Aa
Where are we now
My mother (75 & otherwise healthy) was diagnosed with Infiltrating Lobular Carcinoma in April this year. She underwent a Modified Radical Mastectomy in May and the Path report from that states Stage 3B, TS, N2, MX. She magaed the first 4 Chemo treatments w/o major issues,and has completed 1/4 of another type of Chemo... she has been hospitalized ever since. (1 week today)
White blood count low, red blood count low, talk of Ogilve Syndrome? She wants to come home and at this point I want her to have whatever she wants but do not want to make matters worse or harm her inadvertently.
I am exsausted and need someone to be STRAIGHT FORWARD with me ... I need to know what we are facing here. If she does not take any more Chemo what will happen? Please help me help her.
White blood count low, red blood count low, talk of Ogilve Syndrome? She wants to come home and at this point I want her to have whatever she wants but do not want to make matters worse or harm her inadvertently.
I am exsausted and need someone to be STRAIGHT FORWARD with me ... I need to know what we are facing here. If she does not take any more Chemo what will happen? Please help me help her.
I may not have personally walked in cancer shoes, but I have walked in others just as uncomfortable. I did not allow fear to enter into the picture and cloud my judgment. I needed a clear head to make the proper decision - the proper decision for me - not for you - or for anyone else.
You have not walked in my shoes. You have not had cancer. You have not had treatment. You have no idea because you have not lived it.
Where did I say my Mother had advanced cancer? What are you talking about? More of your misinformation.
You have spouted off all you wanted to but again you have no studies to prove your theories. I won't respond to the likes of you on this post as it's not yours or mine to have this idiotic discussion. If you don't want chemo please, by all means don't have it should you get cancer.
Sadyjade, I apologize for being a part of her tacky discussion on your thread and won't reply to her again.
Where did I say my Mother had advanced cancer? What are you talking about? More of your misinformation.
You have spouted off all you wanted to but again you have no studies to prove your theories. I won't respond to the likes of you on this post as it's not yours or mine to have this idiotic discussion. If you don't want chemo please, by all means don't have it should you get cancer.
Sadyjade, I apologize for being a part of her tacky discussion on your thread and won't reply to her again.
Everyone has walked in your shoes. No one is a stranger to cancer. It occurs in every family. My husband's niece has breast cancer, as does my brother's adopted daughter. My sister had liver cancer.
Your mother's cancer was advanced. For her, long-term survival rates were low, no matter what she did, or didn't do, to treat it. My previous post said that the survival odds for chemo or no chemo are about the same. I never said alternative medicine was a cure. Since there is no difference in survival, were I afflicted, I would avoid the horror of chemotherapy
Your mother's cancer was advanced. For her, long-term survival rates were low, no matter what she did, or didn't do, to treat it. My previous post said that the survival odds for chemo or no chemo are about the same. I never said alternative medicine was a cure. Since there is no difference in survival, were I afflicted, I would avoid the horror of chemotherapy
It worries me that she is going to the oncologist to make vital treatment decisions without full benefit of her normal meds as most of them take time to build up in the system for full effect.
Did her oncologist pay a visit while she was in hospital? I think he/she needs to chime in on the "chemo did it" scenario as I don't believe that Ogilve syndrome is usually associated with chemo. That syndrome can be a real serious condition if it's found that she has it.
Constipation and/or diarreah can come be caused by chemo drugs. Constipation is a major complaint of people who take pain meds.
Most important while taking chemo is that after the infusion she drinks a LOT of water to try and move it out of her system as quickly as possible. That's not so easy to do when after a few cycles you can't even stand to drink any water or much else for that matter.
I hope your sister decides to go to that doctor appt too so you can ask all the questions you want and give your input at the same time. I'd also make sure that your Mother lets them know that you have her permission to ask questions and receive answers. That's usually something that needs to be signed by Mother.
Pssst.. that BRCA test should really be done first on someone in the family with cancer. Once the mutation, if any, is identified it's super quick and lots cheaper for you and your sister & other family members to have done. This would also be any cousins on the "cancer" side of the family.
You certainly do have your hands full but I'm praying for you and your Mother.
Did her oncologist pay a visit while she was in hospital? I think he/she needs to chime in on the "chemo did it" scenario as I don't believe that Ogilve syndrome is usually associated with chemo. That syndrome can be a real serious condition if it's found that she has it.
