yes that is in addition toMAJW said:Me Again....
Kristie.....
Try to not look at chemo as poison....cancer is far more poisonous! I look at chemo as something that's killing the cancer....and extending my life...
I actually visualize the chemo, as searching for cancer cells and killing them...do I like chemo? No! .....But with bc, there's nothing to "like"....it all sucks! But to quote one of our dear sisters, Chenheart, "We do what we have to do, so we can do what we want to".....That has helped me greatly.....
Another question...you said that the Avastin+Carboplatin is the clinical trial? Is that in addition to the Taxol? Because I've been, as I said, on this chemo cocktail since March....my oncologist was able to secure the Avastin for me, through the manufacturer as the FDA pulled it for stage IV bc in Jan. of this year...they replace what I use to my cancer center at no cost to us....as our insurance denied it because the FDA pulled it....I never had to sign anything for this....I was in a clinical trial last year, for TESETAXEL....I had 17 pages to read and sign....mind boggling....thought i'd have to sign away my first born! lol.... Took 2 cycles, it was oral...didn't work for me....second cycle put me down for 10 days.....yuk!
I'm not trying to be nosy with these questions but my ears perk up when I hear someone who is on Avastin.....you're the only other one on this board, in addition to myself that I know of, who is on it.......as most oncologists don't seem to put their patients on this, perhaps because the FDA pulled it....but it's still on the market for other types of cancer...go figure! It has been the game changer for me.....
Wishing you the very best results on this chemo cocktail....please keep us posted, we care!
Hugs, Nancy
Yes that is in addition to the taxol. On Facebook, I know two other ppl that we're on avastin. One for them is a 5 year survivor.0 -
Hi KristieKristieZ40 said:Yes that is in addition to
Yes that is in addition to the taxol. On Facebook, I know two other ppl that we're on avastin. One for them is a 5 year survivor.
You've gotten a lot of good advice here. I, too, hated the thought of chemo, but I also began to look at it as killer cells going after that nasty cancer and crushing it. Before cancer, I was one of those who was afraid to even take an aspirin. Once I started treatment though, my thought process changed and I wanted to fight it with everything we could throw at it.
Today is your first day of chemo--you are drawing from your arsenal of weapons and they are attacking the cancer as you read this. Stay strong and focused, stay hydrated, rest as much as you can and take good care of yourself.
Hugs, Renee0 -
Just what every one elseKristieZ40 said:Thank you everyone for your
Thank you everyone for your kind words. It has been a hard month. When i first got dx, I thought for sure that I would be in surgery within 2 weeks. This is what occurred for my mom's co-worker and I thought I would be similar. From what I been reading on the boards, chemo 1st is now normal. So many tests. 1st at the hospital were I got my biopsy, then when I was dx I changed hospitals. Then they had to review my biopsy, 4th of July holiday did not make thing easier. Then the surgeon appt, oncologist appt, MRI, CT scan, bone scan, MUGA, more blood work , BRACA test, port installed and finally a second (yes second) biopsy for the clinical trial. DX on 6/28 and finally going to kill this thing starting on 8/6. Over 1 month for this tumor to grow and put my nodes and body in further jeopardy. All this time, just left me time to be scared more. Some ppl told me that once I get into chemo, I will start to feel like i am doing something.
Funny thing..I want to kill this tumor, but chemo also scares me. The stuff they put into your system is nothing but pure poison. Tomorrow, not only the normal taxol will be running through my vains but another 2 poisons. Now I did sign up for this clinical trial, the risks were spelled out to me. Tnbc is one nasty **** of a cancer and needs to handled accordingly. **** slap it harder. Knock it off it's **** so hard that it does not come back up (hopefully never).
Just what every one else says in there post just take it one day at a time even if you didn't have cancer or some thing else we are not promised tomorrow just today so plan and live each day with your husband to the best of your ability and let tomorrow take care of it self.
Hugs Frankie0 -
Renee,missrenee said:Hi Kristie
You've gotten a lot of good advice here. I, too, hated the thought of chemo, but I also began to look at it as killer cells going after that nasty cancer and crushing it. Before cancer, I was one of those who was afraid to even take an aspirin. Once I started treatment though, my thought process changed and I wanted to fight it with everything we could throw at it.
Today is your first day of chemo--you are drawing from your arsenal of weapons and they are attacking the cancer as you read this. Stay strong and focused, stay hydrated, rest as much as you can and take good care of yourself.
Hugs, Renee
I took your advise yesterday. Yes the chemo the enemy of the cancer right now. I was not scared at all yesterday...interesting. Right now I feel like I am I in chemo bubble which it is protecting me from the cancer. I know that as long as I am on chemo for the next 20 weeks I am safe from the tumor growing any bigger or those damn cells floating in my body... DIE CANCER DIE. I even slept well last night.0 -
There are some good statistics as well
The older you are when you get this the better your chances of survival. You fall into the 40 and older category. When I heard this I was ever so greateful to not be any younger than I was. When you think about life and feel bad about not knowing the future remember this. Anyonbe at any given time could be crossing the road and get hit by a bus so there really are no guarentees anyway. Remember you can make plan A and plan B and plan C. Perhaps this will help.0 -
Positive Outlook
Hi Kristi. You have to know you are on the right track and doing all that you can to win the battle. You also reached out to others for support which is another great move.
In April of this year I was diagnosed with TNBC as well. I completed the first round of Chemo which was Ixempra and I was also in a clinical trial to add Erbitux. Next week I go in for a double mastectomy. My doctors are working this aggressively I chose to do the same, electing for the double mastectomy.
You mentioned the day-to-day stuff being hard and I completly agree with you. We are creatures of habit and the best thing is to make a new 'normal', whatever that is to you. Many friends and family keep me focused on the 'grand scheme', but the day-to-day stuff is what we live. Find a routine and stick to it.
The hardest part for me is not being in 'control' of what was happening. It's still hard and probably will be until all the treatments are complete. The best advice I can offer is to be comfortable with the doctors working with you. Listen to what they say and do some research, but not too much. If you look for negative you will find it so look for the positive and that will help you get there. The support team you select will make all the difference.
You can also reach out to the local ACS chapter. Many times they offer support groups and volunteers who will reach out to get you involved. There are also workshops and classes offered on various topics.
Just know you are not alone and there are many TNBC survivors and you are one of them! Keep your mind focused on the positive side of the percentages and keep reaching out. Many blessings sent your way. Take care.0
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