<p>That’s really sad, EPTR.</p>
<p>For cancer patients, who or what funds the network or team of docs, therapists, chemo, reconstruction, etc? Do cancer patients have it “better” in that the American Cancer Society has funds to organize all this? Is it because there is no huge ALS society that there is no comparable care for ALS patients?</p>
<p>I really don’t know how this works and am surprised by the disparity.</p>
<p>I don’t know either. I mean I thought that organizations like the American Cancer Society funded research primarily.</p>
<p>Just popping in to say thank you for those who are posting here. I’m still reading, still learning, still pondering it all. </p>
<p>Some thoughts and reactions: </p>
<p>Maybe if other conditions that are similar to each other “banded together”, there would be more funds available to create centralized care centers with a team approach.</p>
<p>Friends and family who say inappropriate things are often shocked by the news of a diagnosis, and don’t intend to be inappropriate. Try to cut them some slack. Feel free to tell them “I wanted to let you know, but I don’t want to talk about it.” But if they give you unsolicited advice, try to understand that they’re hurting too and just trying to help…and they KNOW you’re hurting more than they are.</p>
<p>I’ve spent a lot of time with family caregivers. There are those who complain that nobody else steps up to help. There are those who complain that people give them unsolicited medical advice. In my experience it’s better if you learn to ask for specific help, and to say “thank you” and then ignore advice you don’t want. </p>
<p>Being in the midst of medical turmoil is not the time to alienate your friends and family.</p>
<p>Not all unsolicited advice is wrong.</p>
<p>Disease isn’t a competition. If you have something really bad, that doesn’t mean all your friends and family all of a sudden have no problems that they need/want to vent about.</p>
<p>Sigh.</p>
<p>EPTR: I have no idea. In any case, if it’s not the ACS, there are other organizations that provide hats & wigs to chemo patients, support for breast cancer survivors, and so forth. I have not heard of similar groups for ALS. (The ALS Support Group that I know of just provides a place to discuss & vent.)</p>
<p>Sadly, EPTR’s friend’s experience is all too common. It’s the reason I started this thread in the first place, to understand why there’s so much disparity between cancer and “just about everything else”.</p>
<p>There is a group that supports ALS patients. I can’t think of the name right now but I thinks it’s the ALS Society. They are wonderful and offer used equipment, support groups, etc. But it is left up to the patient to seek them out. And they don’t provide any medical support. I think that’s the key. Some kind of patient advocate who maintains contact with the family and patient, anticipates needs, refers to psych support, etc. If the family is left to do that all on their own, it is overwhelming.</p>
<p>I do know that some neurological diseases are grouped together for fundraising. MS and ALS are together for some stuff.</p>
<p>I wonder if other countries have a different model for coordinating health care than we have here.</p>
<p>I’m not sure where everyone gets the idea that a network of care is set up for each cancer patient. I honestly don’t know of any cancer patient that has been offered all that you folks are talking about. I have been a patient at three cancer hospitals, Sloan Kettering, Dana Faber, and my local center. Never ever was I offered therapy, family counseling, naturopathy, nutrition counseling or anything like it. When I got my diagnosis the receptionist set up a few appointments for me, with my oncologist, my surgeon and the chemo center. I went home with these appointments like any other appointment. When I decided I wanted a second and third opinion I had to call these centers and beg them to look at my records. To go out of state I had change my insurance coverage which cost me precious time. When I went back and forth from Boston to NYC for my appointments over the course of a year I had to pay transportation costs as well as lodging costs for my husband (he did get to stay at Miracle House for $50 a night when I had surgery there). Over the six and a half years I have had no “perks” at all. In fact, it’s been a huge financial burden even with insurance. I’m not sure if it’s different with breast cancer. But, I do know that my story is the norm among colon cancer patients. Survivors make their appointments and fly all over the country to get treatment that they find out about on online support groups…on their own dime.</p>
<p>My friend was diagnosed with cancer when he was about 40. His HI docs basically told him to get his affairs in order and that was about the extent of it. They told him it was very advanced and hopeless. He & his mom at huge personal expense out of pocket (he had lost his insurance) had to fly to Sloan Kettering in NY, where he had surgery and treatment for a prolonged period of time. He went back to HI for follow up treatment. </p>
<p>A few years later, there was a recurrence of cancer and again he was told by his HI docs to get his affairs in order. He and his mom again flew to Sloan Kettering in NY, where he again got treatment for several months. He again returned to HI for follow up treatment. He is alive today at 57 because he and his mom did their own research and refused the fatal diagnoses he was given by local docs. No one helped him along the way, except perhaps the folks at Sloan Kettering (who were paid for their services), after he & his mom made contact there.</p>
