BERIGAN Posted August 22, 2003 Report Share Posted August 22, 2003 My Mom has terrible health luck. This is not some made up stuff like someone else on the board apparently did with his health. Mom is a diabetic(for 20 years) Needs to take 2 insulins. Problems related to Diabetes include nearly losing a toe to infection. Her circulation in her legs is good(Thank God!) but the bones in her foot are breaking down. had to wear one of those horrible boots because of a broken bone in her foot, which made her bad back even worse. Mom's left foot is quite bad. Her foot turns off to the side, and she walks somewhat on the inner portion of that foot. Corrective shoes just made her balance worse. She has had laser surgery on both eyes(left eye a few times) because of bleeding blood vessels. Lost much of her vision in her left eye because of the surgery. Forget the name of her newer eye problem, but needed more laser surgery, had it done on her left eye which made it even worse. She is afraid to have it done on her "good" eye. Can't have her cataracts removed till the other eye is "fixed" Hard to compress her aliments into just a few lines, sorry! Her back was so bad a few years back, she could barely walk. Worse pain of her life she said. Had back surgery, better, but needs some bone spurs removed at some point. She can only stand up for 2-3 minutes, tops. Around Christmas time last year, she was quite tired, didn't want to see a doctor. Slept most of the day, just blamed a cold and her asthma,(She would get out of breath going to the bathroom and back) finally made her go to the doctor, found out she had atrial fibrillation, an irregular heart beat. Was quite ill the first part of year, but slowly got better. Now, to top this all off, she discovered a lump under her right armpit about 2 months ago. Saw her doctor who recommended a breast specialist. Turned out, he no longer sees new patients, and was then referred to someone my Mom's best friend saw, and did not like! Didn't want to see him, but there are few breast specialists on our side of town for some unknown reason! So she saw him, and liked him. It gets a little fuzzy in my memory, but as I remember the sequences of events, first time just a consultation, had to come back later for a biopsy. The day she comes back in was the day she got a second lump, looked like a bad bite, on her neck. first thought it might be lymphoma, but when he tried to aspirate, he only got blood, not other fluids. Asked if we had any Cats(We have 5) then says he thinks she just might have cat scratch fever!!! Great we think, no Cancer, just a weird disease. Mom is convinced she is going to be just fine. Turns out not to be cat scratch fever, I think he then does a biopsy. Thinks it most likely is lymphoma, and should be imminently treatable (His words) For some reason, it takes many days to get test results from the lab, seems like there was some sort of foul up. Much worry over a week-end. Tests come back, bad news. Not Lymphoma, most likely the cancer has spread from somewhere else. Not at all what we wanted to hear! Her Sister died of Pancreatic Cancer in 1987. Tumor still under her armpit. No treatment of any kind so far. Then she is told to get a cat-scan. She got that last week, and good news! No big growths, or anything unusual! Then a MRI of her breasts was ordered. (An earlier Mammogram seemed to show everything was a-ok, perhaps on tiny object in left breast to check later) This was a very, very hard test for my Mom. Not like other MRI's She had to lay face down. Did I mention her bad neck? Your breasts need to hang down into some sort of concave area. She took 2 pain pills and started to get ill during the test. So it was only half done. Doctor acts like this is the ONLY way to tell if she has Cancer in her breasts. I Don't see how my Mom, or any other disabled folks could be expected to lay face down for an hour on a hard table. Seems to be the only way, my Dad was told today. How did they know if someone had Cancer in the past before MRI's? I picked up the paperwork needed for the MRI last week and overheard the doctor was going on vacation the last week of August. So we wanted to know, no matter what to hear the results of the MRI were before he was back. Now the test is most likely not going to be good enough. I read on the web that tumors that were caused by a Cancer started somewhere else in the body leaves its own calling card, meaning, IF this was lung Cancer that started this, the tumor under her pit would show lung cancer cells in it. So, why leave the tumor there to get bigger, (And more painful) every day? Why not set up an appointment with an Oncologist a few weeks ago? This doctor would most likely remove the tumor there, and if she had one in her breast, but would not have anything to do with Chemo or radiation treatments. Yes, I know there are different types of Oncologists for different treatments/Cancers, but I have this awful feeling that once she is supposed to see one, it will be in late September, or even October!!! Meanwhile, the only thing my Mom has been able to do it pray, have others pray, and take some Herbs I read on the web were good for those with Cancer. Certainly better than nothing, but the Cancerous Tumor(s) are still there. Sorry for turning this into the longest , ramblingist post ever, but the jest of it is, my Mom is a quite a fighter, she does not want to die and has had a good attitude throughout this whole ordeal. But today really discouraged her. We all feel helpless. Why can't they find out were this is coming from? Why the tremendous delays? What does everyone here think? I know there are very smart folks on this board. Some have dealt with Cancer either with themselves, or with a family member. Should we move on ASAP? Call doctors, any doctors and start the process all over? I just have this terrible feeling all this delay is going to cost my Mom her life, because we just didn't do the right things. We put so much trust in Doctors(And I am sure many of you like us have dealt with a bad doctor or two thru the years) But it seems a blood test, removing the one Tumor, something should have been done after 2 months, doesn't it? The web is almost too vast on this subject, and when you still don't know what kind it is...... My Mom is only 62! If you read this far, thanks! Any advice apprieciated, here or by PM.... Quote Link to comment Share on other sites More sharing options...
