Please do not wait
Recently I came across of several posts, where people have to delay start of the treatment for various reasons. While I completely understand how difficult is to make decisions about surgeries, reconstruction, Chemo, and radiation I am very concerned about consequences of the delays in cancer treatment. You need to be your own advocate and navigator of your treatment.
Being a 2 years survivor from a very aggressive Stage III cancer, I am bugging you:"Please do not wait!!!!".
New Flower
Comments
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You aren't bugging me.
New Flower you aren't bugging me. But you are scaring me to death.I have 2 doctors one a surgeon and one a genetics specialist telling me I have time because my stereostatic and repeat mammogram shows dcis STAGE 0 GRADE 2.It is confined to a small area. In the duct.A lot was removed with just the biopsy. I know it can spread but as of now it is a slow spreader. I watched my Mom make rapid decisions based on emotion not facts and it destroyed her mind. She is mentally unstable now.I do not have a mother anymore even though she is still alive. I will not follow in her footsteps.I am tired of waiting. That is why I have started the discussion what is the longest you had to wait for surgery. My Mom had a very aggressive form of breast cancer. I know the facts and what can happen. I have a heart condition that makes it so my cardio wants me to have as few surgeries as possible. My danger does not lie in the operating room but in the recovery room. I really appreciate that you care and are trying to save lives. But please be careful of doing more damage by scaring newbies like me. It adds more stress. I know your hearts in the right place. I hope you understand why I am saying this to you. The best thing to say to a newbie is "do what is best for you." A very less terrifing statement.Us newbies are still reeling and trying to deal with the uncertancy of a terrifing dx. We need information. Lots of it.No one wants to go on the table not knowing everything they can about their cancer and getting the best results. But we also need to feel safe to read on this site.Everyone's situation is unique as is yours to mine. Please understand and do not take offense I know your heart is in the right place. But the world is terrifing for me and I am sure there a lot more then me that feel the same. You really scared me enough to call my doc again..
Cindy Ann0 -
Cindy AnnCindy Ann said:You aren't bugging me.
New Flower you aren't bugging me. But you are scaring me to death.I have 2 doctors one a surgeon and one a genetics specialist telling me I have time because my stereostatic and repeat mammogram shows dcis STAGE 0 GRADE 2.It is confined to a small area. In the duct.A lot was removed with just the biopsy. I know it can spread but as of now it is a slow spreader. I watched my Mom make rapid decisions based on emotion not facts and it destroyed her mind. She is mentally unstable now.I do not have a mother anymore even though she is still alive. I will not follow in her footsteps.I am tired of waiting. That is why I have started the discussion what is the longest you had to wait for surgery. My Mom had a very aggressive form of breast cancer. I know the facts and what can happen. I have a heart condition that makes it so my cardio wants me to have as few surgeries as possible. My danger does not lie in the operating room but in the recovery room. I really appreciate that you care and are trying to save lives. But please be careful of doing more damage by scaring newbies like me. It adds more stress. I know your hearts in the right place. I hope you understand why I am saying this to you. The best thing to say to a newbie is "do what is best for you." A very less terrifing statement.Us newbies are still reeling and trying to deal with the uncertancy of a terrifing dx. We need information. Lots of it.No one wants to go on the table not knowing everything they can about their cancer and getting the best results. But we also need to feel safe to read on this site.Everyone's situation is unique as is yours to mine. Please understand and do not take offense I know your heart is in the right place. But the world is terrifing for me and I am sure there a lot more then me that feel the same. You really scared me enough to call my doc again..
Cindy Ann
Sorry if I scared you. I do not want to scary newbies and very sorry if I did. I understand that every your situation is unique. Plus everything in breast cancer is a personal choice . I am glad that you are going to talk to your doctor.
Hugs,
New Flower0 -
it's not easyCindy Ann said:You aren't bugging me.
New Flower you aren't bugging me. But you are scaring me to death.I have 2 doctors one a surgeon and one a genetics specialist telling me I have time because my stereostatic and repeat mammogram shows dcis STAGE 0 GRADE 2.It is confined to a small area. In the duct.A lot was removed with just the biopsy. I know it can spread but as of now it is a slow spreader. I watched my Mom make rapid decisions based on emotion not facts and it destroyed her mind. She is mentally unstable now.I do not have a mother anymore even though she is still alive. I will not follow in her footsteps.I am tired of waiting. That is why I have started the discussion what is the longest you had to wait for surgery. My Mom had a very aggressive form of breast cancer. I know the facts and what can happen. I have a heart condition that makes it so my cardio wants me to have as few surgeries as possible. My danger does not lie in the operating room but in the recovery room. I really appreciate that you care and are trying to save lives. But please be careful of doing more damage by scaring newbies like me. It adds more stress. I know your hearts in the right place. I hope you understand why I am saying this to you. The best thing to say to a newbie is "do what is best for you." A very less terrifing statement.Us newbies are still reeling and trying to deal with the uncertancy of a terrifing dx. We need information. Lots of it.No one wants to go on the table not knowing everything they can about their cancer and getting the best results. But we also need to feel safe to read on this site.Everyone's situation is unique as is yours to mine. Please understand and do not take offense I know your heart is in the right place. But the world is terrifing for me and I am sure there a lot more then me that feel the same. You really scared me enough to call my doc again..