<p>Ideally, there would be more integration and more holistic treatment of patients with all chronic conditions, as it would improve quality of life and reduce anxiety, redundancies, unneeded stress, and probably provide better outcomes. We’re obviously not there yet for most conditions, and apparently not for cancer either. </p>
<p>In some areas, cancer navigators provide a glimpse of what COULD be if there were people to help navigate through the maze known as the medical system. Ideally, the maze will somehow be reduced and more “navigator-type” people would be available to help provide better results for patients and families. These cost some resources but likely also save many.</p>
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<p>It seems similarly strange to me to say that I’ve had cancer, based on the fact that more than 10 years ago I had to have a squamous cell carcinoma (not caused by sun exposure, so who knows why it occurred) removed with Mohs micrographic surgery. Technically, I suppose I have, but it just doesn’t feel right to say it, probably because of my own ominous associations with the word. It was certainly unpleasant, but there’s been no recurrence, and if I had to list the ten worst health crises I’ve ever had, it wouldn’t make the list.</p>
<p>OP, I appreciate your starting this discussion as it’s something that has been on my mind quite a bit lately after being diagnosed with an incurable “orphan disease” for which the treatment choices are bad and worse, but the alternative is sure death within a year. Due to its rarity, there is precious little clinical research being done so the treatment protocols are “borrowed” from other diseases for which there is research funding. (BTW, I lost my uncle to ALS and have lived through that hell on earth so I wouldn’t dream of comparing one person’s misery to another’s.) </p>
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<p>That has certainly been my experience so far and thank the Lord for the kindness of strangers you meet online. They have literally become my lifeline as I try to identify and gather the resources I’ll need to fight for my life. If there’s a bright side to this, it’s seeing that people are generous with their time, their knowledge, their faith, and support. Sorta like so many of the folks I’ve met here on CC.</p>
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<p>I’m so sorry about your diagnosis. I truly wish you all the best. </p>
<p>You’re right, it so astounding how much information and support I have received from my online support group. When I was first diagnosed everyone told me to stay off the internet. And, I did for awhile because I thought it would scare me too much. It wasn’t until I joined the support group that I began to feel more comfortable with my situation. I have seen amazing things happen because of this group. People have actually learned of treatment options online, brought them to their own oncologist and became cancer free.</p>
<p>I’m glad you were able to find something as powerful.</p>
<p>Yes, strangers I have met online have made a world of difference to me. It was very scary and lonely for me & my kids to get chronic disease diagnoses and not be able to connect with people like us anywhere locally. I was grateful that I could connect at least on-line and since then have gone on to create local support groups IN PERSON, so that people can learn more about their condition and share information face to face. I am helping create the community I feel our area really needs locally as well as nationally, creating and attending local and national and even a few international events. It has been a very interesting world, one I would never have entered if I had not been diagnosed with a severe, chronic disease. </p>
<p>We have found some experts for our kids via the internet that we would not have otherwise. It has been helpful and supportive as well. In a perfect world, it would have been easier to locate these individuals, but I am glad that we were able to find them anyway and that they have helped provide better care for my kids. We hope that through their care, our kids will be able to live more “normal” lives, with stamina that eludes them currently.</p>
<p>Worrywart…sorry to read what you are going through.</p>
<p>I have Stage IV cancer and I have had to be my own advocate for much of my two-year journey so far. I had to fight with my insurance company to get my wig paid for, because the receipt called it a ‘wig’ and not a ‘hair prosthesis’. Nobody offered me a free one. I happen to have an extremely rare cancer (spindle cell carcinoma) and nobody holds fundraisers for me. The breast cancer walks I have gone one to support friends are mostly about that, supporting friends. That being said, one of the reasons cancer gets a lot of attention is that men have a 1 in 2 chance of developing cancer , women 1 in 3, in their lifetime. Everyone knows someone who has cancer. I hope all of you are in the group who do not develop it. Cancer sucks.</p>
<p>My husband was diagnosed with stomach cancer almost three years ago. Let me add my voice to those who suggest that when speaking to someone that you just found out has a potentially life ending serious illness DO NOT OFFER ADVICE.</p>
<p>We have had people say “Has he tried ensure?” No. Because we’re idiots and it never occurred to us that it would help.</p>
<p>Or “I know a really good doctor”. Thanks, but ours has gotten us this far and he’s still alive and we trust the doctor. Not about to jump ship now because yours is three miles closer.</p>
<p>My least favorite: any reference to “it’s God’s will, I’ll pray for you”. Really? You think we did something to deserve this or that God will somehow listen to you but not us?</p>
<p>Or, of course: “stay positive”. Easy for you to say.</p>
