Lasing
03-11-2005, 06:18 PM
Every year since 2003, my mother has gotten breast cancer. First was the left breast. She had a lumpectomy, chemo, radiation which concluded in Aug of 2003. In Jan 2004, she was diagnosed with bc in her right breast but this was a different cancer and was a more aggressive nonestrogen cancer. Again, a lumpectomy, chemo, radiation which ended in Aug 2004. Today, Mar of 2005, she has been diagnosed with IBC (inflammatory breast cancer) caused by a recurrence of her last bout. She starts chemo again next Wed and has to go every 2 weeks for ? The doctor said it hasn't spread yet but it will eventually. How do I go on? I have a 3 yr old who loves his MeMe, a pregnant sister and a 7 year old nephew. My mother is one of the most important people in my life. I don't know what to do. How do you go about every day, mundane life when this is hanging over your head? I just needed to get this out. If anyone has any info on IBC such as survival, please let me know.
UPDATED 11/11/05
My mom died on Aug 6 of Metaplastic Breast Carcinoma, it strikes less than .5% of all breast cancer victims. It is rarely seen but it is untreatable, non chemo responsive and travels through the blood. Doctors in other countries (the few cases that are seen are mostly overseas) have attemped everything from your traditional chemo, radiation, drugs... to alternative medical practices. Unfortunately, it is a vile stalker of a cancer that, once it shows up, it has never been successfully been destroyed or put in remission for more than a few months. If interested in more, I posted another msg on 10/13 regarding what we found out about this version of BC
UPDATED 11/11/05
My mom died on Aug 6 of Metaplastic Breast Carcinoma, it strikes less than .5% of all breast cancer victims. It is rarely seen but it is untreatable, non chemo responsive and travels through the blood. Doctors in other countries (the few cases that are seen are mostly overseas) have attemped everything from your traditional chemo, radiation, drugs... to alternative medical practices. Unfortunately, it is a vile stalker of a cancer that, once it shows up, it has never been successfully been destroyed or put in remission for more than a few months. If interested in more, I posted another msg on 10/13 regarding what we found out about this version of BC
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layla=
03-12-2005, 04:18 AM
Stay strong, my nan had the same thing but much later in life, she had them both removed, i was not told much about it, so i have no real advice, I hope you get some proper advice on your situation, I just wanted to send my love.
Kalie
03-19-2005, 11:31 PM
This is how you go on... you just do. I am 28 and currently fighting a recurrence of bc -- I'm stage IV. Be strong, enjoy every moment you have with your mom and your family, but build no expectations. If you have no expectations, you will not be disappointed by them. (This is actually a basic Buddhist teaching that I've been following.) Live for now, smile, laugh, don't think about things like "will she be here for the holidays". Thoughts like that will drive you mad b/c they are counter productive and completely unanswerable. Loss is part of life, and hopefully you and your family won't need to experience it in regard to your mother for a very, very long time. But, the more you think about loss, the more you are ignoring that she is still here. Just love her and let her love you!
Just a quick question, but what kind of doctor predicts that cancer will spread? Or, is it just your feeling that it will? Cancer doesn't spread until it actually does. Again, don't sit around thinking about all that, all those thoughts do are rob you of the joys you have right now.
Best,
Kalie
Just a quick question, but what kind of doctor predicts that cancer will spread? Or, is it just your feeling that it will? Cancer doesn't spread until it actually does. Again, don't sit around thinking about all that, all those thoughts do are rob you of the joys you have right now.
Best,
Kalie
stargrace
03-22-2005, 07:16 PM
my mum had bc, first they told her that it was contained in the lump so they just removed that, then she was tld it had already started spreading so they removed the breast and the lymp nodes, but the cpould remove all of it so she had to have intesive chemo and radio therapy to which she almost died from an spend six weeks in intensive care, now u wouldn't even think that she had almoset died,
no matter how bad things lookthere is always a big chance of survival, esspecially these days, we were told that mum would survive the night let alone3 years later
no matter how bad things lookthere is always a big chance of survival, esspecially these days, we were told that mum would survive the night let alone3 years later
cyburham
04-13-2005, 09:00 PM
My mother was dianosed 20 years ago. She had a masectomy and chemo and radiation. She was told it had spread enough that she only had about a 2% chance of it working. The chemo made her sick and she decided it was not worth it after 4 months because it made her so sick. January will be 20 years. She goes back once a year and is still healthy. Miracles do happen.