Cindy Ann
everyone is different....they told me i had dcis after my stereotactic biopsy too...when they went in to do lumpectomy they found 2 tumors and cancer thru out the breast...neither tumor showed up on mri or mamo...they removed original area and sewed me back up....i needed masectomy....i'm not trying to scare you but these tests don't show everything... i was at a breast cancer center with the director as my surgeon....until they open you up only God knows what is really there...be careful is all i'm saying0 -
New FlowerNew Flower said:Cindy Ann
Sorry if I scared you. I do not want to scary newbies and very sorry if I did. I understand that every your situation is unique. Plus everything in breast cancer is a personal choice . I am glad that you are going to talk to your doctor.
Hugs,
New Flower
I had a good long talk with my surgeon. Thanks to you. So your heart was in the right place and caused me to call her. I got my answers and will wait as they are asking.Have to get healthy, referral to a plastic surgeon, and a onc now.If genetic testing is positive they will do a bilat.She will be out of town and while she is I will be consulting with 2 other specialists.Not stalled.. You helped me get the ball rolling.. Thank you for understanding and not taking offense. There was none mean't.. I just got very scared..In some cases fear is good.. At least in mine.For others not. Also called my Internist and said get me in for a full work up now why the H am I so sick..I see her at 1p today!! So you did good.
Cindy Ann0 -
We are trying!!!
We are trying to move fast, but it seems like everyone is moving in slow motion. My wife's lumpectamy was done less than three weeks after diagnosis, but since then,waiting for ER/PR pathology to be redone; and then waiting for the Oncotype results; it feels like forever. It's seven weeks now past the surgery and it will be eight or nine from the surgery until treatment starts. It's driving my wife to the brink!! 1st and 2nd opinions on chemo regimen today and tomorrow.0 -
Wendy is right. You reallyHubby said:We are trying!!!
We are trying to move fast, but it seems like everyone is moving in slow motion. My wife's lumpectamy was done less than three weeks after diagnosis, but since then,waiting for ER/PR pathology to be redone; and then waiting for the Oncotype results; it feels like forever. It's seven weeks now past the surgery and it will be eight or nine from the surgery until treatment starts. It's driving my wife to the brink!! 1st and 2nd opinions on chemo regimen today and tomorrow.
Wendy is right. You really don't know everything until you go for surgery. Your diagnosis can change, stage, grade, whether you need chemo etc. The final pathology report after your surgery is what actually tells you everything. And, if the 1st or 2nd or 3rd opinion from an oncologist didn't seem right, I would go for a 4th, 5th or whatever it would take. You don't mess around with your life. Good luck!
Hugs, Debby0 -
That is why I insist on an open, surgical biopsy.DebbyM said:Wendy is right. You really
Wendy is right. You really don't know everything until you go for surgery. Your diagnosis can change, stage, grade, whether you need chemo etc. The final pathology report after your surgery is what actually tells you everything. And, if the 1st or 2nd or 3rd opinion from an oncologist didn't seem right, I would go for a 4th, 5th or whatever it would take. You don't mess around with your life. Good luck!
Hugs, Debby
That way the lump is removed plus tissue surrounding the area. If the margins are clean you have alredy had the lumpectomy. One of my margins was not completly as clear as my surgeon liked so I had a re-exisonal, wide biopsy and Sentinel Node Biopsy. Nodes clear, one margin not so clear. Chose a single, simple mastecomy. The first biopsy was done with IV Sedation the second one with general anesthesia. With the first biopsy, they had my type (triple neg), stage, 2A and Grade 3. From my finding the lump on 6-4-09 the mastecomy was 9-11-09.
I do not like the other kind of biopsies (my preference) because of all the issues I read here. I want it out and dx immediately.
We are all scared stupid when we first find the lump. But if we are so terrified we can't think, then we need to inquire about getting some anti-aniexty medication to help with sleep and getting a handle on our emotions during the daytime. It was a lifesaver for me. While I looked at this discussion board all summer, I didn't join til 8-09 and then was too shy to post much. It was comforting to see I wasn't alone and to see what other's were doing treatment wise. I educated myself regarding the meaning of staging, procedures, reading mammogram reports, what a malignant tumor would look like on the ultra sound (I knew the day the ultra-sound was done, I saw it) all on-line thru Google. I really like the Mayo-Clinic sites the best.
While we all give our opinions and histories, we still can't compare ourselves to each other due to everyone being different, different health issues etc. But we can compare how we are treated by the medical communmity. But here again, I may not be offended by something that sends someone else up the wall, so that's a difference of opinion as well. But when someone here on the board is questioning whether or not they should have chemo etc. I will give my honest opinion and in plain language.
Oh, I didn't have the Braca test, I have no daughters and my son has no children and is never going to hve any and I was and still am comfortable with my decision.
The waiting is the hardest part...we see the TV shows and they get everything "done" in an hour and we always hear that we have to do everything ASAP, and I agree with that. And I feel an open, surgical biopsy was the best for me because there was no delay with Pet Scans or MRI's etc. But that's me, not necessarily someone else.
Just My Opinion, Judy :-)0 -
Do Not WaitSkeezie said:That is why I insist on an open, surgical biopsy.
That way the lump is removed plus tissue surrounding the area. If the margins are clean you have alredy had the lumpectomy. One of my margins was not completly as clear as my surgeon liked so I had a re-exisonal, wide biopsy and Sentinel Node Biopsy. Nodes clear, one margin not so clear. Chose a single, simple mastecomy. The first biopsy was done with IV Sedation the second one with general anesthesia. With the first biopsy, they had my type (triple neg), stage, 2A and Grade 3. From my finding the lump on 6-4-09 the mastecomy was 9-11-09.
