Any Triple Negative People?
Comments
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Trip Neg is also called a diseaseDanielle321 said:Triple Negative
Ha, you think you felt stupid? I had the core biopsy and got a call the next day from the surgeon telling me the "terrible" news that I have cancer. After that had an MRI and then later off to meet the Oncologist. As I'm sitting there thinking he was basically going to tell me what treatment to get after the lumpectomy I was told I would have, starts drawing a normal cancer cell with the 3 receptors and then tells how they are fed by estrogen, progesterone or protein. Then he erases the receptors and said mine doesn't have any. Immediately I thought YAY, that's good news. A split second later I was told it was bad news and called Triple Negative. Then I started crying, and I typically don't do that much. Of course that happens now out of nowhere. So I REALLY felt stupid!
Then I met the surgeon a week or so later and was informed I should have a mastectomy. After meeting with the plastic surgeon and researching I decided to have a bilateral and had to convince the surgeon that is what I want. If I'm going through it now that is one thing I can make darn sure I won't go through again later in life! Plus, my personal feelings are that looking at one normal will make me notice the abnormal more. Just my personal feelings and what will make ME more mentally able to accept it.
So, I just learned from my doc. Did you have the genetic test BRCA? I have Stage 2, grade 3 (be sure to read and understand your pathology report). Just diagnosed in March. Start chemo sometime this week. Had a port put in. It is all very twilight zone. Bless you, stay strong and rely on those who offer to help.0 -
Amen.GregStahl said:Oh
One last vent
If I hear one more person say they know how I feel (or what I am dealing with) because "their great grandmothers 3rd cousins x-wifes sisters daughter-in-law had........" I am gonna scream!!!!!!!!
Sorry....LOL
Or, breast cancer? that is so treatable nowadays,chemo is not so harsh, the port is a breeze - how lucky for you. I want to slap them and invite them inside my body for a few hours.
What are people thinking when they say such things? Minimizing my cancer does not help me.0 -
JohnJohn_32 said:brain metastases
Thanks Judy. Particularly with hindsight, I agree with what you say about all cancers needing to be treated aggressively. I very much regret now that my wife did not accept her doctors' recommendations of chemotherapy and mastectomy, recommendations which were made very strenuously. Perhaps there was a false sense of security by the fact that she was told she had Stage 0 DCIS and a sense that she had caught this early so she did not have to have such drastic treatments like chemotherapy and mastectomy. The oncologist was not a very effective communicator either and basically left us with a handout that had a bunch of confusing statistics on it comparing the survival rates of those who opted for chemotherapy and those who did not, but the statistics were so poorly organized that we were left with multiple interpretations of what they meant until we were next able to meet with the oncologist. That being said, the lesson here is that cancer is extremely serious at any stage because all it takes is one or two cells to break away and spread to another part of the body and put your entire life in jeopardy. This is what has happened to my wife, who went from Stage 0 DCIS and thought she was doing fine all year--even elated that a recent mammogram was all clear--while the cancer had meanwhile metastasized to her brain, suddenly resulting in a Stage 4 brain cancer diagnosis. I encourage every TNBC woman on this site to aggressively pursue chemotherapy and even mastectomy while the cancer is in its infancy because you don't want to go through what my wife is now facing. Clearly this cancer is very aggressive and fast-spreading, and therefore the response to it must also be fast and aggressive. And because TNBC does not generally respond to medication, these patients do not have the option of taking the same drugs that other patients can take if the cancer spreads to the brain--meaning, the only option may be whole brain radiation, which, by itself, is not a very effective treatment. A few recent studies have shown that TNBC has the poorest prognosis of all subsets of breast cancer that has metastasized to the brain, as well as the fact that TNBC is more likely to result in a distant metastasis (such as the brain), and thus results in a shorter overall survival rate. I know my wife and I were scouring the Internet for information when she was trying to decided about chemotherapy, and so, particularly to any husbands who are reading this whose wives are triple negative, please urge your wife to do chemotherapy--she may, even temporarily, only lose her hair; my wife, who now has brain metastasis, is beginning to lose her mind. This is very tragic and I only wish we could go back to a year ago and make different decisions.