Lasing
10-05-2005, 12:52 PM
Thanks to everyone for posting. My mom passed away on Aug 6. We found out in May that she had an extremly rare form of breast cancer called "metaplastic breast carcinoma". While IBC is also considered rare (20% of all diagnosed cancers), metaplastic only appears in .06% of all cases. Most doctors have never heard of it and even fewer have ever seen it. We are fortunate to live in MD where we have Hopkins, GBMC with its renowned breast cancer treatment, outside of DC where you have the NIH and Cancer Institute. I am writing this to let people know where to go for info on these rare cases. When I looked for info, there was nothing. I found that the National Cancer Institute in Washington (while they had never heard of or seen a case) was able to provide pages of explanations from medical books and copies of papers written by doctors in other countries who have tried unsuccessfully to treat it. My mother was even worse than the average metaplastic case because she had an extremely rare sarcinoma metasisis (a skin cancer where the cancer tumors from inside come outside and form bleeding lesions on the skin surface).
Well, thanks again for the support. I hope that this info eventually helps someone else who types "metaplastic" into a search engine.
Well, thanks again for the support. I hope that this info eventually helps someone else who types "metaplastic" into a search engine.
rosequartz
10-05-2005, 12:57 PM
Ooooh Lansing,
I'm so sorry about your moms passing.
She will always live on in your heart.
:angel:
I'm so sorry about your moms passing.
She will always live on in your heart.
:angel:
lizard50
10-06-2005, 12:56 AM
I had a differant breast cancer and you will get feedback from other women. I have to say that the worse thing you can do for your mother is to fall apart. This is about her. I surrounded myself with friends who were encouraging and loving and had a great sense of humor. Love her and be encouraging. You have her today. That is all we have. Also get Susan Love's Breast Book. It is a great book and easy to read and will give you great information. Knowledge is power.Lizard50
zombie51
10-11-2005, 12:02 AM
Hi, you have to be strong and supportive. Some people want to talk about their sickness some don't. Make sure that you know what your mom wants and respect that and protect her from nosy people if she does not wants to talk about. Be with your mom as much as possible.
I have question, how on earth doctor knows that it will spread. It will but in a year or 20 that makes a diffrence.
I had lumpectomy in 2001 and mastectomy followed by removing ovaries in 2004. Second time around I had inflamatory breast cancer. You really scared me now. I am hopping for few more years till my younger son will be 18.
I have also some problems with the second breast. I am on arimidex and I fell side effects realy bad. I started to think about second mastectomy before it will get there. You really made me think now. Please anybody can help us and tell us both about that "spreading". It will help me, because I have nobody to take care of me so I have to plan everything a head.
Will second mastectomy put me one step a head.
On the other hand I was pushing my dr for answers and she never mention that.
Good luck and take care
Barb
I have question, how on earth doctor knows that it will spread. It will but in a year or 20 that makes a diffrence.
I had lumpectomy in 2001 and mastectomy followed by removing ovaries in 2004. Second time around I had inflamatory breast cancer. You really scared me now. I am hopping for few more years till my younger son will be 18.
I have also some problems with the second breast. I am on arimidex and I fell side effects realy bad. I started to think about second mastectomy before it will get there. You really made me think now. Please anybody can help us and tell us both about that "spreading". It will help me, because I have nobody to take care of me so I have to plan everything a head.
Will second mastectomy put me one step a head.
On the other hand I was pushing my dr for answers and she never mention that.