I do not like the other kind of biopsies (my preference) because of all the issues I read here. I want it out and dx immediately.
We are all scared stupid when we first find the lump. But if we are so terrified we can't think, then we need to inquire about getting some anti-aniexty medication to help with sleep and getting a handle on our emotions during the daytime. It was a lifesaver for me. While I looked at this discussion board all summer, I didn't join til 8-09 and then was too shy to post much. It was comforting to see I wasn't alone and to see what other's were doing treatment wise. I educated myself regarding the meaning of staging, procedures, reading mammogram reports, what a malignant tumor would look like on the ultra sound (I knew the day the ultra-sound was done, I saw it) all on-line thru Google. I really like the Mayo-Clinic sites the best.
While we all give our opinions and histories, we still can't compare ourselves to each other due to everyone being different, different health issues etc. But we can compare how we are treated by the medical communmity. But here again, I may not be offended by something that sends someone else up the wall, so that's a difference of opinion as well. But when someone here on the board is questioning whether or not they should have chemo etc. I will give my honest opinion and in plain language.
Oh, I didn't have the Braca test, I have no daughters and my son has no children and is never going to hve any and I was and still am comfortable with my decision.
The waiting is the hardest part...we see the TV shows and they get everything "done" in an hour and we always hear that we have to do everything ASAP, and I agree with that. And I feel an open, surgical biopsy was the best for me because there was no delay with Pet Scans or MRI's etc. But that's me, not necessarily someone else.
Just My Opinion, Judy :-)
As the husband of someone whose breast cancer has recently metastasized to her brain, I find Cindy Ann's comments, though understandable, also somewhat alarming. You say that your cancer is "confined to a small area" and the basis for this assertion is apparently a mammogram. My wife also recently had a mammogram-a follow up to DCIS that was treated with lumpectomy and radiation last year-which did not reveal the presence of any cancer. She was very happy after getting this result ... until she began having seizures in the following weeks. The mammogram had failed to reveal that the cancer had already spread outside of her breast to her brain. I know you say that you need time to collect lots of information to inform your decisions about treatment, but, after seeing my wife go through this same process, and seeing her frequently delay important treatment decisions, I really think the only "information" that you really need is information that you already know: that there is cancer in your body and that it can spread throughout your body if you do not begin to fight it aggressively. If you have a heart condition, or other ailments, then naturally you will want to consult with your doctors to find out if these conditions will be exacerbated by your cancer treatments. But at the end of the day, you will still have to go forward with your treatments if you want to increase your likelihood of survival. So if the treatments are inevitable, better to have them while the cancer is in its infancy than after it has already metastasized beyond the breast. And if anything I have written has scared, in some way, I hope that it has, so that you take this as the very serious threat to your life that it is. There is really nothing wrong with fear. It is a great motivator. Someone said that courage is not the absence of fear, but rather the strength to take action in the face of it.0 -
You are right your do not know me!John_32 said:Do Not Wait
As the husband of someone whose breast cancer has recently metastasized to her brain, I find Cindy Ann's comments, though understandable, also somewhat alarming. You say that your cancer is "confined to a small area" and the basis for this assertion is apparently a mammogram. My wife also recently had a mammogram-a follow up to DCIS that was treated with lumpectomy and radiation last year-which did not reveal the presence of any cancer. She was very happy after getting this result ... until she began having seizures in the following weeks. The mammogram had failed to reveal that the cancer had already spread outside of her breast to her brain. I know you say that you need time to collect lots of information to inform your decisions about treatment, but, after seeing my wife go through this same process, and seeing her frequently delay important treatment decisions, I really think the only "information" that you really need is information that you already know: that there is cancer in your body and that it can spread throughout your body if you do not begin to fight it aggressively. If you have a heart condition, or other ailments, then naturally you will want to consult with your doctors to find out if these conditions will be exacerbated by your cancer treatments. But at the end of the day, you will still have to go forward with your treatments if you want to increase your likelihood of survival. So if the treatments are inevitable, better to have them while the cancer is in its infancy than after it has already metastasized beyond the breast. And if anything I have written has scared, in some way, I hope that it has, so that you take this as the very serious threat to your life that it is. There is really nothing wrong with fear. It is a great motivator. Someone said that courage is not the absence of fear, but rather the strength to take action in the face of it.
I am not putting off surgery.I actually am not afraid of surgery. You are more scary then surgery. I am making a educated decision based on the best medical cancer experts in my area. I cannot control how long genetic testing takes or if my surgeon goes on vacation. But I can make my own choices. I have done so today. One of them is to not let people scare me half to death with doom and gloom. No one ever does anything right when they use fear as their guide.My father was a decorated war hero and told me for years he never let fear guide him. He lead his platoon by his head not his heart. He lost very few men because of that. So I am sorry about your wife.I am glad my husband is educating himself and not trying to scare me into a surgery that would a even bigger waste of time if I need a more intensive surgery. I would like it done all at once. Not be cut piece by piece.By the way my Mom did it piece by piece and she lived through it but went through Hell. It never went to her brain it was a very aggresive cancer.Her tumor was the size of a lemon!!!She never missed a mammogram. Never! I would rather have both breasts gone then a lumpectomy if that is what I truly need. I am a nurse and believe me I know exactly what cancer can do and where it go. I appreciate your writing but all your doing is scaring people to death. That is not helping anyone nor helping your own feeling of helplessness at your wife's cancer and where it has spread.The main thing I thought this site was about caring for others and supporting others. Not hurting them and then not caring if you scare them into thinking like you. I am so disappointed in this whole thing. Most of the people here have been wonderful and very careful in how they choose their words. Unfortunately you and a few others have not. Since you do not have breast cancer who are you to scare me or anyone else. Hope you feel good for making me cry. Because you did. I am glad my husband has become my rock and read your posting and thought you cruel. I agree.. I will not follow your postings anymore,. New Flower your heart was in the right place you to can benefit from this post.. Scaring people never helps anyone. It causes them pain. I am sure you do not want to hurt people. As I said I am sure you mean't well.I will never be made to do what others think is right for me a person you don't even know.I can speak my mind too. So I have actully wasted precious time on this mess. But John's harsh words are suspect to me.. I have to wonder who he is..0 -
give john a breakCindy Ann said:You are right your do not know me!
