Bone Mets Thread
Comments
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Wow, GumDoctor, that is very heavy stuff to be dealing with!! If it makes you feel any better, I seriously doubt that suing the doctors would make you feel a whole lot better, other than the satisfaction of hopefully fixing the situation for the next breast cancer patient, because it would come at great expense to your precious life, losing time and energy spent squabbling with miserable lawyers and bureacrats fighting you every step of the way. I don't know how old you are, but dealing with student death sounds like you are still on the young side- and working is really important to ones sense of worth, happiness, productivity, social involvement, etc, so are you free to maybe set up your own business or pick up a new cause to support in volunteer work? The best outcome may be that you persist and survive and thrive despite all of this, and benefit from the new therapies that are hopefully coming our way. Not knowing anything for certain of what the future holds makes us all crazy, but what if you able to turn your life turned around on a dime to move into a totally new direction you would never have considered before, and end up in a much better place? In reality, the Army should be enlisting you as a speaker for every medical unit and Army hospital in the country- You could educate them not only about how not to screw up, but also in what it means to be have MBC in the current world, so shame on them..
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Cure-ious,
Thank you for the thoughtful reply. I am not young. I have been paying on my student loans for 31 years. I am 61+.
I will not do anything with private practice again. I literally locked the door and walked away from private practice and joined the Army. It is all about money, not caring for people. Nothing like what I dedicated my life to do...study, become really educated and help lots and lots of people.
Yes you are right that suing does not make up for their negligence. But...it means I and every single active duty military member HAVE NO RIGHTS against malpractice. With my 13 years of patient safety work, I know FIRST HAND how they only listen when it hits their pocketbook. I am not the first they have killed. And I will not be the last. Until they get sued, they will never learn and change. And yes, I would like to prevent this from happening to anyone else. It is too late for me. But I do not wish this nightmare on my worst enemy.
As for going in a new direction with my life...how I wish that were possible. 3 months ago, the Army docs told me I have less than 12 mos to live. I know, I know...we don't want to listen to these bits of information. No one really knows. But they treat me like I am in hospice already. Yes we can mentally overcome alot of this MBC mind game. But I am here pouring my heart out today because it is incredibly difficult to overcome. I am not saying impossible. But I AM saying, incredibly difficult to overcome the mind's way it responds to all this stuff. I would use someone else's s word (read a few of those today
) but working on my language in general. The rage I am working on invokes ALOT of choice words out of my mouth. My go-to word does not start with an s...Gumdoctor
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hi everyone! I have been meaning to post in this thread for days now and haven’t been able to bring myself to do it. Having been apart of a wonderful thread of amazing women 2 years ago as we all went through our treatments together, I know how vital it is to have friendship and support from people who get it. Even knowing this, it’s hard to believe from that group 2 years ago, I did not remain cancer free but instead have cancer growing down my spine. I’m waiting on biopsy of liver to determine if it’s taken up residency there as well.
I won’t see an oncologist until this coming Tuesday to finally figure out what I’m dealing with exactly and hopefully find out hat my treatment plan will be. Unfortunately the “hurry up and wait” of cancer I should familiar to me. It’s everyone’s around me who doesn’t understands and peppers me with questions of why this isn’t moving faster already.
Anyways, I waned to introduce myself and look forward to getting to know you wonderful and brave ladies.
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Welcome Fightingirl -- You are right about the incredible support you need while going through this. You join us in our reluctant MBC sisterhood and we welcome you. You will find amazing women (and men) who are figuring this out day by day and are incredibly generous in sharing their insight and wisdom.
Warmest Wishes to You - Gumdoctor
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Just to close out my "pouring out my heart" session today on Who Am I Now?
While my previous posts were pretty negative and gloomy/doomy, I am talking with God alot, asking for His plan for me. I am practicing mindfulness (finishing a 2nd 8-week class next week), and focusing on some constructive things I can still do.
The first big thing on my positive, constructive horizon is planning an article for publication with a working title of "MBC in the Dental Patient." I notice dental topics have come up in this and other threads on a regular basis. I think there is a definite need for such an article at this time. I am the right kind of credible professional to write this very article at this time...
If you have any specific topics you would like me to cover in this article, you can PM me. The intended audience will be general dentists, dental hygienists and dental specialists of all kinds.
May God bless each of you and your families during this amazing holiday season (amazing mostly because each of us is still here to enjoy it)...