Good luck and take care
Barb
Lasing
10-11-2005, 09:03 AM
I didn't want to scare anyone, sorry. My mom's cancer, the little that they knew about the metaplastic, was that it is highly aggressive. It is not estrogen positive so there are no drugs, all chemo treatments that have been tried around the world have failed (the doctors do every chemo that they can just on the chance it will work, but up until now there has not been a single case of the metaplastic breast cancer responding). It is almost always lymphnode negative, but, again, the cases that they have to study show that it quickly reappears in the brain or in the lungs; unlike most bc this one travels via blood vessels, so wherever they go the cancer can set up shop. We could not understand why the doctor was so against a masectomy. I later found out through research (I am lucky my father in law is a doctor and interprets the case studies and medical journels for me) that almost all cases of metaplastic breast cancer come back as lung cancer within a few months. Apparantly, the cells of this cancer are not deterred by the lack of breast; they attach to the chest wall where the breast wall is and have easy access to the lung.
We were lucky in that the doctors here, many are pioneers in the field of breast cancer. Dr. Lauren Schnapper (my mom's doctor) was the first who believed that masectomies were not always the answer. She has been written up in medical books, journels... extensively. The team she has assembled for the chemo and radiology is also highly thought of in the field. Again, I am lucky. My FIL and her father practiced at the same hospital and she did some of her residency under my FIL (cardiac rotation). He was able to get my mom into see her. This also explains why I was able to get a lot of info. Towards the end, we just wanted the truth. We knew it would be ugly but we HAD to know. My mom did not want to know anything so the doctor's honored her wishes and did not tell her much; she did authorize them to speak to me and my sister and, like I said, we wanted them to be brutally honest. It was a good thing because towards the end when she didn't think she was that bad, we knew and were able to spend extra time with her and to take our sons to see her more often then normal. It also helped my father prepare himself.
Hope I didn't scare people. As I stated before this cancer is SO RARE that there are so few cases most people will never here about it let alone get it. This info is for the one person in a million who does get it and needs info.
Lisa
We were lucky in that the doctors here, many are pioneers in the field of breast cancer. Dr. Lauren Schnapper (my mom's doctor) was the first who believed that masectomies were not always the answer. She has been written up in medical books, journels... extensively. The team she has assembled for the chemo and radiology is also highly thought of in the field. Again, I am lucky. My FIL and her father practiced at the same hospital and she did some of her residency under my FIL (cardiac rotation). He was able to get my mom into see her. This also explains why I was able to get a lot of info. Towards the end, we just wanted the truth. We knew it would be ugly but we HAD to know. My mom did not want to know anything so the doctor's honored her wishes and did not tell her much; she did authorize them to speak to me and my sister and, like I said, we wanted them to be brutally honest. It was a good thing because towards the end when she didn't think she was that bad, we knew and were able to spend extra time with her and to take our sons to see her more often then normal. It also helped my father prepare himself.
Hope I didn't scare people. As I stated before this cancer is SO RARE that there are so few cases most people will never here about it let alone get it. This info is for the one person in a million who does get it and needs info.
Lisa
d_Random
11-09-2005, 05:03 PM
None of us are promised tomorrow. Life is a gift and there are unfortunately no guarantees.
I am in a similar situation with my mom. The best thing you can do (from my experience) is be there for her. Be available for her and be part of her support system. Another thing, and this might sound dishonest, is try to hide your grief from her. You don't want to her to worry about you. If you tell her, "I can't go on living without you", she will worry about you and suffer more. Be strong for her and tell her you love her everytime you speak with her.
I am in a similar situation with my mom. The best thing you can do (from my experience) is be there for her. Be available for her and be part of her support system. Another thing, and this might sound dishonest, is try to hide your grief from her. You don't want to her to worry about you. If you tell her, "I can't go on living without you", she will worry about you and suffer more. Be strong for her and tell her you love her everytime you speak with her.
d_Random
11-09-2005, 05:17 PM
Kalie that is just AWESOME advice. I am reading a few Buddhist books and they have been a huge help in REALLY accepting life. Right now I am reading "When things fall apart" by Pema Chodron. It has been enlighening.