I am not putting off surgery.I actually am not afraid of surgery. You are more scary then surgery. I am making a educated decision based on the best medical cancer experts in my area. I cannot control how long genetic testing takes or if my surgeon goes on vacation. But I can make my own choices. I have done so today. One of them is to not let people scare me half to death with doom and gloom. No one ever does anything right when they use fear as their guide.My father was a decorated war hero and told me for years he never let fear guide him. He lead his platoon by his head not his heart. He lost very few men because of that. So I am sorry about your wife.I am glad my husband is educating himself and not trying to scare me into a surgery that would a even bigger waste of time if I need a more intensive surgery. I would like it done all at once. Not be cut piece by piece.By the way my Mom did it piece by piece and she lived through it but went through Hell. It never went to her brain it was a very aggresive cancer.Her tumor was the size of a lemon!!!She never missed a mammogram. Never! I would rather have both breasts gone then a lumpectomy if that is what I truly need. I am a nurse and believe me I know exactly what cancer can do and where it go. I appreciate your writing but all your doing is scaring people to death. That is not helping anyone nor helping your own feeling of helplessness at your wife's cancer and where it has spread.The main thing I thought this site was about caring for others and supporting others. Not hurting them and then not caring if you scare them into thinking like you. I am so disappointed in this whole thing. Most of the people here have been wonderful and very careful in how they choose their words. Unfortunately you and a few others have not. Since you do not have breast cancer who are you to scare me or anyone else. Hope you feel good for making me cry. Because you did. I am glad my husband has become my rock and read your posting and thought you cruel. I agree.. I will not follow your postings anymore,. New Flower your heart was in the right place you to can benefit from this post.. Scaring people never helps anyone. It causes them pain. I am sure you do not want to hurt people. As I said I am sure you mean't well.I will never be made to do what others think is right for me a person you don't even know.I can speak my mind too. So I have actully wasted precious time on this mess. But John's harsh words are suspect to me.. I have to wonder who he is..
he may also have an opinion...i think when something awlful happens like what is happening to his wife right now, as he watches her he doesn't get the waiting...i wouldn't and you probably wouldn't either
no one is right or wrong we are all different and do what is best for us as individuals....
my prayers will go out to both of you and your families0 -
Lump vs Mast SkeezieSkeezie said:That is why I insist on an open, surgical biopsy.
That way the lump is removed plus tissue surrounding the area. If the margins are clean you have alredy had the lumpectomy. One of my margins was not completly as clear as my surgeon liked so I had a re-exisonal, wide biopsy and Sentinel Node Biopsy. Nodes clear, one margin not so clear. Chose a single, simple mastecomy. The first biopsy was done with IV Sedation the second one with general anesthesia. With the first biopsy, they had my type (triple neg), stage, 2A and Grade 3. From my finding the lump on 6-4-09 the mastecomy was 9-11-09.
I do not like the other kind of biopsies (my preference) because of all the issues I read here. I want it out and dx immediately.
We are all scared stupid when we first find the lump. But if we are so terrified we can't think, then we need to inquire about getting some anti-aniexty medication to help with sleep and getting a handle on our emotions during the daytime. It was a lifesaver for me. While I looked at this discussion board all summer, I didn't join til 8-09 and then was too shy to post much. It was comforting to see I wasn't alone and to see what other's were doing treatment wise. I educated myself regarding the meaning of staging, procedures, reading mammogram reports, what a malignant tumor would look like on the ultra sound (I knew the day the ultra-sound was done, I saw it) all on-line thru Google. I really like the Mayo-Clinic sites the best.
While we all give our opinions and histories, we still can't compare ourselves to each other due to everyone being different, different health issues etc. But we can compare how we are treated by the medical communmity. But here again, I may not be offended by something that sends someone else up the wall, so that's a difference of opinion as well. But when someone here on the board is questioning whether or not they should have chemo etc. I will give my honest opinion and in plain language.
Oh, I didn't have the Braca test, I have no daughters and my son has no children and is never going to hve any and I was and still am comfortable with my decision.
The waiting is the hardest part...we see the TV shows and they get everything "done" in an hour and we always hear that we have to do everything ASAP, and I agree with that. And I feel an open, surgical biopsy was the best for me because there was no delay with Pet Scans or MRI's etc. But that's me, not necessarily someone else.
Just My Opinion, Judy :-)
I have almost exactly the same biopsy results as you except mine was just Stage 2, not 2a. I got a lumpectomy and have wondered since if I will have to worry for the rest of my life. Why did you go for the mastectomy? Can you still get breast cancer if you have mastectomy?
After chemo and rad, then is that type IDC forever disappeared from my body? Ihave not had MRI or PET.