Constipation and/or diarreah can come be caused by chemo drugs. Constipation is a major complaint of people who take pain meds.
Most important while taking chemo is that after the infusion she drinks a LOT of water to try and move it out of her system as quickly as possible. That's not so easy to do when after a few cycles you can't even stand to drink any water or much else for that matter.
I hope your sister decides to go to that doctor appt too so you can ask all the questions you want and give your input at the same time. I'd also make sure that your Mother lets them know that you have her permission to ask questions and receive answers. That's usually something that needs to be signed by Mother.
Pssst.. that BRCA test should really be done first on someone in the family with cancer. Once the mutation, if any, is identified it's super quick and lots cheaper for you and your sister & other family members to have done. This would also be any cousins on the "cancer" side of the family.
You certainly do have your hands full but I'm praying for you and your Mother.
Sue, My sister is my mothers POA and has been trying to stay on top of things, but feeling overwhelmed, so I am trying to do more. Her doctors have all asked for her kids to have this test .. shamed to admit, I have not done so as yet. To be honest, I am too focused on her care right now. Every single time she has had any type of surgery, they want to and sometimes do withold some of her meds. They tell us it is because of anesthesia that this must be done ... we have one more of these battles in recent weeks, though. This last hospital stay was due to an intestinal blockage and she was on an NG tube and all sorts of goodies in bag form. When they first refused her some of her meds, I told them to give her morphine then .. we had to argue for that every dam'd night! They did not disrupt her haldol and some others except to say until they got her swelling down and off the feeding tube, she was getting what could come in liquid form. They are of the mind that this was due to chemo and all the phsycotropics she takes. They are also tossing around something called "Ogilve Syndrome" (sp) a psuedo blockage scenrio.
I am so sorry for your loss to cancer. Again that is something we all share.
A couple of things I'd like to bring to your attention. Do you think you could get her Dr to do a BRCA test on your Mother? It's a simple blood test that can be sent to Myriad Labs to see if there is a genetic mutation raising the risk of members of your family to cancer. My insurance company paid for it for me. You can always call her insurance company or Medicare, whatever the case may be and fight for this. And this is not just breast cancer. It's also ovarian, pancreatic, colon, prostate in men, melanoma and certain brain cancers that I can't pronounce nor spell correctly. If your Mother tested positive for a mutation then you could have the test done as well to see what your risk may be for this at a much lower cost. I tested negative and so did my sister though we both battled cancer at the same time. I lost both Grandmothers and my Mother to cancer. Though we do not have the mutation we do have a high family risk.
Do you have a power of attorney for your Mother for medical treatment? You may want to talk to her about that to make sure she gets her meds. I don't understand why they would withhold meds for bipolar when she's going to go manic followed by depression etc. That's no way for anyone to live and really, she needs that medication to deal with the fear that comes with a cancer diagnosis and subsequent treatment.
This is a good time to mention that she really needs a health advocate to make sure that she gets what she needs and wants. I think that person is already you. It's not going to be easy by any means but no one should go into any type of medical "situation" without someone they trust to have their back.
We're here for you and will help in any way we can. Best wishes.
A couple of things I'd like to bring to your attention. Do you think you could get her Dr to do a BRCA test on your Mother? It's a simple blood test that can be sent to Myriad Labs to see if there is a genetic mutation raising the risk of members of your family to cancer. My insurance company paid for it for me. You can always call her insurance company or Medicare, whatever the case may be and fight for this. And this is not just breast cancer. It's also ovarian, pancreatic, colon, prostate in men, melanoma and certain brain cancers that I can't pronounce nor spell correctly. If your Mother tested positive for a mutation then you could have the test done as well to see what your risk may be for this at a much lower cost. I tested negative and so did my sister though we both battled cancer at the same time. I lost both Grandmothers and my Mother to cancer. Though we do not have the mutation we do have a high family risk.
Do you have a power of attorney for your Mother for medical treatment? You may want to talk to her about that to make sure she gets her meds. I don't understand why they would withhold meds for bipolar when she's going to go manic followed by depression etc. That's no way for anyone to live and really, she needs that medication to deal with the fear that comes with a cancer diagnosis and subsequent treatment.