My wife was diagnosed 4/20 stage 1 IDC T3 3x- and she refused the doctors reccomendations to have surgery by the end of April. My oldest was graduating HS with honors this past weekend (#3) and she did not want to miss everything because of surgery or show up flat chested and bald. We live in a small town of 8k and news spreads like fire from a discarded match in a field of dry grass so everyone knows already.
Now last week she was in the hospital for 2 days with chest pains behind the breast, bad shoulder pains which makes her hand and lower arm numb, and over the weekend, back pain and headaches.
She has surgery set for June 9th, but my fears with all of this have multiplied exponentially with all the new "things" going on.....I fear the worst.0 -
TNBCGregStahl said:John
My wife was diagnosed 4/20 stage 1 IDC T3 3x- and she refused the doctors reccomendations to have surgery by the end of April. My oldest was graduating HS with honors this past weekend (#3) and she did not want to miss everything because of surgery or show up flat chested and bald. We live in a small town of 8k and news spreads like fire from a discarded match in a field of dry grass so everyone knows already.
Now last week she was in the hospital for 2 days with chest pains behind the breast, bad shoulder pains which makes her hand and lower arm numb, and over the weekend, back pain and headaches.
She has surgery set for June 9th, but my fears with all of this have multiplied exponentially with all the new "things" going on.....I fear the worst.
Yes, my wife had actually had a good mammogram not long before she began having seizures. Even though the lumpectomies and radiation had treated the breast cancer, evidently it wasn't enough to prevent one or more cells migrating beyond the breast to her brain. This is why it is important not just to have periodic mammograms after you have been treated for breast cancer, but actually have full body scans to detect if the cancer has spread anywhere, and to treat it aggressively before it has developed into a substantial tumor. Don't be lulled into a false sense of security by a mammogram alone, particularly with this subset of breast cancer that has a propensity to be aggressive and spread. I wish Danielle best of luck with her chemotherapy and I agree that it is definitely the right thing to do-you must fight this aggressively because it is literally a fight for your life. Likewise, for Greg, I hope that your wife's surgery is successful in stopping this cancer in its tracks. Of course, it was not advisable to delay the treatment, but I am fully aware of the range of emotions that are involved when someone is first confronting this diagnosis. The important thing is that she is now going forward with treatment and I encourage you to be her advocate in aggressively pursuing all available treatment options as she continues to go forward. I am pleased to report that my wife has finally returned for her own treatment and underwent brain radiation last week and is recovering well.0 -
TRIPLE NEGATIVEJohn_32 said:TNBC
Yes, my wife had actually had a good mammogram not long before she began having seizures. Even though the lumpectomies and radiation had treated the breast cancer, evidently it wasn't enough to prevent one or more cells migrating beyond the breast to her brain. This is why it is important not just to have periodic mammograms after you have been treated for breast cancer, but actually have full body scans to detect if the cancer has spread anywhere, and to treat it aggressively before it has developed into a substantial tumor. Don't be lulled into a false sense of security by a mammogram alone, particularly with this subset of breast cancer that has a propensity to be aggressive and spread. I wish Danielle best of luck with her chemotherapy and I agree that it is definitely the right thing to do-you must fight this aggressively because it is literally a fight for your life. Likewise, for Greg, I hope that your wife's surgery is successful in stopping this cancer in its tracks. Of course, it was not advisable to delay the treatment, but I am fully aware of the range of emotions that are involved when someone is first confronting this diagnosis. The important thing is that she is now going forward with treatment and I encourage you to be her advocate in aggressively pursuing all available treatment options as she continues to go forward. I am pleased to report that my wife has finally returned for her own treatment and underwent brain radiation last week and is recovering well.
It's always so sad when doctors recommendations are ignored......regrets are awful.... I, too, am triple negative. Dx April, 09...2.2cm tumor.....had a normal mammogram and ultrasound less than 3 months before finding it myself......I had a lumpectomy in May, 09, CLEAN LYMPH nodes and clean, clear margins..... started 12 weeks of chemo then 6 1/2 weeks radiation....ALL SCANS are negative..as of today I am cancer free. During my experience and being told by two surgeons and two medical oncologists (I believe in second and third, opinions) that triple - bc is very agressive BUT............IT is the one bc that responds VERY VERY well to chemo....I was also told by the two surgeons that today, they are seeing no greater survival with mastectomy than with lumpectomy (unless......multiple tumors exist in the breast or in both)because it is impossible to remove all breast tissue......My radiation extended well under my arm all the way to where the back meets that part of the body.....