Jim Alfredson Posted August 22, 2003 Report Share Posted August 22, 2003 Berigan, I'm sorry to hear about your mother. I lost my mother to cancer in 1997. Any chance of getting her into the Mayo Clinic? I would at least call them and talk to them and see what they say. Quote Link to comment Share on other sites More sharing options...
RonF Posted August 22, 2003 Report Share Posted August 22, 2003 Beri, I too am sorry to hear about your Mom's terrible luck. My wife's parents both dealt with cancer and insisted on being treated at MD Anderson in Houston. It has a wonderful reputation. Best to your Mom. Quote Link to comment Share on other sites More sharing options...
slsmcgrew Posted August 22, 2003 Report Share Posted August 22, 2003 Berigan, I suggest that you get to another doctor. One that seems concerned with treating your mother as soon as possible. Vitiman C is a good all-around suppliment for many health issues. My thoughts and prayers will be with you and your mother. Quote Link to comment Share on other sites More sharing options...
Soul Stream Posted August 22, 2003 Report Share Posted August 22, 2003 (edited) Berigan, I learned the hard way (through my father's death) that doctors don't really treat patients like they'd treat their own parents. My advice is simple... Don't waste time. Get to the absolute BEST doctor, at the BEST facility in the BIGGEST city you possibley can. TODAY. Your doctor sounds like a loser who's ALREADY wasted valuable time. Cat Scratch Fever?!!! Don't blindly trust doctors or think they know what they're doing. If it feels wrong to you, it IS wrong. Time is of the essence and your mother's life is at stake. Do it now. I know I'm coming off strong. But if I could go back in time and change some of our family's reactions and inactions, my father may very well be alive today. Don't make the same mistake I made. I hope for you and your family all the best. Edited August 22, 2003 by Soul Stream Quote Link to comment Share on other sites More sharing options...
Jazzmoose Posted August 22, 2003 Report Share Posted August 22, 2003 Berigan, I lost my mother to cancer, my stepmother, and now my dad's third wife is fighting it, so I can relate. (Like that helps!) I would echo Soul Stream's advice: find another doctor. Just like any other human activity, not all doctors are at the same level. There are bad doctors just like there are bad musicans. And your mother's doctor sure sounds like he's doing a lot of noodling with little content, ya know? Good luck! Quote Link to comment Share on other sites More sharing options...
Dan Gould Posted August 22, 2003 Report Share Posted August 22, 2003 Beri, Very sorry to hear of your Mom's condition/situation. It reminds me of my younger brother's experience. In his last year at Vanderbilt, he was constantly ill and ultimately ended up at Vanderbilt Medical Center, where cancer was suspected. In fact, while he was there having all of the tests done, his girlfriend stepped into the elevator with a couple of nurses, one of whom turned to the other one and said "Did you hear about that student, Peter Gould? Oh, its so sad-he has cancer." Which we hadn't even been told yet!! You can imagine his girlfriend's reaction. But get this-ultimately, the doctor's at Vandy decided it *wasn't* cancer and basically sent him on his way. By that December, he had graduated, moved to D.C., and found himself at Johns Hopkins, where in December of '95 they told him that he did have lymphoma, that it had spread to several locations and that there was a 20-25% five year survival rate. So, the lesson is as everyone has said-find decent doctors immediately. (So I don't leave you hanging and end this on a positive note, the short story is, I was a perfect match as a bone marrow donor, he's been cancer free for over 7 years now, and is now a graduate of William and Mary Law School and a lawyer in D.C. So don't give up hope!) Quote Link to comment Share on other sites More sharing options...