It seems that the more I learn, the more I realize how much more I must learn - and scares me to think I may have gone too conservatively.0 -
The way my wife's surgeonMichPro said:Lump vs Mast Skeezie
I have almost exactly the same biopsy results as you except mine was just Stage 2, not 2a. I got a lumpectomy and have wondered since if I will have to worry for the rest of my life. Why did you go for the mastectomy? Can you still get breast cancer if you have mastectomy?
After chemo and rad, then is that type IDC forever disappeared from my body? Ihave not had MRI or PET.
It seems that the more I learn, the more I realize how much more I must learn - and scares me to think I may have gone too conservatively.
The way my wife's surgeon explained it, the survival rate is the same, but the reoccurance rate goes up with the lumpectomy. She decided for the lump and not the mast because she was stage one and we thought ER+ at the time. If she had to make the decision again being triple-, it might have gone the other way.0 -
John_ 32MichPro said:Lump vs Mast Skeezie
I have almost exactly the same biopsy results as you except mine was just Stage 2, not 2a. I got a lumpectomy and have wondered since if I will have to worry for the rest of my life. Why did you go for the mastectomy? Can you still get breast cancer if you have mastectomy?
After chemo and rad, then is that type IDC forever disappeared from my body? Ihave not had MRI or PET.
It seems that the more I learn, the more I realize how much more I must learn - and scares me to think I may have gone too conservatively.
Cindy Ann Take a Deep Breath
John's comments are coming from a caregiver's point of view, he has watched his wife's life be stolen away from her. He only wants to help all the rest of us take action, that is all.
I wish you wouldn't feel defensive, you are taking the time to educate yourself so you can make the best chouce for you! There is nothing wrong in you doing that. Unless you have a fast growing cancer such as Inflammatory than you do have the time to gather up all the information you need. This decision is the one you will live with so it has tio be yours and you need peace in your head.
It's tough, no doubt about it but we are here to offer a shoulder to cry on, we are here to help ease the pain.
I'm sorry if you have been made to feel somewhat hurt or scared or angry, that was not John's intent. I read his last few sentences over and over, it bears repeating.
if anything I have written has scared, in some way, I hope that it has, so that you take this as the very serious threat to your life that it is. There is really nothing wrong with fear. It is a great motivator. Someone said that courage is not the absence of fear, but rather the strength to take action in the face of it.
Take care everyone, Love Ronda0 -
JudySkeezie said:That is why I insist on an open, surgical biopsy.
That way the lump is removed plus tissue surrounding the area. If the margins are clean you have alredy had the lumpectomy. One of my margins was not completly as clear as my surgeon liked so I had a re-exisonal, wide biopsy and Sentinel Node Biopsy. Nodes clear, one margin not so clear. Chose a single, simple mastecomy. The first biopsy was done with IV Sedation the second one with general anesthesia. With the first biopsy, they had my type (triple neg), stage, 2A and Grade 3. From my finding the lump on 6-4-09 the mastecomy was 9-11-09.
I do not like the other kind of biopsies (my preference) because of all the issues I read here. I want it out and dx immediately.
We are all scared stupid when we first find the lump. But if we are so terrified we can't think, then we need to inquire about getting some anti-aniexty medication to help with sleep and getting a handle on our emotions during the daytime. It was a lifesaver for me. While I looked at this discussion board all summer, I didn't join til 8-09 and then was too shy to post much. It was comforting to see I wasn't alone and to see what other's were doing treatment wise. I educated myself regarding the meaning of staging, procedures, reading mammogram reports, what a malignant tumor would look like on the ultra sound (I knew the day the ultra-sound was done, I saw it) all on-line thru Google. I really like the Mayo-Clinic sites the best.
While we all give our opinions and histories, we still can't compare ourselves to each other due to everyone being different, different health issues etc. But we can compare how we are treated by the medical communmity. But here again, I may not be offended by something that sends someone else up the wall, so that's a difference of opinion as well. But when someone here on the board is questioning whether or not they should have chemo etc. I will give my honest opinion and in plain language.
Oh, I didn't have the Braca test, I have no daughters and my son has no children and is never going to hve any and I was and still am comfortable with my decision.
The waiting is the hardest part...we see the TV shows and they get everything "done" in an hour and we always hear that we have to do everything ASAP, and I agree with that. And I feel an open, surgical biopsy was the best for me because there was no delay with Pet Scans or MRI's etc. But that's me, not necessarily someone else.
Just My Opinion, Judy :-)
Thank you very much for your opinion. I am glad that we are having this discussion and hope many member will benefit from it.
I am glad that you brought up an idea of anti-aniexty medications, I am sure it would help many of us.
As for biopsy, mine was very similar to yours, I decided to have surgical biopsy which was a lumpectomy. I had a lumpectomy two days after I saw my breast surgeon. While my mammogram showed 1.2x1.6 mass, in order to get clear margins my surgeon took 4.0x4.0. Unfortunately, we did not get clear margins, so three weeks later I had a radical modified mastectomy. Pathology report showed skin invasion, and two days later I had another surgery - breast skin re-exision.
From my experience I believe that pathology of a removed tumor is the only comprehensive evaluation method.
Hugs0 -
Wow, where to begin...Hubby said:The way my wife's surgeon
The way my wife's surgeon explained it, the survival rate is the same, but the reoccurance rate goes up with the lumpectomy. She decided for the lump and not the mast because she was stage one and we thought ER+ at the time. If she had to make the decision again being triple-, it might have gone the other way.