CANCER SUCKS! I urge all women, and men, for that matter as there is a rise in male bc, to be diligent in doing SELF EXAMS MONTHLY..........do not rely just on your yearly mammo....
Personally, I wanted anything and everything,that they could throw at this beast! I wanted no regrets down the road........I know personally a woman who refused chemo because she didn't want to lose her hair....she died this past December...We all must take personal responsiblity for our own health.......be an advocate for yourself, or have someone who will be, for you!
I wish everyone the very best.....
Peace be with you!0 -
My very good friend was diagnosed with stage 0 to one in both breasts and likely would take most of breasts anyways so mastectomy a good choice. I have done allot of reading lately because of the comments made about survival rates lumpectomy vs mastectomy. All I have read shows that the majority of reoccurances occur in the first year at the site of cancer removed.MAJW said:TRIPLE NEGATIVE
It's always so sad when doctors recommendations are ignored......regrets are awful.... I, too, am triple negative. Dx April, 09...2.2cm tumor.....had a normal mammogram and ultrasound less than 3 months before finding it myself......I had a lumpectomy in May, 09, CLEAN LYMPH nodes and clean, clear margins..... started 12 weeks of chemo then 6 1/2 weeks radiation....ALL SCANS are negative..as of today I am cancer free. During my experience and being told by two surgeons and two medical oncologists (I believe in second and third, opinions) that triple - bc is very agressive BUT............IT is the one bc that responds VERY VERY well to chemo....I was also told by the two surgeons that today, they are seeing no greater survival with mastectomy than with lumpectomy (unless......multiple tumors exist in the breast or in both)because it is impossible to remove all breast tissue......My radiation extended well under my arm all the way to where the back meets that part of the body.....
CANCER SUCKS! I urge all women, and men, for that matter as there is a rise in male bc, to be diligent in doing SELF EXAMS MONTHLY..........do not rely just on your yearly mammo....
Personally, I wanted anything and everything,that they could throw at this beast! I wanted no regrets down the road........I know personally a woman who refused chemo because she didn't want to lose her hair....she died this past December...We all must take personal responsiblity for our own health.......be an advocate for yourself, or have someone who will be, for you!
I wish everyone the very best.....
Peace be with you!
I have also been going for a lot of tests lately and women tell me all the time how smart I was to have mastectomy only to wish that their sisters or friends would have done the same thing.
I hope to get a copy of a study that has followed women with my aggressive form of cancer and found that there is something to this.
John I am so glad that your wife is recovering well and that you won't have to worry so much about her now that she is doing the treatments. She is one lucky woman to have a husband like you by her side and that will carry you both very far.
Good luck Danielle and hope you are doing well.
Tara0 -
I am so sorry John aboutJohn_32 said:TNBC
Yes, my wife had actually had a good mammogram not long before she began having seizures. Even though the lumpectomies and radiation had treated the breast cancer, evidently it wasn't enough to prevent one or more cells migrating beyond the breast to her brain. This is why it is important not just to have periodic mammograms after you have been treated for breast cancer, but actually have full body scans to detect if the cancer has spread anywhere, and to treat it aggressively before it has developed into a substantial tumor. Don't be lulled into a false sense of security by a mammogram alone, particularly with this subset of breast cancer that has a propensity to be aggressive and spread. I wish Danielle best of luck with her chemotherapy and I agree that it is definitely the right thing to do-you must fight this aggressively because it is literally a fight for your life. Likewise, for Greg, I hope that your wife's surgery is successful in stopping this cancer in its tracks. Of course, it was not advisable to delay the treatment, but I am fully aware of the range of emotions that are involved when someone is first confronting this diagnosis. The important thing is that she is now going forward with treatment and I encourage you to be her advocate in aggressively pursuing all available treatment options as she continues to go forward. I am pleased to report that my wife has finally returned for her own treatment and underwent brain radiation last week and is recovering well.