This is a good time to mention that she really needs a health advocate to make sure that she gets what she needs and wants. I think that person is already you. It's not going to be easy by any means but no one should go into any type of medical "situation" without someone they trust to have their back.
We're here for you and will help in any way we can. Best wishes.
The abuse of the C-section started long before the abuse of malpractice litigants. It was already becoming prevalent in the 1950's. The fear of malpractice suits is merely an excuse. C-sections are much more risky than natural birth. For subsequent births there is additional risk. Then there are adhesions, etc. I should think there is more material there for malpractice suits than there are for vaginal births.
Soooo glad to hear your mom is well enough to leave the hosp., and that you are going to be able to talk with her oncologist!
You are doing fine in using the forum, and we appreciate that you have added your follow-up post to your original thread. When people do that it is very helpful, because you don't have to repeat the details of your situation each time, and because all the info is here in one place which helps us to provide better answers.
Although a lot of the members of this community are BC survivors, others are here, like you, on behalf of and out of concern for loved ones dealing with BC. Believe me, we understand how difficult it is to be in either role, esp. when the loved one is at a distance or presents unique challenges, as in the case of your mom.
So feel free to share any of your questions, feelings, and difficulties you are having to cope with.
And my condolences on the recent loss of your sister.
Warm regards,
bluebutterfly
You are doing fine in using the forum, and we appreciate that you have added your follow-up post to your original thread. When people do that it is very helpful, because you don't have to repeat the details of your situation each time, and because all the info is here in one place which helps us to provide better answers.
Although a lot of the members of this community are BC survivors, others are here, like you, on behalf of and out of concern for loved ones dealing with BC. Believe me, we understand how difficult it is to be in either role, esp. when the loved one is at a distance or presents unique challenges, as in the case of your mom.
So feel free to share any of your questions, feelings, and difficulties you are having to cope with.
And my condolences on the recent loss of your sister.
Warm regards,
bluebutterfly
Thank you all for responding .. not quite sure how this forum works just yet, so bare with me. I first need to say that I have read, and reread all the comments and am taking something away with every one of them. I will be seeing her oncologist first thing Monday morning to discuss all of these issues.
I also have to tell you that since posting my first question here, they have released my Mother from the hospital and have told her she is strong enough for her next chemo appt (wed). They still want her to schedule a Colonoscopy (sp) in 2 weeks. She is putting all her trust in her Doctors and will do what they suggest for as long as she feels she can. My mother is Biploar, which makes things more difficult because sometimes they withold her meds and that creates a lot of undue stress for her *sigh*
I have watched a grandmother, 2 aunts, a sister, as well as many friends and other relatives go through Cancer and various treatments. This October will mark the 1 year of the loss of a sister who had battled pancreatic cancer for 18 months before succoming to the disease ... nothing, and I do mean nothing has compared to the journey I am on now, with my mom ... she is like my child to me and it helps to come here and read others who have been in these circumstances.
Thank you, thank you soooo much!
I also have to tell you that since posting my first question here, they have released my Mother from the hospital and have told her she is strong enough for her next chemo appt (wed). They still want her to schedule a Colonoscopy (sp) in 2 weeks. She is putting all her trust in her Doctors and will do what they suggest for as long as she feels she can. My mother is Biploar, which makes things more difficult because sometimes they withold her meds and that creates a lot of undue stress for her *sigh*
I have watched a grandmother, 2 aunts, a sister, as well as many friends and other relatives go through Cancer and various treatments. This October will mark the 1 year of the loss of a sister who had battled pancreatic cancer for 18 months before succoming to the disease ... nothing, and I do mean nothing has compared to the journey I am on now, with my mom ... she is like my child to me and it helps to come here and read others who have been in these circumstances.
Thank you, thank you soooo much!
Hi, girls...
I couldn't have said it better than the three of you who commented on this thread.
This will help many women,new and old members, who are suffering from this dreadful disease,to make the right choices in their treatments recommended by their own Doctors to save their lives.
Thank you for stating in our Forum the truth about everything the three of you said.
I couldn't have said it better than the three of you who commented on this thread.
This will help many women,new and old members, who are suffering from this dreadful disease,to make the right choices in their treatments recommended by their own Doctors to save their lives.
Thank you for stating in our Forum the truth about everything the three of you said.