Gumdoctor
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Gumdoctor,
That is a terrible terrible situation. I’m very sorry you’re being subjected to this by an institution that it seems like you’ve given a lot to. I find dealing with large institutions/bureaucracy/organizations to be a very unique type of frustration, and I’ve never been impacted in the kind of profound way that you have by their ignorance and inefficiency. I don’t have much that I could give in the way of advice, just wanted to say screw the folks who left you in the lurch like this. I’d also agree with Cure-ious’ point that none of us know where advances might lead.
Fightingirl,
Sorry you have to be here but welcome and best of luck. There are a lot of very kind and insightful people here.0 -
thank you for the welcome. I know I can learn so much from all of you
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Gum doctor, I was also left undiagnosed .. for about a year and a half. Long enough for it to become stage 4 de novo. My sentiments were exactly "they killed me" ...and I DID sue them. And no, it didn't make me feel better and it hasn't made this torturous ride any less so. We are all entitled to those moments when we feel sorry for ourselves. We also have those moments when we are strong and push on. It's just a mixed bag really. You seem like a pretty strong woman, based on your history. Don't listen to that expiration date shit. How can they know that!? If you have a choice, I would say find a doc that doesn't give you an expiration date and isn't already planning your demise. Hope can be a great medicine. Dont let anyone take that away from you.
Sunset
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Gumdoctor, I'm sorry that you have had to face so much and that the organization that you have given so much to has failed you.
I agree with Sunset, don't believe that nonense about an expiration date! If I read your post correctly, you have bone mets. There are women on these sites that have had bone mets for ten years and are still doing well. My mets were diagnosed almost two years ago in my right lung and then it was found that I have extensive bone mets (spine, ribs, sternum, scapula, hip, femur - easier to say where I don't have bone mets really). Today I am doing well, feeling pretty great (had radiation to deal with some pain) and still working full time.
The work question is a tough one. I anticipate, given your employer, that your options are limited but I agree with Curious that for many of us, work is a huge part of us and really essential to our ongoing mental and physical well being. There is another thread that was recently started related to work which you might want to visit. While for some, disability is the best approach, others of us are hard wired for work and sitting at home is far from ideal. I would encourage you to continue to look at ways that you can shift to a different kind of work to keep yourself engaged and active. It sounds like the article idea is a great way to do that.
I think your anger is completely justified and I'm glad that you used this venue to let some of it out. But, as Curious notes, suing them would not make you feel better, nor would it change the situation. I just hope you won't let the anger consume you. Mindfulness is a wonderful way to relieve some of that pressure.
I wish I had better advice. It's so hard to deal with that kind of negligence. I think the only thing I can say is that there are no guarantees with this crappy disease. My original cancer was found relatively early (stage 2a), I had chemo, radiation and 8 years of hormone treatments and it still came back.
I hope you will come back more often. The folks on this site provide a pretty great shoulder when we need it.
Hugs,
Pat
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Gumdoctor, you certainly are right to be angry at the system and misdiagnosis. It is appalling. I also am inspired that you are looking at sharing your expertise with the dental community. The problem I face too is that I have gradually been able to do less and less. But to effect a change in your professional community is wonderful. My dentist is wonderful and has investigated some of the drugs I have been on over the years. Quite interested that at the end of chemo I needed gum surgery. .i go every 3 months now for a cleaning due to Xgeva. Anyway you know all this. I was a research librarian and know how difficult it is for anyone to keep up with vast quantities of information. Helping dentists with this will help many more service members as you have done throughout your career.
Many things I can’t do now and I took up knitting even though I wasn’t good at this. I have found it interesting and I give all my work to newborns in hospital. It’s something to keep me feeling productive...which at 70+ is important to me. If I could write I would do that but chemo brain has taken that too. All to say I hope you find some peace and lots of wonderful people here.
Welcome Fighting Girl. It’s two years with extensive bone Mets but I’m in a stable pattern now and hoping to stay that way. No expiration date.0 -
Gumdoctor,
I don't know if this would be helpful or not...no, you can't "sue" the government/military, but you can certainly make life miserable for them by contacting either 20/20 or 60 Minutes or one of the other news magazine shows. Your story needs to be told, and the public needs to be aware of their negligence and incompetence. What they have done is UNCONSCIONABLE, As you said, you're not the first person, and you definitely won't be the last person. I feel for you. This should never have happened.
As for MBC and dental problems, you might want to touch upon increased sensitivity to hot and cold, which a lot of us now have, and locking jaw issues. Zometa bone infusions can also exacerbate pre-existing gum conditions as well.