connoisseur series500 Posted August 22, 2003 Report Share Posted August 22, 2003 Sorry to hear about your Mom's health woes, Beri. I wish her well. Can't offer any advice on this as both of my parents suffer from diabetes but no cancer...yet. I know a lot about diabetes! Your Mom's story sounds like the story of one of my clients at work who was diagnosed with a tumor behind the ear. She couldn't get any doctors to agree on anything, and everything is still up in the air. Don't know what to say. Given the exorbitant costs of healthcare one would assume that one can go into medical facilities and get good treatment. Unfortunately, it doesn't appear to be the case. Let's just nationalize the entire industry, just like Mexico did with its railroads! Quote Link to comment Share on other sites More sharing options...
Christiern Posted August 22, 2003 Report Share Posted August 22, 2003 Berigan, I just came across this thread and wish to express my deepest sympathy for what your mother and the family are going through. At times like this, one feels so helpless, but I hope you find the right medical care for her. Quote Link to comment Share on other sites More sharing options...
catesta Posted August 22, 2003 Report Share Posted August 22, 2003 Don't waste time. Get to the absolute BEST doctor, at the BEST facility in the BIGGEST city you possibley can. TODAY. This is Great advice. Ask as many questions as you can think of. Get second, third, and even fourth opinions. http://www.usnews.com/usnews/nycu/health/h...specihqcanc.htm I'm sorry to hear this about your mother, and hope all goes well. My thoughts are with you and your family. Quote Link to comment Share on other sites More sharing options...
bluenoter Posted August 22, 2003 Report Share Posted August 22, 2003 (edited) Berigan, I lost my mom to cancer four years ago, and all I could stand to do was skim this thread. I know that some of these places were mentioned, but please look at the list linked at the bottom of this post and 1. Make every possible effort to get your mom seen and treated at one of these top cancer centers, at least initially. Cancer patients there really do have better outcomes statistically. 2. When you make the appointment, stress that you want your mom to be seen and treated by an experienced oncologist at the center, not by an oncology resident or intern. (We found that one out the hard way.) I wish you and your family strength and the best of luck. http://www3.cancer.gov/cancercenters/centerslist.html Edited August 22, 2003 by bluenoter Quote Link to comment Share on other sites More sharing options...
BERIGAN Posted August 23, 2003 Author Report Share Posted August 23, 2003 II want to thank EVERYONE who has commented, or sent a PM! I know that not only are the people on this board smart, but very kind as well! I am also very sorry for everyone that has suffered a loss from Cancer. I have always thought that I had plenty of sympathy/empathy for those who had family members who had Cancer, or those who had it themselves....In fact, my Dad had a huge Cancerous Tumor on one kidney, and that kidney was removed several years ago, but there was only one really bad day wondering if the Cancer had spread. Amazingly, it had not, he never even needed Radiation or Chemo! But seeing what we have gone thru in the last few weeks, and we haven't even gotten to the treatment part yet, I have a whole new understanding, and more sympathy than ever!!! My Mom talked today to this Breast specialist, and he has ordered a PET Scan.(Positron Emission Tomography, never heard of it before today!) Of course, that is next week, and the Doctor comes back from his vacation Sept 4th, the very earliest he could do surgery, and as I was telling my Mom, it might be weeks later than that! My Dad had a good idea, and called an old neighbor who is a radiologist in St. Louis, and he really scared my Mom, told her the pathology tests weeks ago could/should have told her what type of Cancer she had, and she was really risking her life not going to see someone else, NOW!. So she called an Oncologist we had heard about locally, and will see him next Tuesday. It is so very scary to have to put Mom's life in the hands of someone you do not know. I checked the links that folks here provided, and there seem to be some very well regarded facilities around the nation, none of which seem to be near Atlanta! Damn! My Mom can't really keep her feet down for extended periods because her feet swell from the Heart condition, plus her back is so bad, she cannot sit upright for more than a few hours, tops. She retired from Delta a few years back, so getting to another city itself is not the issue. But since this is a life of death issue, we will have to get creative,fast, if we are not crazy about this new doctor. There are of course Cancer centers in Georgia , and Atlanta in particular, but none made the lists. Anyone here anything good about any Facilities, doctors in this area? B3-er mentioned Mayo (Thanks!) and I know there is one in Jacksonville, where we used to live, but it was not on any lists. Anyone know anything about it? Being Mayo it can't be bad, just curious. Her insurance might not cover it, we need to find out next week. Kind of beat now, there was something else I know I was going to ask everyone, but can't think of it right now....anyway, thanks so much for all the help, and if you can think of anything else, please let us know! Conrad, AKA Berigan Quote Link to comment Share on other sites More sharing options...