First, I had the mastectomy after my re-exision biopsy and Sentinel Node Biopsy. Nodes clear, but one margin still not as clear as the surgeon wanted. It was also seen that I had a few DCIS tiny cells. I told the surgeon I wanted a mastecomy because they could be all thru my breast. I had a single, simple mastecomy and athe biopsy of that tissue was no cancer cells found! WhooHoo! By the way, nodes were clear and I have triple neg.
I have never heard the recurrence rate is higher for a lumpectomy, in most situations with a lumpectomy with CLEAR margins the commom practice has shown it doesn't make any difference if it's lumpectomy or mastectomy. I think it boils down to what is going to make you more comfortable.
The purpose of chemo is to kill any cancer cells that be remaining in the body. We always hope it's going to work 100%. I didn't have to have rads because there were no cancer cells found in the breast tissue.
All of us on this board are ready to answer questions and give personal experiences. Under no circumstances should anyone take these answers above their medical team. But it may give a person a reason to ask further questions or seek a second opinion. When a person asks for advice, they will usally get it and they may or may not like the answer. We all have our own thoughts and experiences and give our answers a lot of thought and are from the heart. They have their own crosses to bear and also have feelings. We are also different personalities and have different tolerance levels. Everyone's feelings can be hurt. I think everyone can take a page from John's book, he and his wife are going thru Hell at this time and looking back they are the ones saying "If only..." And I know exqactly where he is coming from, if he can save someone from he and his wife's situation he is going to try his best. I so appreciate his responses. I pray for them that they can get thru this journey with a good outcome. It's not only newbies who have fears. I don't want info sugar coated for me...I want to hear the real truth.
I hope we can all continue speaking the truth because if we can't than this board will no longer be able to do the wonderful work it does for all of us.
Hugs, Judy :-)0 -
John 32John_32 said:Do Not Wait
As the husband of someone whose breast cancer has recently metastasized to her brain, I find Cindy Ann's comments, though understandable, also somewhat alarming. You say that your cancer is "confined to a small area" and the basis for this assertion is apparently a mammogram. My wife also recently had a mammogram-a follow up to DCIS that was treated with lumpectomy and radiation last year-which did not reveal the presence of any cancer. She was very happy after getting this result ... until she began having seizures in the following weeks. The mammogram had failed to reveal that the cancer had already spread outside of her breast to her brain. I know you say that you need time to collect lots of information to inform your decisions about treatment, but, after seeing my wife go through this same process, and seeing her frequently delay important treatment decisions, I really think the only "information" that you really need is information that you already know: that there is cancer in your body and that it can spread throughout your body if you do not begin to fight it aggressively. If you have a heart condition, or other ailments, then naturally you will want to consult with your doctors to find out if these conditions will be exacerbated by your cancer treatments. But at the end of the day, you will still have to go forward with your treatments if you want to increase your likelihood of survival. So if the treatments are inevitable, better to have them while the cancer is in its infancy than after it has already metastasized beyond the breast. And if anything I have written has scared, in some way, I hope that it has, so that you take this as the very serious threat to your life that it is. There is really nothing wrong with fear. It is a great motivator. Someone said that courage is not the absence of fear, but rather the strength to take action in the face of it.
Thank you for sharing your story and your strong opinion. I really appreciate that you took time despite your wife's serious conditions.I am very sorry that cancer has metastasized to the brain. I personally know several people who was treated for similar condition and have been in remission for 4 to 6 years. I wish your wife's treatments will be successful and she will feel better soon. Please keep posted.
New Flower0 -
Beyond Sugar CoatingSkeezie said:Wow, where to begin...
First, I had the mastectomy after my re-exision biopsy and Sentinel Node Biopsy. Nodes clear, but one margin still not as clear as the surgeon wanted. It was also seen that I had a few DCIS tiny cells. I told the surgeon I wanted a mastecomy because they could be all thru my breast. I had a single, simple mastecomy and athe biopsy of that tissue was no cancer cells found! WhooHoo! By the way, nodes were clear and I have triple neg.
I have never heard the recurrence rate is higher for a lumpectomy, in most situations with a lumpectomy with CLEAR margins the commom practice has shown it doesn't make any difference if it's lumpectomy or mastectomy. I think it boils down to what is going to make you more comfortable.
The purpose of chemo is to kill any cancer cells that be remaining in the body. We always hope it's going to work 100%. I didn't have to have rads because there were no cancer cells found in the breast tissue.
All of us on this board are ready to answer questions and give personal experiences. Under no circumstances should anyone take these answers above their medical team. But it may give a person a reason to ask further questions or seek a second opinion. When a person asks for advice, they will usally get it and they may or may not like the answer. We all have our own thoughts and experiences and give our answers a lot of thought and are from the heart. They have their own crosses to bear and also have feelings. We are also different personalities and have different tolerance levels. Everyone's feelings can be hurt. I think everyone can take a page from John's book, he and his wife are going thru Hell at this time and looking back they are the ones saying "If only..." And I know exqactly where he is coming from, if he can save someone from he and his wife's situation he is going to try his best. I so appreciate his responses. I pray for them that they can get thru this journey with a good outcome. It's not only newbies who have fears. I don't want info sugar coated for me...I want to hear the real truth.
I hope we can all continue speaking the truth because if we can't than this board will no longer be able to do the wonderful work it does for all of us.