Chemo & rads saved my life. Will I have issues from side effects or perhaps another cancer from the radiation? Could be. Those are the things you learn when you have cancer and when you make choices for treatment. But just writing about it or being in and/or around it isn't anywhere near the same as living it. So saying it's time for a little truth means you believe it's time for a little of your truth. Here are some of my truths. You did not have the multiple surgeries that I went through nor did you sit in the chemo room having poison pumped into your system to hopefully shrink a 10 cm cancerous tumor like I did. You didn't have burned hands and feet and you weren't bald all over and in pain. You didn't lay still while they aimed radiation at your chest where your breast USED to be nor did you suffer the burned skin or fatigue that comes with it. During all this time I worked partly to keep my sanity so I wouldn't worry myself to death and partly because I needed to keep my insurance. But all the while this was going on the dear Mother of a gal I worked with had bilateral mastectomies with NO chemo and NO rads and she isn't here any longer. She believed in homeopathic ways and she was also a stage 3 cancer. You can spout off all you like but there are studies out there to prove that these treatments I did work . Alternate ideas are welcome along with corresponding studies by experts so we can all read it.
I'd suggest you walk a mile in our shoes but....no, I wouldn't wish that on anyone.
Oh, and as for gynecologists/obstetricians? A lot of them do cesarian sections for the reasons you mention but they didn't start doing that to excess until people started suing them like crazy. I have no fondness for big medicine and we all know some studies are skewed. We're talking about 30 years of studies and they all can't be wrong unless you're a consipiracy theorist.
I'd suggest you walk a mile in our shoes but....no, I wouldn't wish that on anyone.
Oh, and as for gynecologists/obstetricians? A lot of them do cesarian sections for the reasons you mention but they didn't start doing that to excess until people started suing them like crazy. I have no fondness for big medicine and we all know some studies are skewed. We're talking about 30 years of studies and they all can't be wrong unless you're a consipiracy theorist.
I am responding to the comment about saying "Human Pincushion"
That statement itself doesn't scare anyone.( this is my experience.)... but having multiple biopsies does.While I understand and agree that these issues need to be investigated, for someone like myself and countless others the procedure itself can be painful and frightening.Perhaps I am just a nervous ninny.These biopsies are necessary within the premise of catching early DCIS as well as giving proof that an area of "suspicion" was fully investigated.
....in my case, as many countless others.. I have every right to proclaim "human pincushion" while I am grateful to be able to find out what this is.
I have already had a Excisional Biospy on this breast in 2006 and results were negative after level 4 birads.Yes, my small breast is somewhat reformed.But I don't care thankfully.
Then a biopsy Stereotactic last year on the right breast.
I read one woman has had 9.
We join this forum to share our experience, ask questions get support and express fears.
....next biopsy via MRI is scheduled for the 13th, two areas level 4.
Hope I am ok, but yes.sorry .. I feel like a human pincushion.And.. yes.it is scary.
That statement itself doesn't scare anyone.( this is my experience.)... but having multiple biopsies does.While I understand and agree that these issues need to be investigated, for someone like myself and countless others the procedure itself can be painful and frightening.Perhaps I am just a nervous ninny.These biopsies are necessary within the premise of catching early DCIS as well as giving proof that an area of "suspicion" was fully investigated.
....in my case, as many countless others.. I have every right to proclaim "human pincushion" while I am grateful to be able to find out what this is.
I have already had a Excisional Biospy on this breast in 2006 and results were negative after level 4 birads.Yes, my small breast is somewhat reformed.But I don't care thankfully.
Then a biopsy Stereotactic last year on the right breast.
I read one woman has had 9.
We join this forum to share our experience, ask questions get support and express fears.
....next biopsy via MRI is scheduled for the 13th, two areas level 4.
Hope I am ok, but yes.sorry .. I feel like a human pincushion.And.. yes.it is scary.
Let me amend my last sentence. "Would you be surprised if I told you that many studies were intentionally deceptive?"
My daughter is a medical writer and researcher.
You have only to look at some traditional practices to question their validity. For instance, 32 per cent of all births are by caesarean section. If 32 per cent of human females could not deliver without surgery the human race would never have survived. So why are so many C-sections performed? Well, for one thing, the doctor makes twice as much money. For another he is not really fond of delivering in the small hours when most babies are born, or rmissing out on his weekends. As concerns men, prostate cancer is routinely treated with surgery. In fact most cancers of this type are not life threatening and most men up dying of something unrelated (having not had the surgery).