I am so sorry John about your wife. I had a full body scan to check and was relieved that no other cancer showed up.0 -
John I am surprised the docJohn_32 said:TNBC
Yes, my wife had actually had a good mammogram not long before she began having seizures. Even though the lumpectomies and radiation had treated the breast cancer, evidently it wasn't enough to prevent one or more cells migrating beyond the breast to her brain. This is why it is important not just to have periodic mammograms after you have been treated for breast cancer, but actually have full body scans to detect if the cancer has spread anywhere, and to treat it aggressively before it has developed into a substantial tumor. Don't be lulled into a false sense of security by a mammogram alone, particularly with this subset of breast cancer that has a propensity to be aggressive and spread. I wish Danielle best of luck with her chemotherapy and I agree that it is definitely the right thing to do-you must fight this aggressively because it is literally a fight for your life. Likewise, for Greg, I hope that your wife's surgery is successful in stopping this cancer in its tracks. Of course, it was not advisable to delay the treatment, but I am fully aware of the range of emotions that are involved when someone is first confronting this diagnosis. The important thing is that she is now going forward with treatment and I encourage you to be her advocate in aggressively pursuing all available treatment options as she continues to go forward. I am pleased to report that my wife has finally returned for her own treatment and underwent brain radiation last week and is recovering well.
John I am surprised the doc didn't insist on chemo. My doc plainly told me if I didn't have chemo I would not be here. I have had chemo, surgery, now rad. She said we have to hit this thing head on with everything we can throw at it.0 -
Danielle, Greg, Johnms.sunshine said:John I am surprised the doc
John I am surprised the doc didn't insist on chemo. My doc plainly told me if I didn't have chemo I would not be here. I have had chemo, surgery, now rad. She said we have to hit this thing head on with everything we can throw at it.
Danielle,
You have come to a great place for support. One year ago I came here after my g/f was diagnosed w/tnbc. After extensive research I decided what could help her the best was my support. Many were there to support me. Mimi, Moopy and Aortus (Joe) to name a few. Corrine had the bilateral and the uncomfortable expanders as well. 2 weeks into chemo she got an infection and had one of the expanders removed. Six more months of chemo and the expander was replaced before rads. She held up very well during chemo. Three weeks into rads she was very tired and she had pain in her back. She went in for a petscan to see if the cancer had spread. Good news today!!! No evidence of cancer. No sugar coating, the fight is not over. It is not easy. Just the term "tn" has the tendency to give one a "negative" start to fighting this beast. Do not let that happen. It is just a term, a bad one I might add. A positive attitude, faith and support have been Corrine's backbone during this battle.
John,
Cudos to you for always being there for your wife! It is not an easy task as a caregiver. I learned much from the wonderful ladies on this forum. At the time Joe was the only man I had support from. I am happy to see other men on here helping each other helping thier partners.
Greg,
You have gotten great advice here. If you ever need to chat, please send me a private email. Except for a time when Corrine's family all but kicked me out of her life (they soon did not support her anymore), I have been there for over a year. I would be happy to help where I can.
God's love and my prayers,
Ken0 -
Agree about the term "triple negative"chilibbq said:Danielle, Greg, John
Danielle,
You have come to a great place for support. One year ago I came here after my g/f was diagnosed w/tnbc. After extensive research I decided what could help her the best was my support. Many were there to support me. Mimi, Moopy and Aortus (Joe) to name a few. Corrine had the bilateral and the uncomfortable expanders as well. 2 weeks into chemo she got an infection and had one of the expanders removed. Six more months of chemo and the expander was replaced before rads. She held up very well during chemo. Three weeks into rads she was very tired and she had pain in her back. She went in for a petscan to see if the cancer had spread. Good news today!!! No evidence of cancer. No sugar coating, the fight is not over. It is not easy. Just the term "tn" has the tendency to give one a "negative" start to fighting this beast. Do not let that happen. It is just a term, a bad one I might add. A positive attitude, faith and support have been Corrine's backbone during this battle.
John,
Cudos to you for always being there for your wife! It is not an easy task as a caregiver. I learned much from the wonderful ladies on this forum. At the time Joe was the only man I had support from. I am happy to see other men on here helping each other helping thier partners.
Greg,
You have gotten great advice here. If you ever need to chat, please send me a private email. Except for a time when Corrine's family all but kicked me out of her life (they soon did not support her anymore), I have been there for over a year. I would be happy to help where I can.
God's love and my prayers,
Ken
The name for this variant of the disease is really awful. We should start calling it something more PC like "estrogen-challenged" breast cancer!0 -
John,John_32 said:Agree about the term "triple negative"
The name for this variant of the disease is really awful. We should start calling it something more PC like "estrogen-challenged" breast cancer!