JSngry Posted August 23, 2003 Report Share Posted August 23, 2003 I've been too busy posting silly album covers to take note of this thread (sorry), but let me now join thoise who have voiced their sympathies, concerns, and opinions that other medical care be sought. My only "advice" is to echo those who have suggested seeking not only a doctor, but a dedicated oncology facilty, preferably one that is constatnly involved in ongoing research. There's always the fear, not totally unfounded, that the patient will be used as a "guinea pig", but there's also the reality that such places are also usually aggressive in treatment and have access to state-of-the-srt equipment and techniques. And stay strong - it will sometimes seem impossible, but somebody in the family needs to stay centered because there's quite possibly one hell of a roller coaster ride ahead. Remember - no matter how deeply you love your Mom, your dad loves her at least as deeply, and he's know her longer than you have. You'll need to be there for him too. Again, you and yours have nothing but my best wishes and will be in my prayers in the days ahead. Quote Link to comment Share on other sites More sharing options...
Soul Stream Posted August 23, 2003 Report Share Posted August 23, 2003 Berigan, sorry if I missed this information elsewhere, but... Do you live in Atlanta? I'm curious as to where you are seeking medical help at this point. Are you going to a doctor connected to a major facility in Atlanta on tuesday? I hope your family is doing o.k., it's very hard to make these decisions I'm sure. Quote Link to comment Share on other sites More sharing options...
Shrdlu Posted August 24, 2003 Report Share Posted August 24, 2003 Sorry to hear about all the health problems your Mom has been going through, Berigan. Will be praying for you all. Quote Link to comment Share on other sites More sharing options...
bertrand Posted August 24, 2003 Report Share Posted August 24, 2003 Berigan, You and your family are in my thoughts in these difficult times. Bertrand. Quote Link to comment Share on other sites More sharing options...
DrJ Posted August 24, 2003 Report Share Posted August 24, 2003 (edited) Like Jim I'd also missed this thread while looking at other discussions. My thoughts are with you and your family. My advice is a little different than others, and because I am an academic family physician at a large medical center it comes from a different perspective: you MAY need another doctor/facility, but what it really seems is drastically needed RIGHT NOW is that you get more information from her current treating doctors, that you begin a more open dialogue - say a sit down, lengthy, no interruptions family meeting to get the concerns on the table and get the questions answered...if that doesn't happen - if they are evasive, or blow you off, or don't seem to know what they're doing, THEN start doctor shopping. But that can be its own nightmare for the family, believe me. I say this for several reasons: 1. There are way too many "unknowns" at this point in the information you've posted here for ANYONE to give you decent specific advice about what to do. In reading it as a doctor, the workup they have done so far actually makes perfect sense. Diagnosis of many problems, including enlarged lymph nodes, is often difficult - there's a long list of things that cause what your mom has, and working through them systematically is the way to do it. So far, I'm not seeing anything out of line medically - the MRI, biopsy, etc all make sense - but again, it's sketchy what we have to review. In your discussion with the doctors, it will be really important to find out the prognosis here. Some tumors you're far better off leaving alone as far as local surgery, because if they are either best treated systemically (because the tumor cells in the growth are just the tip of the iceberg), or not curable at all (I sincerely hope this is not the case), then you just put the patient and family through unnecessary, painful surgeries. You again have to know A LOT more about what you're dealing with. Get empowered, get information! Do NOT take "no" for an answer in asking the doctors to meet with you and the family. 2. People mean well with their advice about taking vitamin C etc, but unless one really knows what they're talking about, wading into a discussion on the Internet about how to treat a potential cancer is just plain foolish and may be dangerous. Even as a primary care doctor who knows his patients well, I shy away from recommending specific cancer treatments because that's not something that anyone but an oncologist can truly keep up with. 3. Seeking 2nd (and 3rd or more) opinions is often a good idea, but remember that in medicine there is almost NEVER a single best way to do something, and that is magnified for treating cancers that are not very common. So you might get 3 or 4 different opinions, each with its own merit, and the real important thing is NOT trying to decide which is "better" but which group of doctors you feel