Don't believe everything you read. Most of it is preselected. If we are to trust the medical community and the pharmaceutical industry, tell me why they are advertising Advair on TV as a cure-all for COPD and asthma. The FDA sent out warnings in February about the use of this product. It declared that it should not be used unless everything else failed, and even then only for short periods. And why are pulmonologists still handing out Advair like candy for minor lung conditions, in spite of its serious side effects, the most notable being death.
We have to be knowledgeable about medicine in order to make the right decisions. And the decision always lies with us. We are the ones who sign and pay. Are there good, ethical doctors out there? Yes, and I have one. As for obstetricians I had to look long and hard to find one who was not knife happy. As it turned out he was German, not American. No surprise there.
You are concerned about the lady who listed her question. So am I, or I would not have bothered replying. It is time for a little truth. By the way, I have been in and around the medical profession my whole life. Would you be surprised if I told you that many studies were questionable?
You have only to look at some traditional practices to question their validity. For instance, 32 per cent of all births are by caesarean section. If 32 per cent of human females could not deliver without surgery the human race would never have survived. So why are so many C-sections performed? Well, for one thing, the doctor makes twice as much money. For another he is not really fond of delivering in the small hours when most babies are born, or rmissing out on his weekends. As concerns men, prostate cancer is routinely treated with surgery. In fact most cancers of this type are not life threatening and most men up dying of something unrelated (having not had the surgery).
Don't believe everything you read. Most of it is preselected. If we are to trust the medical community and the pharmaceutical industry, tell me why they are advertising Advair on TV as a cure-all for COPD and asthma. The FDA sent out warnings in February about the use of this product. It declared that it should not be used unless everything else failed, and even then only for short periods. And why are pulmonologists still handing out Advair like candy for minor lung conditions, in spite of its serious side effects, the most notable being death.
We have to be knowledgeable about medicine in order to make the right decisions. And the decision always lies with us. We are the ones who sign and pay. Are there good, ethical doctors out there? Yes, and I have one. As for obstetricians I had to look long and hard to find one who was not knife happy. As it turned out he was German, not American. No surprise there.
You are concerned about the lady who listed her question. So am I, or I would not have bothered replying. It is time for a little truth. By the way, I have been in and around the medical profession my whole life. Would you be surprised if I told you that many studies were questionable?
Ooops! You are right!
I was responding to the comment TO Sadyjade, BY allmymarbles.
I was responding to the comment TO Sadyjade, BY allmymarbles.
I don't think you meant to post that to Sadyjade, the original poster.
I think you were aiming that at the misinformation that allmymarbles posted. I personally don't know why she would post that either. I survived cancer so I'd say I was very involved in it and my opinion is quite different than hers. Just saying!
I think you were aiming that at the misinformation that allmymarbles posted. I personally don't know why she would post that either. I survived cancer so I'd say I was very involved in it and my opinion is quite different than hers. Just saying!
There is no definitive answer about what will happen if she stops chemo. The question is what if she continues on a different chemo like I did with a stage 3 chemo. At round 5 of chemo (which is where your Mother was) I had an extreme allergic reaction and they never gave that to me again. This is an advanced cancer and although it's not mets at this point continuing with a different chemo would make sense if she can tolerate it. Was it a taxane chemo that caused this reaction? If so, request that no taxane chemo's be given to her but have her consider a different cocktail such as gemzar/carboplatin for advanced cancers. This discussion really needs to be held between your Mother and her oncologist and she needs to make it quite clear that any further issues with chemo will cause her to discontinue, if that's what she really wishes.
And for you, the loving daughter, I have to say that if your Mother really wishes to stop chemo it is her right to live the rest of her life on her terms. I know that's not easy to read, it's even more difficult to understand. It's more of a way to live out our lives on our own terms with no regrets. I had the same cancer your Mother has but am 20 years younger. I've walked in her shoes. Tell her to talk to her oncologist... ok? They can make this doable if SHE is willing. Best wishes.