I like that! How do we
John,
I like that! How do we convince the Medical community to change the term? How about a good ol' grass roots campaign. Ken0 -
Right back atcha, Kenchilibbq said:John,
I like that! How do we
John,
I like that! How do we convince the Medical community to change the term? How about a good ol' grass roots campaign. Ken
It is great to hear from you again, Ken - and even better to know that Corrine is cancer free and nearly done with her treatments. I didn't know for sure that everyone else would melt away from her, but I knew for a fact that you would always be there for her regardless... just as you will *always* be there for her regardless.
It's not my place to give information about Ken and Corrine's personal life, but folks on this board need to know that *both* of them warriors. Corrine is fighting the fight we here on this board all know too well, but Ken has actually had to fight just to be at his lady's side through all of this battle. They have both, thank God, been victorious... here's hoping and praying that their reward will be a long and happy life together.
And let me say, for the record, to my fellow caregivers that none of us could ask for a better role model than you, Ken.
Best,
Joe0 -
Continuing to send prayersJohn_32 said:brain metastases
Thanks Judy. Particularly with hindsight, I agree with what you say about all cancers needing to be treated aggressively. I very much regret now that my wife did not accept her doctors' recommendations of chemotherapy and mastectomy, recommendations which were made very strenuously. Perhaps there was a false sense of security by the fact that she was told she had Stage 0 DCIS and a sense that she had caught this early so she did not have to have such drastic treatments like chemotherapy and mastectomy. The oncologist was not a very effective communicator either and basically left us with a handout that had a bunch of confusing statistics on it comparing the survival rates of those who opted for chemotherapy and those who did not, but the statistics were so poorly organized that we were left with multiple interpretations of what they meant until we were next able to meet with the oncologist. That being said, the lesson here is that cancer is extremely serious at any stage because all it takes is one or two cells to break away and spread to another part of the body and put your entire life in jeopardy. This is what has happened to my wife, who went from Stage 0 DCIS and thought she was doing fine all year--even elated that a recent mammogram was all clear--while the cancer had meanwhile metastasized to her brain, suddenly resulting in a Stage 4 brain cancer diagnosis. I encourage every TNBC woman on this site to aggressively pursue chemotherapy and even mastectomy while the cancer is in its infancy because you don't want to go through what my wife is now facing. Clearly this cancer is very aggressive and fast-spreading, and therefore the response to it must also be fast and aggressive. And because TNBC does not generally respond to medication, these patients do not have the option of taking the same drugs that other patients can take if the cancer spreads to the brain--meaning, the only option may be whole brain radiation, which, by itself, is not a very effective treatment. A few recent studies have shown that TNBC has the poorest prognosis of all subsets of breast cancer that has metastasized to the brain, as well as the fact that TNBC is more likely to result in a distant metastasis (such as the brain), and thus results in a shorter overall survival rate. I know my wife and I were scouring the Internet for information when she was trying to decided about chemotherapy, and so, particularly to any husbands who are reading this whose wives are triple negative, please urge your wife to do chemotherapy--she may, even temporarily, only lose her hair; my wife, who now has brain metastasis, is beginning to lose her mind. This is very tragic and I only wish we could go back to a year ago and make different decisions.
Continuing to send prayers for your wife John and you!0 -
Kenchilibbq said:Danielle, Greg, John
Danielle,
You have come to a great place for support. One year ago I came here after my g/f was diagnosed w/tnbc. After extensive research I decided what could help her the best was my support. Many were there to support me. Mimi, Moopy and Aortus (Joe) to name a few. Corrine had the bilateral and the uncomfortable expanders as well. 2 weeks into chemo she got an infection and had one of the expanders removed. Six more months of chemo and the expander was replaced before rads. She held up very well during chemo. Three weeks into rads she was very tired and she had pain in her back. She went in for a petscan to see if the cancer had spread. Good news today!!! No evidence of cancer. No sugar coating, the fight is not over. It is not easy. Just the term "tn" has the tendency to give one a "negative" start to fighting this beast. Do not let that happen. It is just a term, a bad one I might add. A positive attitude, faith and support have been Corrine's backbone during this battle.