<p>I agree with others here that cancer gets more attention because almost everyone knows someone with it. Those other diseases are in no way less deserving of attention or sympathy, but I don’t live in fear of those as much.</p>
<p>People wonder when somebody they know gets a terrible diagnosis, “What should I say?”. I have wondered myself. </p>
<p>Well again… Here is a little help…“DO NOT OFFER ADVICE”.</p>
<p>Tpshorty and fordiscussion, sorry you are going through what you are going through.</p>
<p>I agree with everything you wrote fordiscussion.</p>
<p>I think I totally understand the OP question. It is not to “compare” or set up some sort of “competition” among illnesses at all. But people generally do use the word cancer as a synonym for the worst thing that could happen to me. And believe me, i know from cancer. My DH and I have both had it as have many friends and family.</p>
<p>But the older I get and the more people I know struck with illnesses and conditions, the more I find myself saying, “wow, that’s a terrible thing to get.” </p>
<p>Things like</p>
<p>ALS
Huntington’s
Spinal cord injury
Aneurysm (can you imagine walking around knowing there is bulge in your aorta that could blow at any minute, causing death almost instantly? My mom did for years until it was necessary to operate)</p>
<p>Dementia - just check out the Parents caring for Parents thread to read about all the horrible situations parents and their adult children are going thru</p>
<p>Sclerodema
COPD/Pleural effusion</p>
<p>I could go on. . . I do think the pervasiveness of cancer is what gets attention, even though “cancer” is really a label for a thousand discrete diseases. And the level of care coordination varies from condition and institution. In all cases you had best be your own advocate.</p>
<p>Another one: “everything happens for a reason”. I think that’s terribly insulting and dishonoring to the pain and sadness people experience.</p>
<p>I don’t know know if “do not offer advice” is always the case. I offer advice a lot when it comes to pediatric cancers because I am very familiar with resources and care available for families with children that have cancer. I’ve told famlies with limited resources and local hospitals not experienced/famiiar with pediatric cancer to RUN not walk to St Jude’s or other specialized cetnter. There is some advice that is too important not to give. If anyone knows of specific helpful things, absolutely, offer advice. I do it all of the time. </p>
<p>I think the advice to refrain giving is on more general things like supplements, parenting, things that are not so specific. Also when giving advice, when doing so personally, I am prepared to back it up with working with the person I am advising. I will make the calls, get the referral paper work, and do what is needed. But yes, I do advise people to contact Make-A-Wish and get that trip to Disney World or Shopping Spree, get the free parking from some agency offering it, get to different hospital, etc.</p>
<p>My BiL was recently dxed with cancer, and I kept my mouth shut about what I thought about medical care in his area since his situation was rather common, and the care considered routine and he and his wife thought the surgeon walked on water. That MD Anderson is in their state and is ranked #1 for cancer care, was on the tip of my tongue, but I did keep quiet. </p>
<p>Well, things have not gone well, and that’s where he is ending up and his wife just said to me that she wished I had said something earlier. I did open my big mouth when the complications came up and the surgeon they so loved put his hands up and said that was not his department and the other doctors are saying how rare and unusual this situation is. You do NOT want to be rare and unusual in cancfer care.</p>
<p>I don’t even know iif cancer is so different in terms of care and support. It depends a lot on the cancer you have, the local support groups and medical centers you have for any medical dx. Pediatric issues, for example have all kinds of support groups and resources that are for children under the age of 18. It’s a whole other story for adults being treated for cancer at, say Memorial Sloan Kettering, than children. Can even be the same cancer, but the resources, supports, treatment options, etc are completely different. My son is a childhood leukemia survivor but an adult dx is a whole other thing. I can and do give a lot of advice for anyone with a child with leukemia, but, have little advice to give, for adult leukemia. Anyone with specific info to give and know the resources, know the spiel, and especially if personally entrenched in that world should impart what knowledge they have to anyone in the same situation. </p>
<p>And here is some advice for me for anyone who has a medical diagnosis that requires a lot of treatment --find the support groups in your area, and nationwide and get all the info and advice out of them. The hospital, your doctor may not know all of the things available to you, things as simple as reimbursement of parking costs, support groups themselves, groups that can get you equipment and discounts.</p>
<p>So much I want to say, but for now I’ll just post a link to one of the most helpful organizations I’ve found. As its name implies, it’s for spousal caregivers. It’s international, so different types of support in different areas, but in my area (Central NJ) we have an active group that meets for dinner on a monthly basis. Our spouses have a wide range of diagnoses, but as spousal caregivers we have a lot in common, and the support we give each other is both practical and emotional. For those who don’t live near a meeting, there’s online and phone support, and much more.</p>
<p><a href=“http://www.wellspouse.org%5B/url%5D”>www.wellspouse.org</a></p>