most comfortable with. I'd strongly advise waiting on doing this until you've tried to engage her current treating doctors and know more about what the hell is going on. 4. Finally, some BIG words of reassurance - although patients and families often have a hard time believing it, MOST CANCERS GROW FAIRLY SLOWLY. So even if it is worst case a cancer, a "delay" of 2 months to work it up properly so one knows what exactly they are treating and how to treat it is NOT going to impact on prognosis. That doesn't justify unnecessary delays in any way - I wouldn't put up with long delays to get tests scheduled - but it does help to reassure people while the correct workup is being done. It is far better to do this than to leap in and remove a tumor in someone with diabetes (especially if it's poorly controlled), which negatively impacts on immune function and healing in a major way and can result in major post-op complications such as raging infection at the surgery site and sepsis (blood infection). My own grandfather died from post-operative blood infection after a relatively minor toe surgery (which we'd all advised him not to have) because he had an underlying illness that impaired his healing and immune function, the wound site got infected, and then spread to the blood. So this is something that is not just abstract for me, it hits close to home. Again, it's REALLY important to go at this with a clear head and as much knowledge as you can gather. SO - SIT THOSE DOCTORS DOWN WITH YOU, YOUR MOM, and WHOEVER ELSE IN YOUR FAMILY IS INVOLVED and have yourself a conference, where you don't leave until you feel your questions have been answered. Even if they are NOT answered to your satisfaction, you will feel somewhat better - you'll then have the clear answer that these guys are definitely not docs you want to deal with and can move on without doubts. However, if they DO come through as most doctors will when they realize they haven't been as forthcoming with their thinking as they should have been, then you will feel better and, more importantly, your mom will have the best chance possible for recovery. Again, my sincere hopes that everything works out well. Edited August 24, 2003 by DrJ Quote Link to comment Share on other sites More sharing options...
paul secor Posted August 24, 2003 Report Share Posted August 24, 2003 Berrigan, It seems like you've gotten a lot of advice here. All I can add is take what you and your family feel comfortable with and go from there. Last month I lost a very good friend to cancer. However, I'm not posting this in a negative way. She loved life and was the strongest person I've ever known. For seven years, she underwent various treatments between remissions - chemo, radiation, laser surgery, steroids, even drinking poison ivy tea (which her doctor recommended, and which seemed to do her some good). In May of 2001, her doctors said her cancer had spread to her brain and gave her a month to six months to live. She lived for over two more years, and was able to enjoy her life and spend it with her family and friends. Try and give your mother all the support and love that you can, and help her to enjoy life as much as she can. It sounds like she's already gone through more than anyone should have to. She must be a very strong person. My prayers are with her. Quote Link to comment Share on other sites More sharing options...
SEK Posted August 25, 2003 Report Share Posted August 25, 2003 Berigan, I lost my father over the weekend, so I missed this thread. I am distressed to read about the difficulties your family faces, as you struggle to unravel your mother's health problems. What you seem to lack is a definitive diagnosis. And, of course, diabetes can complicate any diagnosis and treatment. I am a longtime brain cancer survivor. I continue to beat the odds - by over a decade now - after 4 surgeries, radiation, and a lot of luck over the past dozen years. DrJ's advice and insights ring truest to me. I also know, from experience, that the biggest problem can be finding a suitable place to receive diagnosis and treatment. I was very fortunate that my tumor was relatively slow-growing, because I was sidetracked for a few years by some local physicians' ignorance/negligence before I got to the University of Michigan, through the efforts, good graces and insights of a radiation oncologist at Sparrow Hospital in Lansing. Since I arrived at U of M, my diagnoses have been as definitive as the state of the art has allowed, the communications have usually been excellent (and without prodding-ESSENTIAL), and the treatments I have received have, consequently, been appropriate. You and your mother have my best wishes and high hopes. Steve Quote Link to comment Share on other sites More sharing options...
maren Posted August 26, 2003 Report Share Posted August 26, 2003 Berigan, I second (well maybe it's SEVENTH) the University Hospital idea -- sent you a PM -- wishing you and yours the best. Quote Link to comment Share on other sites More sharing options...