John,
Cudos to you for always being there for your wife! It is not an easy task as a caregiver. I learned much from the wonderful ladies on this forum. At the time Joe was the only man I had support from. I am happy to see other men on here helping each other helping thier partners.
Greg,
You have gotten great advice here. If you ever need to chat, please send me a private email. Except for a time when Corrine's family all but kicked me out of her life (they soon did not support her anymore), I have been there for over a year. I would be happy to help where I can.
God's love and my prayers,
Ken
Thanks. I have received great advice from these couragous ladies. I thank all of them for shareing thier stories.
Ruby had her bilateral June 9th and all went well for the most part. had some post-op issues with breathing and her BP, but all is fine. Biopsy report came back clear which is a BIG relief for both of us. Surgeon tomorrow and hopefully get the drains removed and Onc on the 22nd to map out treatment. I hope that with everything being clear she will only have to do the minimum chemo treaments even though she is triple neg.
Greg0 -
hi everyoneDianeBC said:Continuing to send prayers
Continuing to send prayers for your wife John and you!
Thanks Diane for the good wishes. To Ken, Joe, Greg, it seems we are all members of a club we never wanted to be in. I can certainly understand some of what Ken is going through with his girlfriend's family as well. As I mentioned above, my wife seemed to have gone into some sort steroid psychosis as a result of the dexamethasone she was taking to reduce her severe brain swelling after she was diagnosed with brain metastasis. Her behavior became extremely aggressive and hostile, to the point of throwing me out of the apartment. I stayed in a hotel after that and for weeks afterward it became almost impossible to contact her as her family pretty much circled the wagons around her and were trying to cut me out of her life. Her parents are elderly immigrants from Asia, and don't seem particularly knowledgeable about the medical aspects of this diagnosis, so they took her bizarre outbursts against me as somehow rational and provoked, when in fact she was clearly out of her mind on powerful mind-altering steroids. Unfortunately, because I lost my job in this awful recession, I did not have the funds to continue staying in a hotel and my wife is now living at her parents' house-where I am persons non grata because her parents believed her crazed emotional state was the result of how I was treating her instead of the result of the numerous lesions in her brain and the dangerously high dosage of steroids that she was on. Cancer is a nightmare to begin with, but once it spreads to the brain and starts altering someone's personality, it's like you are losing the person that you love before you have actually lost them.0 -
John,John_32 said:hi everyone
Thanks Diane for the good wishes. To Ken, Joe, Greg, it seems we are all members of a club we never wanted to be in. I can certainly understand some of what Ken is going through with his girlfriend's family as well. As I mentioned above, my wife seemed to have gone into some sort steroid psychosis as a result of the dexamethasone she was taking to reduce her severe brain swelling after she was diagnosed with brain metastasis. Her behavior became extremely aggressive and hostile, to the point of throwing me out of the apartment. I stayed in a hotel after that and for weeks afterward it became almost impossible to contact her as her family pretty much circled the wagons around her and were trying to cut me out of her life. Her parents are elderly immigrants from Asia, and don't seem particularly knowledgeable about the medical aspects of this diagnosis, so they took her bizarre outbursts against me as somehow rational and provoked, when in fact she was clearly out of her mind on powerful mind-altering steroids. Unfortunately, because I lost my job in this awful recession, I did not have the funds to continue staying in a hotel and my wife is now living at her parents' house-where I am persons non grata because her parents believed her crazed emotional state was the result of how I was treating her instead of the result of the numerous lesions in her brain and the dangerously high dosage of steroids that she was on. Cancer is a nightmare to begin with, but once it spreads to the brain and starts altering someone's personality, it's like you are losing the person that you love before you have actually lost them.
It is easy to say all of the "standard" responses, "be strong", "don't give up", blah, blah. Honestly, I have a hard time putting into words how your story makes me feel. First I cried, then I prayed. I thought I had it hard with family. What I can say helped me was to keep my faith, kept in contact thru people other than family, support from friends and prayer.
Maybe now that she has been with her parents for awhile, they will see, as you did, her reactions are truely from the medications. I pray God will open thier eyes to the truth.
If you ever want to chat, please send me a private message. I will send you my phone number.
Keep the faith brother!