Hugs, Judy :-)
This is my truth.I do not believe scaring the Hell out of anyone is a good ideal. They are getting that enough from all the information being thrown at them. I feel this site is a place to ask questions, vent, but most of all a safe haven. A place to be calmed, have a laugh, and occassionaly have a good cry. I do feel for John and what he is going through. But he was harsh peroid. Any normal person would be scared. No anxiety drugs on earth will take away that kind of fear he inspired. I am afraid some of these posts will have the opposite effect and make new people not come back and older ones leave. It seems most of you do not get this. NO ONE WANTS TO HEAR FROM A NON PROFESSIONAL THE WORST THAT CAN HAPPEN WHEN NOT ONE OF US IS THE SAME!Why scare someone because you are scared. Better to sugar coat and leave that job to the professionals. Peroid.. If you have read any of my posts they are not giving anyone advice about treament. They are except for 3 of them for the most part mean't to comfort and care for someone I don't know.I am a professional and would never ever tell some horror story like John did.He didn't tell anyone how many times his wife had mammograms or if she even went regularly. How long she had DCIS. Just had a lumpectomy then a few weeks later seizures.What type of ca they found all through her breast? Her brain tumor could have nothing to do with BC. He never said how it related to BC.Do you all see what I mean. Yes, I know it can go to the brain. I realize he is suffering and in his over zealousness wanted to help. But he may have done damage to other people not answering but reading his post. He has to temper his words with wisdom not fear. I did react to New Flower and kick it up with my doctors. I am doing the right thing. Oh by the way I see a Neurologist next week. That was scheduled 1 mth ago. He is the best in my state. My surgeon sends everyone to him for check up and possible MRI.She always wants to err on the side of caution with all new cancer patients..So I am being watched very carefully. I let fear only guide me for a brief time and got what I needed then let it go.Some people are unable to let it go.. I am fighting for them.I do not want someone to get on this site and read a post like I did and do something rushed out of fear. I am not angry. Just responded to a post and again got a scare tactic. By the way the real truth comes from God and your doctors/testing.You have to have faith in what your doing and in God. People on this site can only speak for themsleves. This post has gone terribly wrong. I have taken a deep breath and am writing what I really mean. Stop scaring people.. It is wrong.. So a little sugar never hurt anyone..It is no one on this sites responsiblilty to force their own views on others. Rememeber we are all different and react to cancer in different ways. You have to all ask yourselves this would you of wanted to read a post like John's when you were first diagnosed full of fear without a lot of facts. Or read about all the survivors and how you too can get through this.. I am not going to apologize for speaking my truth. I am going to pray for John and his wife. I hope she makes it through this and he gets some help dealing with this horrible time. But I will not back down from what I believe..If I don't like what is being said especially if I think it will scare people I am going to speak up.Everyone has a right to their own opinions and to voice them but come on is it right to scare people?????0 -
There are no professionals on this board, justCindy Ann said:Beyond Sugar Coating
This is my truth.I do not believe scaring the Hell out of anyone is a good ideal. They are getting that enough from all the information being thrown at them. I feel this site is a place to ask questions, vent, but most of all a safe haven. A place to be calmed, have a laugh, and occassionaly have a good cry. I do feel for John and what he is going through. But he was harsh peroid. Any normal person would be scared. No anxiety drugs on earth will take away that kind of fear he inspired. I am afraid some of these posts will have the opposite effect and make new people not come back and older ones leave. It seems most of you do not get this. NO ONE WANTS TO HEAR FROM A NON PROFESSIONAL THE WORST THAT CAN HAPPEN WHEN NOT ONE OF US IS THE SAME!Why scare someone because you are scared. Better to sugar coat and leave that job to the professionals. Peroid.. If you have read any of my posts they are not giving anyone advice about treament. They are except for 3 of them for the most part mean't to comfort and care for someone I don't know.I am a professional and would never ever tell some horror story like John did.He didn't tell anyone how many times his wife had mammograms or if she even went regularly. How long she had DCIS. Just had a lumpectomy then a few weeks later seizures.What type of ca they found all through her breast? Her brain tumor could have nothing to do with BC. He never said how it related to BC.Do you all see what I mean. Yes, I know it can go to the brain. I realize he is suffering and in his over zealousness wanted to help. But he may have done damage to other people not answering but reading his post. He has to temper his words with wisdom not fear. I did react to New Flower and kick it up with my doctors. I am doing the right thing. Oh by the way I see a Neurologist next week. That was scheduled 1 mth ago. He is the best in my state. My surgeon sends everyone to him for check up and possible MRI.She always wants to err on the side of caution with all new cancer patients..So I am being watched very carefully. I let fear only guide me for a brief time and got what I needed then let it go.Some people are unable to let it go.. I am fighting for them.I do not want someone to get on this site and read a post like I did and do something rushed out of fear. I am not angry. Just responded to a post and again got a scare tactic. By the way the real truth comes from God and your doctors/testing.You have to have faith in what your doing and in God. People on this site can only speak for themsleves. This post has gone terribly wrong. I have taken a deep breath and am writing what I really mean. Stop scaring people.. It is wrong.. So a little sugar never hurt anyone..It is no one on this sites responsiblilty to force their own views on others. Rememeber we are all different and react to cancer in different ways. You have to all ask yourselves this would you of wanted to read a post like John's when you were first diagnosed full of fear without a lot of facts. Or read about all the survivors and how you too can get through this.. I am not going to apologize for speaking my truth. I am going to pray for John and his wife. I hope she makes it through this and he gets some help dealing with this horrible time. But I will not back down from what I believe..If I don't like what is being said especially if I think it will scare people I am going to speak up.Everyone has a right to their own opinions and to voice them but come on is it right to scare people?????
survivors and family members of survivors. I consider a professional an oncologly nurse or doctor/surgeon, someone who is working directly in the field. John was giving the facts of his experience, he has told his whole story in earlier posts. It is not a new story..we all know the importance of being expediant in our dx and treatment. It just seems that sometimes people are so worried about getting every test known to man that they tend to lose site of what's going on. We all read about the ones whose tumors grow to double the original size by time treatment begins. He is greatly concerned with that happening.