And for you, the loving daughter, I have to say that if your Mother really wishes to stop chemo it is her right to live the rest of her life on her terms. I know that's not easy to read, it's even more difficult to understand. It's more of a way to live out our lives on our own terms with no regrets. I had the same cancer your Mother has but am 20 years younger. I've walked in her shoes. Tell her to talk to her oncologist... ok? They can make this doable if SHE is willing. Best wishes.
I have serious doubts about some of the information you posted...
You mentioned that chemo and/or radiation only make 3 months difference over no treatment "in fatal cases," but most breast cancer is detected before a "fatal stage." Many people are able to live with a decent quality of life for years even after being dx with Stage IV BC, with the help of chemo and radiation. (And Sadyjade's mother was only dx with Stage 3B.)
I also wonder how you are defining "fatal cases," since that could only be determined after-the-fact, and obviously "fatalities" would not be given treatment!
You mentioned that chemo and/or radiation only make 3 months difference over no treatment "in fatal cases," but most breast cancer is detected before a "fatal stage." Many people are able to live with a decent quality of life for years even after being dx with Stage IV BC, with the help of chemo and radiation. (And Sadyjade's mother was only dx with Stage 3B.)
I also wonder how you are defining "fatal cases," since that could only be determined after-the-fact, and obviously "fatalities" would not be given treatment!
This information of ineffective chemotherapy and/or radiation is not consistent with the majority of reputable studies. What information is your daughter basing this opinion on?
Sadyjade is in a confusing and stressful situation and needs factual, objective information; not half-truths. If you make such claims, please provide the studies that you are using to back up this opinion.
Sadyjade is in a confusing and stressful situation and needs factual, objective information; not half-truths. If you make such claims, please provide the studies that you are using to back up this opinion.
As it happens I was speaking to my daughter last night about breast cancer and chemotherapy. This is a subject she is very much involved in. She gave me the surprising information that, after surgery, the difference between chemotherapy (and/or radiation) treatment, and no treatment at all, is an additional three months of life (for fatal cases, obviously). Additionally, removing the ovaries has no proven benefit. This is not what we are led to believe.
Also, and this I have known for some time, the improved survival rates for breast cancer are misleading. Breast cancer is now detected earlier, so the five-year survival rate of today does not compare with the survival rate of years ago.
I wonder if the doubtful efficacy of chemotherapy for breast cancer applied to all cancers. My sister had cancer of the liver and a chunk of liver removed surgically. (It was a matastasis from the colon although no cancer was found in the colon.) She had a couple of chemotherapy sessions, decided death was preferable, and never completed the course. She then solely relied on alternative therapy. That was six years ago. She is cancer free today. Maybe she was just lucky, or maybe she did the intelligent thing.
I do know, however, that should I ever develop cancer, I will have the surgery, and refuse all traditional treatment. But I will employ alternative medicine. This has helped me in the past when traditional medicine failed. There is a growing body of highly specialized alternative physicians. At this point in time they are hard to ignore.
Also, and this I have known for some time, the improved survival rates for breast cancer are misleading. Breast cancer is now detected earlier, so the five-year survival rate of today does not compare with the survival rate of years ago.
I wonder if the doubtful efficacy of chemotherapy for breast cancer applied to all cancers. My sister had cancer of the liver and a chunk of liver removed surgically. (It was a matastasis from the colon although no cancer was found in the colon.) She had a couple of chemotherapy sessions, decided death was preferable, and never completed the course. She then solely relied on alternative therapy. That was six years ago. She is cancer free today. Maybe she was just lucky, or maybe she did the intelligent thing.
I do know, however, that should I ever develop cancer, I will have the surgery, and refuse all traditional treatment. But I will employ alternative medicine. This has helped me in the past when traditional medicine failed. There is a growing body of highly specialized alternative physicians. At this point in time they are hard to ignore.
Wish I could help, but these are really questions that would best be discussed with your mom's doctors, who have all the information pertinent to her case.
Tell them you want a family conference for purposes of making informed decisions about her care, get between them and the door, and don't let them leave until you thoroughly understand the terms they are using and the implications of various courses of actions.
Best wishes to both you and your mother...
Tell them you want a family conference for purposes of making informed decisions about her care, get between them and the door, and don't let them leave until you thoroughly understand the terms they are using and the implications of various courses of actions.
Best wishes to both you and your mother...
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