Wishing you better days ahead,
L
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good point, Lita! And apparently a spouse or dependent would be eligible to sue, which is just perverse. This was not anything related to her work or daily duties for the army. every article I've read on this today call it an outrage. Some press and public pushback could help. Apparently there is another case petitioning to be heard by the US Supreme Court this term, and even Scalia didn't like it:
The Supreme Court has received at least three petitions in the past decade to rethink Feres, mainly medical malpractice cases. Bills also have been introduced in Congress in the same period to clarify the law that set the Feres precedent back in 1950, the Federal Tort Claims Act.
Families, even those with active-duty members, can sue the government for negligence under the Federal Tort Claims Act. Troops themselves, however, cannot sue the government for personal injuries caused by the negligence of military members, including those providing medical care.
That's because the Supreme Court concluded in the 1950 Feres ruling that the government is not liable for injuries stemming from activity "incident to service."
But the doctrine has been used time and again to dismiss egregious errors by military physicians and contractors, ranging from an airman who died when an Air Force nurse improperly intubated him using a medical device designed for a child, to another airman whose aorta was punctured during routine surgery, causing the loss of both legs, to a Marine who died from melanoma after doctors failed to refer him for treatment and later misdiagnosed the identified cancer as as a birthmark.
Still, Feres remains the law of the land, even though circuit courts appear to be divided over the ruling.
The 9th Circuit Court in 1996 allowed the widow of a solider who died at Fort Lewis, Washington, to proceed with a wrongful death lawsuit. The soldier died while off-duty at a recreation area.
That decision followed earlier precedent by the same court that allowed the mother of a soldier killed by another service member to sue the government for wrongful death in 1985.
The 11th Circuit Court also has transmitted its approval for some military death and injury lawsuits to proceed.
In 1987, even Supreme Court Justice Antonin Scalia weighed in after the court upheld an appellate decision in a wrongful death case brought by the widow of a Coast Guard pilot.
"Feres was wrongly decided and heartily deserves the widespread, almost universal criticism it has received," Scalia wrote in a dissent of United States v. Johnson.
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Here is the pending case: In 2015, Walter Daniel filed a wrongful death lawsuit on behalf of his wife, Rebekah Daniel. In the lawsuit, Mr. Daniel alleges that the medical staff at Bremerton Naval Hospital were negligent in caring for his wife when she began experiencing significant post-partum hemorrhaging. The Western District Court of Washington dismissed the lawsuit citing the Feres Doctrine. Mr. Daniel appealed the decision to the Ninth Circuit Court of Appeals. The Ninth Circuit affirmed the District Court's ruling concluding that the "case was barred by the Feres Doctrine" because the injury was "incident to [her] service." (Daniels v. United States, 889 F.3d 978, 982 (2018).) The Court further stated "[i]f ever there were a case to carve out an exception to the Feres doctrine, this is it. But only the Supreme Court has the tools to do so." (Id.)
After a rehearing in front of the Ninth Circuit was denied, Mr. Daniel set out to determine if the Supreme Court would do just that – carve out an exception to the Feres Doctrine and allow him to pursue justice for his deceased wife. Mr. Daniel has filed a petition to have the Supreme Court of the United States review his wrongful death lawsuit. It remains to be seen if Supreme Court of the United States will grant the petition and reconsider this archaic judicial doctrine. You can follow the Supreme Court and read its opinions at https://www.supremecourt.gov/opinions/slipopinion/18.
PS Perhaps there is a group wanting to change Feres who would be lobbying Congress for a new law?
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Gumdoctor, your experience and perspective are so important. Would you have any interest in being connected to Elizabeth Yano who is a researcher I am familiar with from my work at UCLA. She is a lead on a project to create systems to care for women comprehensively through VA Services since it has been such a male-focused system for so long. You can’t check out more here to see if you’re interested in sharing your thoughts both as a provider, a woman service member, and a patient. https://www.cshiip.research.va.gov/About/Yano.asp
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Jensgotthis - Thank you for Dr Yano suggestion. Looks like she is doing amazing things. Not sure about connecting with her. All the negligence and malpractice issues happened and are still happening on the active duty side of the house. There is no crossover with VA. What are your thoughts on my connecting with her?
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Thank you to all who responded to my heart-pouring-out posts yesterday.
First - I needed to get that all out in the open. It is a great burden I carry. I now recognize I need help dealing with it.
Second - I am so grateful for this group of amazing people dealing with this horrible disease. Your support is helping me survive.