BERIGAN Posted August 26, 2003 Author Report Share Posted August 26, 2003 (edited) SEK, So sorry about your Father! You are quite the fighter, and it really paid off! Glad to hear that a delay in diagnosis doesn't always mean it is too late. A few years! I hope that doctor is paying much more attention to his patients these days, or better yet, is now out of the medical field. Sounds like you could be a motivational speaker for fellow cancer survivors. Did you go to support groups? Edited August 26, 2003 by BERIGAN Quote Link to comment Share on other sites More sharing options...
SEK Posted August 27, 2003 Report Share Posted August 27, 2003 SEK, So sorry about your Father! You are quite the fighter, and it really paid off! Glad to hear that a delay in diagnosis doesn't always mean it is too late. A few years! I hope that doctor is paying much more attention to his patients these days, or better yet, is now out of the medical field. Sounds like you could be a motivational speaker for fellow cancer survivors. Did you go to support groups? Berigan, Thanks for your sympathy concerning my father. My father's death followed a prolonged decline; the last 5 weeks of my dad's life were especially difficult, but the last day was peaceful. His death was a release for everyone involved, especially for my dad. "I'm a lover, not a fighter"; I have exceptional luck and a good network of friends. My friends (and the music!) continue to serve very well as my "support group". Though I taught at a community college (computer science) until I got sick, I've never felt the desire to be a "motivational speaker" (or whatever) for groups of "survivors" or people who are in treatment or who face treatment. My health and state of mind have often been a bit tenuous, and I've usually felt that the struggles that different people go through as well as the varying courses of their different diseases make coping with a "terminal disease" a very individualized kind of thing. Still, over the years and almost from the beginning, my wife and I have somehow become magnets for many people with serious diseases, their families, their friends, and friends of friends (I'm sure that this kind of thing happens a lot). We try our best to help and share experiences that may be relevant. I don't generally kick myself (there never has seemed to be enough time), but I sometimes wonder how my fate would have improved if I had been appropriately concerned and assertive enough when my first symptoms appeared 4 years before I finally got myself to a place where I was correctly diagnosed (I actually should have gone to U of M immediately, but I had heard -and believed- a lot of b.s. about university hospitals). I am one of the few persons that I've known with a serious cancer that had more than 4 years to survive, let alone 4 years to be flailed around by incompetent doctors. (Incidentally, all of the negligent doctors that I saw are still in practice, but one of the main guys has since gone into psychiatry, so at least he's less liable to mishandle someone who comes to him with cancer). My atypical story can serve as evidence that, as you stated, a delay in diagnosis doesn't always mean it is too late. But... I do hope that soon you can get a better handle on what's going on with your mother and then have some hopeful options. Steve Quote Link to comment Share on other sites More sharing options...
jacman Posted August 29, 2003 Report Share Posted August 29, 2003 Berigan-i've been away for a while, so i apologize for the late post. i've been an RN for 20 plus years, and have dealt with cancer patients extensively. one thing i've learned is that someone in your family needs to take the bull by the horns and be very proactive regarding getting your mother treatment. if theings are taking to long (tests doctor appts) call the insurance company and complain. the squeeky wheel gets the grease. be polite, but firm. i if i can answer any questions for you, feel free to PM me. Quote Link to comment Share on other sites More sharing options...
Soul Stream Posted September 2, 2003 Report Share Posted September 2, 2003 (edited) Berigan, Don't know if you're still checking in at this point but I saw a show on MSNBC tonight. It seems to be a weekly show perhaps, called "Titans, with Maria Bartiramo (the host.) This week it was the "Titans of Cancer" and included a panel of the top cancer researchers, hospital adm., ect. The panel included the President of M.D. Anderson Cancer Hospital in Houston , TX among others. Also, it listed the top 5 Cancer hospitals in the country. M.D. Anderson was ranked number one. It might be worthwhile to see if this show is playing again, or pehaps obtaining a video copy of it from MSNBC. It covered the whole spectrum of what someone facing cancer should be aware of, treatments, clinical trials, dos and don'ts, ect Advice from what seemed to be the top people in the field. Just thought I'd let you know. Hope you and your family are doing o.k.... Edited September 2, 2003 by Soul Stream Quote Link to comment Share on other sites More sharing options...