This is how you go on... you just do. I am 28 and currently fighting a recurrence of bc -- I'm stage IV. Be strong, enjoy every moment you have with your mom and your family, but build no expectations. If you have no expectations, you will not be disappointed by them. (This is actually a basic Buddhist teaching that I've been following.) Live for now, smile, laugh, don't think about things like "will she be here for the holidays". Thoughts like that will drive you mad b/c they are counter productive and completely unanswerable. Loss is part of life, and hopefully you and your family won't need to experience it in regard to your mother for a very, very long time. But, the more you think about loss, the more you are ignoring that she is still here. Just love her and let her love you!
Just a quick question, but what kind of doctor predicts that cancer will spread? Or, is it just your feeling that it will? Cancer doesn't spread until it actually does. Again, don't sit around thinking about all that, all those thoughts do are rob you of the joys you have right now.
Best,
Kalie
This is how you go on... you just do. I am 28 and currently fighting a recurrence of bc -- I'm stage IV. Be strong, enjoy every moment you have with your mom and your family, but build no expectations. If you have no expectations, you will not be disappointed by them. (This is actually a basic Buddhist teaching that I've been following.) Live for now, smile, laugh, don't think about things like "will she be here for the holidays". Thoughts like that will drive you mad b/c they are counter productive and completely unanswerable. Loss is part of life, and hopefully you and your family won't need to experience it in regard to your mother for a very, very long time. But, the more you think about loss, the more you are ignoring that she is still here. Just love her and let her love you!
Just a quick question, but what kind of doctor predicts that cancer will spread? Or, is it just your feeling that it will? Cancer doesn't spread until it actually does. Again, don't sit around thinking about all that, all those thoughts do are rob you of the joys you have right now.
Best,
Kalie
gloriaamerican
11-10-2005, 05:39 PM
HI I just want to say that if your mom has Inflamatory breast cancer does mean it is the end for her. I had inflam. breast cancer when I was 31 years was good for 10 years had breast reconstruction had breast cancer in the left side inflamatory breast cancer had reconstruction surgery 2 years ago I was 42 chemo, radiation first time and second time. My reconstruction surgery was different this time expander put in and have to have a fat graff but my CA 27 29 is elevated was 60 120 mor at 130 could be a false positive but tell your mom this is not the end she still can have a full recover I don't know why the doctor did tell her that news. It did spread so she has a chance. Good luck to you and you mom. How old is you mom. Take care Gloria
SusanGene
11-11-2005, 01:41 PM
I am so, so sorry about your mom. It sounds like traditional therapy has not worked for her and it may be time to try something else; something few know about.
Tumor growth in mice was reduced or stopped by injecting a water solution of chlorella around the growth. Even tumor re-growth was cut down significantly. In another study by the same researchers, tumor cells were killed completely by the chlorella injection. The researchers then began to give chlorella in ORAL form, and the antitumor effect was still significant.
I believe you should buy a big bottle of chlorella and start her on 2 a day then increase until she's taking 12 a day. I take spirulina which is very similar to it and I will buy chlorella soon. I also recommend 3 coral calciums because **cancer cannot exist in an alkaline environment!** It needs an ACID environment and coral calcium changes a person's PH to alkaline.
I hope you decide to research what I've said and that you come to the belief that what I've told you is truth. All shown in experiments over the world for decades. NO doctor will recommend what I"ve said but it would be irresponsible for them to reject it completely. Please; just try it for your and your mom's sake. God bless you both.
Tumor growth in mice was reduced or stopped by injecting a water solution of chlorella around the growth. Even tumor re-growth was cut down significantly. In another study by the same researchers, tumor cells were killed completely by the chlorella injection. The researchers then began to give chlorella in ORAL form, and the antitumor effect was still significant.
I believe you should buy a big bottle of chlorella and start her on 2 a day then increase until she's taking 12 a day. I take spirulina which is very similar to it and I will buy chlorella soon. I also recommend 3 coral calciums because **cancer cannot exist in an alkaline environment!** It needs an ACID environment and coral calcium changes a person's PH to alkaline.
I hope you decide to research what I've said and that you come to the belief that what I've told you is truth. All shown in experiments over the world for decades. NO doctor will recommend what I"ve said but it would be irresponsible for them to reject it completely. Please; just try it for your and your mom's sake. God bless you both.