Ken0 -
So sorry to hearJohn_32 said:hi everyone
Thanks Diane for the good wishes. To Ken, Joe, Greg, it seems we are all members of a club we never wanted to be in. I can certainly understand some of what Ken is going through with his girlfriend's family as well. As I mentioned above, my wife seemed to have gone into some sort steroid psychosis as a result of the dexamethasone she was taking to reduce her severe brain swelling after she was diagnosed with brain metastasis. Her behavior became extremely aggressive and hostile, to the point of throwing me out of the apartment. I stayed in a hotel after that and for weeks afterward it became almost impossible to contact her as her family pretty much circled the wagons around her and were trying to cut me out of her life. Her parents are elderly immigrants from Asia, and don't seem particularly knowledgeable about the medical aspects of this diagnosis, so they took her bizarre outbursts against me as somehow rational and provoked, when in fact she was clearly out of her mind on powerful mind-altering steroids. Unfortunately, because I lost my job in this awful recession, I did not have the funds to continue staying in a hotel and my wife is now living at her parents' house-where I am persons non grata because her parents believed her crazed emotional state was the result of how I was treating her instead of the result of the numerous lesions in her brain and the dangerously high dosage of steroids that she was on. Cancer is a nightmare to begin with, but once it spreads to the brain and starts altering someone's personality, it's like you are losing the person that you love before you have actually lost them.
So sorry to hear how crazy things have become for you. I hope your in-laws soon come around to see how much they all need you. Would it help to have your wife's doctor intervene and explain to them what is happening?0 -
Praying for your wife JohnJohn_32 said:brain metastases
My wife also has TNBC. She found the lump on our honeymoon and was diagnosed shortly thereafter, January 2009. She declined chemo and mastectomy, against the advice of doctors, but did have two lumpectomies for her Stage 0 DCIS, as well as radiation of her breast. But over the last several months I began noticing violent mood swings and outbursts of anger in which she just seemed to take on an entirely different personality. And about two months ago she began having minor seizures on one side of her body that would last for about 30 seconds. EMS that was called to the house after one of these episodes said it was probably an anxiety attack, but after the seizures came with increasing frequency she eventually went to the ER where they did a CAT scan of her brain. It revealed several tumors on one side of her brain and showed that her brain was very swollen. They gave her a high dose of a powerful steroid (Dexamethasone) to reduce the swelling and control the seizures, but she continued to have violent rageful outbursts. The doctors said that whole brain radiation was the only treatment they could offer her at this stage. I have read on the Internet a number of studies and they seem to all say that whole brain radiation can result in survival of an average of 5-6 months after the diagnosis, but that patients who do nothing may only live a month past the brain tumor diagnosis. Anyway, we have been separated for the past couple of weeks because she threw me out of the apartment during one of her bizarre outbursts of anger and has refused to contact me since then, nor has her family allowed me to contact her. Now it seems that she has suddenly flown off to Europe on a business trip and to visit her daughter (from a previous marriage) when she was scheduled to undergo whole brain radiation. Needless to say this is very distressing and I was wondering if anyone else knows of these kinds of personality changes and bizarre behavior in TNBC patients who develop brain metastases?
Praying for your wife John and you!
Hugs, Angie0 -
Triple Negativearkansasgirl said:RARE CANCER AND TRIPLE NEG
Hi Danielle
Welcome to the PINK sisters club even though not by choice, you couldn't find a more wonderful support group anywhere but here. I'm going to try to be as brief as possible and if you have any questions please feel free to ask. I was diagnoise March 09 with a
very rare type of BC. It is called MARTRIX PRODUCING CARCINOMA. Only about 1% of all the women in the world has this type. This cancer does not
respond to chemo or radiation. In April 09 - 1 year ago today I had both breasts removed.
I had a tumor that went from 2cm to 5cm in 4 weeks. Right breast at 11:00 position. I took
6 treatments of chemo every 3 weeks. I guess I had my ears plugged when they said triple
negative too. Well in March 2010 went to Houston to MD Anderson for 2nd opinion and that
is when I found out more about triple negative. It's bad and rare. About 15% of all women
have this. Chemo and radiation does have effect on it. If is returns it's usually within
2 to 2 1/2 years and targets brain, bones, liver, and lungs.