BERIGAN Posted September 3, 2003 Author Report Share Posted September 3, 2003 Thanks again everyone for all the suggestions and the kind words!!!! It means a lot to me..... My Mom saw her new Oncologist last Thursday. We like him, he seems to get the urgency of the situation. I doubt she will see the breast specialist again....hell, he is just getting back from vacation Tomorrow. The new doctor, with a hard to pronounce name seemed quite thorough. He is part of a practice on the south side of Atlanta, where we live. I went along with my Mom and Dad to meet him, because I was going to check him out, and if we/I didn't like him, it was to Emory, Mayo, the Houston clinic, anywhere, to find a good Doctor. We had brought along records from her recent CAT scan, the half done MRI, x-rays, and records from her stay in the hospital around New Years for her Heart condition. We had to cancel the first appointment with this new doctor last Tuesday because the skeleton staff at the breast doctor's office claimed they could not get the records copied in time for Tuesday. So, anyway as the doctor is looking thru 20+ pages of records, not to mention the films...he says something to the effect of, Wait a second! This report from the radiologist dated 12-29-02, mentions an enlarged Lymph node!!! Man, I felt the blood drain when he said that. He seemed kind of stunned himself. Seems at the bottom of a page there is mention of a 4.7 cm mass. Of course, no one saw fit to mention this at the hospital, nor did any of the heart specialists that saw her, and she saw 3 or 4 when she was in the hospital for a week. I recall getting kind of concerned when we didn't hear back as soon as they claimed we would on the CAT scan ....Think it had to do with her being slightly anemic. They did a lower G.I. and this CAT scan and we were told the only thing that showed up were a few small gall stones. So someone really dropped the ball, and even though they are paid well into 6 figures, could not be bothered to read what the Radiologist said, and the radiologist didn't seem to word it in such a way to make it a real red flag! So Mom could have had treatment right away, and instead has had the tumor(s) growing for 8+ months without treatment. We are mad, but still kind of in shock, I think we are just more concerned with getting her well first, then worrying about suing....her nephew came to visit just as we found this out (He is a Public Defender in Northern California) and thinks we should sue now...I just don't know if the stress on my Mom is worth it. He said we have a year from finding out about the negligence to sue...might just want to wait till Mom is stronger. The Doctor said on a scale of 1 to 4 with 4 being the most serious, this case is at least a 3 with the size of the one tumor, and the spreading. Perhaps a 4. He has ordered the PET scan that still was not ordered at the other Doctor's office. He ordered another CAT scan that she had today, to see how much bigger the main tumor had gotten in the 3 weeks since the last scan. Her lymph nodes on her neck have gotten even bigger in the last few days, very scary. She just wants treatment, today!!! The doctor had said that there are many types of Chemo, and that hers would as of now have to be classified as a Cancer of unknown origin. He had mentioned starting her on Chemo either this Friday, or perhaps Monday. I don't know if he wants all the tests done before hand,(Bone scan is the 18th, I think) but she needs to get started ASAP if there is to be a fighting chance. The doctor said the right things when we saw him , he was upfront, didn't sugarcoat anything(As her Neurologist claimed most Oncologists like to do) but still was optimistic. He said if Mom had any questions to call, that he was at this office 5 days a week. I don't know if it is like it is here in Atlanta where everyone else lives, but most Doctors seem to want to spread themselves between 2 or 3 offices, and you can only see them on Mondays unless you want to drive 55 miles to their other office where your records or not on hand. He talked about a support group at the same clinic we were at, and something about 80 oncologists somehow involved(Some information is still a blur) He gave us all confidence, and hope as we left his office, we got less secure feelings once we left, just because we all know how serious this is, and LOTS of time has been wasted by health care professionals who could/should be better than they have been to my Mom. They should treat any patient like they were a relative, not just a number. It is funny, with my Cousin in town, Mom perked up, and she made it abundantly clear to the Oncologist that she isn't ready to die, so that is important, and for the most part, she has kept herself positive, and we have tried to do the same for her. Things will seem just about normal for a few days....Last night when she showed me how the lumps in her neck, I could tell she is getting very concerned, as if she wasn't already. She is more concerned for my Dad and Me, than herself... a truly selfless woman. So, if anyone here has been putting off getting any kind of medical test, or has a stubborn family member who needs one, for God's sake, get in there and get the test! Quote Link to comment Share on other sites More sharing options...
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