I don't feel John said anything horrible except to get on with treatment as soon as possible to work toward a full recovery. I can't imagine tons of people are going to be scared by that. That is not new news, I've heard that my whole life. And if his words sounded a little harsh to someone, take it with a grain of salt and move on. It's one opinion only. Newbie's on this board are scared but I don't think one person's opinion is going to scare them off this board. There are other discussion boards that are much scarier...I think we have honest discussions and should feel free to voice our opions when asked. And everytime someone posts they are asking for an opinion of some sort.
Cindy Ann, John speaks his mind as you do. And as you said earlier you are not going to read his posts anymore.
Again, just my opinion....0 -
BizarreSkeezie said:There are no professionals on this board, just
survivors and family members of survivors. I consider a professional an oncologly nurse or doctor/surgeon, someone who is working directly in the field. John was giving the facts of his experience, he has told his whole story in earlier posts. It is not a new story..we all know the importance of being expediant in our dx and treatment. It just seems that sometimes people are so worried about getting every test known to man that they tend to lose site of what's going on. We all read about the ones whose tumors grow to double the original size by time treatment begins. He is greatly concerned with that happening.
I don't feel John said anything horrible except to get on with treatment as soon as possible to work toward a full recovery. I can't imagine tons of people are going to be scared by that. That is not new news, I've heard that my whole life. And if his words sounded a little harsh to someone, take it with a grain of salt and move on. It's one opinion only. Newbie's on this board are scared but I don't think one person's opinion is going to scare them off this board. There are other discussion boards that are much scarier...I think we have honest discussions and should feel free to voice our opions when asked. And everytime someone posts they are asking for an opinion of some sort.
Cindy Ann, John speaks his mind as you do. And as you said earlier you are not going to read his posts anymore.
Again, just my opinion....
That's really my only reaction to checking back on this thread and perusing over your rambling hostility. Your threshold for being "scared to death" seems rather low insomuch as even the simple advice, in the original post, not to delay treatment elicited this reaction from you. And actually crying because someone wrote that it's best not to delay getting treatment? You're obviously not handling any of this very well, which may be perfectly natural given the circumstances, but spare me the raging diatribes. No one was presuming to tell you what is best in your particular situation-I don't know you and don't particularly care about your specific situation-but I do know that my wife is farther along in this thing than you are and that there lessons I think that we have learned from her experience. And if that information can help even one other person resolve any doubts they have about going forward with treatment without undue delay, then that's a good thing. I am also somewhat offended by how caustic your reaction is to my simply imparting some details about my wife's experience with breast cancer. Certainly it is very sad that her breast cancer has spread to the brain, but she has now completed her radiation and is recovering well-she is certainly not some frightening half-dead corpse in some kind of House of Horrors. There is no reason why she may not continue to do well and that her brain tumors may dissipate. Finally, your admonition that we should restrict ourselves to "sugar-coated" remarks that merely say "do whatever is best for you" seems to me to defeat the purpose of a message board where a wealth of valuable information can be exchanged among patients and caregivers, particularly as it concerns a life-threatening disease about which the "professionals" are still, after billions of dollars and decades of research, very much in the dark.0 -
IJohn_32 said:Bizarre
That's really my only reaction to checking back on this thread and perusing over your rambling hostility. Your threshold for being "scared to death" seems rather low insomuch as even the simple advice, in the original post, not to delay treatment elicited this reaction from you. And actually crying because someone wrote that it's best not to delay getting treatment? You're obviously not handling any of this very well, which may be perfectly natural given the circumstances, but spare me the raging diatribes. No one was presuming to tell you what is best in your particular situation-I don't know you and don't particularly care about your specific situation-but I do know that my wife is farther along in this thing than you are and that there lessons I think that we have learned from her experience. And if that information can help even one other person resolve any doubts they have about going forward with treatment without undue delay, then that's a good thing. I am also somewhat offended by how caustic your reaction is to my simply imparting some details about my wife's experience with breast cancer. Certainly it is very sad that her breast cancer has spread to the brain, but she has now completed her radiation and is recovering well-she is certainly not some frightening half-dead corpse in some kind of House of Horrors. There is no reason why she may not continue to do well and that her brain tumors may dissipate. Finally, your admonition that we should restrict ourselves to "sugar-coated" remarks that merely say "do whatever is best for you" seems to me to defeat the purpose of a message board where a wealth of valuable information can be exchanged among patients and caregivers, particularly as it concerns a life-threatening disease about which the "professionals" are still, after billions of dollars and decades of research, very much in the dark.
have to agree with John and the others that saw and understood what he was saying. I personally, never want anything, and, I mean anything, sugar coated in respect to my condition, treatment or anything. I can't fight what I don't understand or am told about. This site is not just for a laugh, a cry or venting. It is a site where we can tell our own personal stories whether they be good or bad. And, if that scares someone off of the site, then I just don't get it. Breast cancer is scary, cancer is terrifying! I can't imagine reading anything else in the whole world that is scarier than that. Treatments are scary, the diagnosis is scary, the surgery is scary, but, if you arm yourself with all of the information from your team of doctors and from bc patients and survivors, you will go into battle with full armor.
I extend my prayers and heartfelt good wishes to you John and your wife.
Sue
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