I saved the best for last. AS OF FEB 1ST I'M CANCER FREE. It has been a long hard year but
I made it. I took the strongest chemo they could give me which landed me in the hospital
2 times because of white blood count dropping. Lost all my hair and I can tell you my hair
has come back great and soft as can be. I elected to have both breast removed because I didnt want to give it a chance to go to the left side. Also my lymph nodes were all negative.
I'm in Texas but Arkansas is my home. So sorry I'm not close but to let you know from
this site I met another lady with my type of cancer all the way from ENGLAND and we have
become best friends.
So with all that said you've got to stay strong, get an attitude, and stay positive.
Here's my motto: THE CANCER WON THE 1ST BATTLE AND I'VE WON THE 2ND BUT THE WAR IS NOT OVER FOR I WILL NOT GIVE UP.
You will be in my prayers.
God Bless You,
ARKANSASGIRL
I was really encouraged by your strength. I am 60 years old. I had a right radical mastectomy in 2006 that was diagnosed as triple negative. It was confined to a 2cm tumor and not in any lympnodes. Underwent chemo for 6 months. Other than hair loss and weakness no real problems. For four years I have been doing great then one day I have a chest cold and xrays show a very small growth. On Sept 1st I had a thorocotomy to remove part of my lungs lower right lobe. Tumor very small and no sign of any cancer in the area around it and it is triple negative. Friends and family just keep saying oh you will be fine look how easy chemo was before. It's not the chemo that scares me so but where will it show up the next time and will it be treatable. My surgery has been really painful and I will not be able to start chemo until Oct. I feel like a lost cause and don't know how to go on. Any prayers or words of encouragement you may have would be great.
Disappointed in Tennessee0 -
Triple Negativearkansasgirl said:RARE CANCER AND TRIPLE NEG
Hi Danielle
Welcome to the PINK sisters club even though not by choice, you couldn't find a more wonderful support group anywhere but here. I'm going to try to be as brief as possible and if you have any questions please feel free to ask. I was diagnoise March 09 with a
very rare type of BC. It is called MARTRIX PRODUCING CARCINOMA. Only about 1% of all the women in the world has this type. This cancer does not
respond to chemo or radiation. In April 09 - 1 year ago today I had both breasts removed.
I had a tumor that went from 2cm to 5cm in 4 weeks. Right breast at 11:00 position. I took
6 treatments of chemo every 3 weeks. I guess I had my ears plugged when they said triple
negative too. Well in March 2010 went to Houston to MD Anderson for 2nd opinion and that
is when I found out more about triple negative. It's bad and rare. About 15% of all women
have this. Chemo and radiation does have effect on it. If is returns it's usually within
2 to 2 1/2 years and targets brain, bones, liver, and lungs.
I saved the best for last. AS OF FEB 1ST I'M CANCER FREE. It has been a long hard year but
I made it. I took the strongest chemo they could give me which landed me in the hospital
2 times because of white blood count dropping. Lost all my hair and I can tell you my hair
has come back great and soft as can be. I elected to have both breast removed because I didnt want to give it a chance to go to the left side. Also my lymph nodes were all negative.
I'm in Texas but Arkansas is my home. So sorry I'm not close but to let you know from
this site I met another lady with my type of cancer all the way from ENGLAND and we have
become best friends.
So with all that said you've got to stay strong, get an attitude, and stay positive.
Here's my motto: THE CANCER WON THE 1ST BATTLE AND I'VE WON THE 2ND BUT THE WAR IS NOT OVER FOR I WILL NOT GIVE UP.
You will be in my prayers.
God Bless You,
ARKANSASGIRL
I was really encouraged by your strength. I am 60 years old. I had a right radical mastectomy in 2006 that was diagnosed as triple negative. It was confined to a 2cm tumor and not in any lympnodes. Underwent chemo for 6 months. Other than hair loss and weakness no real problems. For four years I have been doing great then one day I have a chest cold and xrays show a very small growth. On Sept 1st I had a thorocotomy to remove part of my lungs lower right lobe. Tumor very small and no sign of any cancer in the area around it and it is triple negative. Friends and family just keep saying oh you will be fine look how easy chemo was before. It's not the chemo that scares me so but where will it show up the next time and will it be treatable. My surgery has been really painful and I will not be able to start chemo until Oct. I feel like a lost cause and don't know how to go on. Any prayers or words of encouragement you may have would be great.
Disappointed in Tennessee0
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