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Gums- you probably know but there is a facebook page dedicated to repealing Feres (link below- and Pat, 60minutes did do a story!), and maybe you will find strength joining some groups seeking to overturn this ancient rule- in the courts on in the legislatures! I wonder if anybody ever tried getting attention with a class action suit:
https://www.facebook.com/Repeal-The-Feres-Doctrine...
https://taskandpurpose.com/feres-doctrine-military...
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When I found out I had breast cancer to my bones for some years that was not caught on mammo, my parents were like "Lawsuit"!!! But when I thought about it all, a law suit was not going to make anyone smarter or give me my life back. I can't even feel sorry for myself because of some of us here being young with children. I still can't get over "why me?" When I have my crying spells about "why me?", it always includes "why them?"
The best I can do is keep busy and I did that by moving to be near my daughter (moving is hell!) and I finally found my 100 year old house.
What keeps me positive at this point is doing stuff I always wanted to do like live in a small town, and put my energy into my daughter, 3 grandkids, and a bunch of inlaws and family who are just great-the best. And it helps to keep my life the same as it was pre cancer discovery and continue on as if I just need more labs and take more pills.
And I will wholeheartedly tell any and everyone that mammos don't mean you're okay! It's hard to convince others that you can have a mammo every year for 5 years and never know you have a sneaky type of breast cancer. I mean how does one tell the mammo people that they need to look further than their mammo? I'll bet most will sortof look at you weird. Then my cxr and MRI showed nothing either. So how do you keep searching when you have no symptoms and have done your screenings faithfully?
If I can convince one person that they need to look further and they do...…...I have done good.
And I still struggle like all of us.
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Girls (welcome to the newbies) I have asked this question but can't see my inc for 2/12weeks and going crazy with thoughts but I have experienced sensitive teeth pain in lower gum:jaw and tingling and numbness to chin and lips. Absolutely terrified I may have Numb Chin syndrome which is extremely serious and means I only have weeks to live or complications to my jaw relating to ONJ disease . Has anyone else had all those symptoms or heard of anyone with them? I am terrified
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I had a numb jaw this past dec/jan - on the left side. It started within hours of a zomedron infusion, and stopped within days after starting chemo again - hormonal treatment had failed me. Bone scan showed no particular activity there, and dentist xray indicated an abscess, but I had no pain. Has been fine ever since. If you can't get to your oncologist, maybe try the dentist to rule out a dental problem?
thinking of you!
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hi delvzy,
I’m so sorry you’re going through this. I remember reading about it happening to other people in another thread a while ago. I think 🤔 this may be the thread? Hopefully you find some info that helps!!
https://community.breastcancer.org/forum/8/topics/863377?page=1#top
Hugs! Brenda
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My teeth/jaws have been sensitive for months. Had to give up ice cream
(.My dentist says it's chemo related and not to worry too much; it's not osteo necrosis of the jaw. . . at least not yet.
L
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lita, I have had same problem. Using sensidine tooth paste & warm water gargles. Seems to help a bit. Last night I mix hot apple pie w/ice cream, tasted oh so good
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hello all, just read thru this thread for about 30 min. Prior to reading here I was in tears. My muscles ache, I have been waking w/aheadache since starting a new chemo drug & I struggle w/breathing issues & dizziness upon standing. Some days I am ready to call it quits Esp'ly after I read we have lost long time sisters to this dam disease.
Then I see new names, new questions, & scared sisters. Maybe God isn't ready for me yet. I can still totally relate to miss Dx , bone mets missed by over 6 months , getting a call from my RO saying my hip will fx just walking around if I do not come see him tomorrow to start Rx.
Last year, summer 2017, I was told I have a tumor growing off my skull, pushing my eyeball outwardly. After a week-end stay in hospital, many scans & consults I decided to go w/my long term dr friend for radiation. I was so excited to get treatment going that I briskly walked thru my kitchen to my laundry room when I slipped in water on the tile & did a perfect split . My 5 adult children came running & I now comically remember their words; son #5 calls son #1, new pediatrician, asking what we should do, meanwhile I refuse ambulance. Only daughter, 30 yrs old runs to get pain meds & forces me to take 2. Autistic son just paces back & forth. Middle son takes in situation & blurts out. Can we get some pants on her? I was wearing tee shirt & boxer briefs, he was concerned what neighbors would think if mom went out side half dressed. Turned out they got a skirt on me, after laying on floor & then couch for half an hour , Middle son & daughter drove me to ER, who was waiting for us. X -rays showed I fx my pelvis, which was a relief, really thought I broke my hip. Tha main point i want to make here is that I was in a lot of pain after my fall, I needed a w/c, crutches at times & then a cane. Somehow I over came. I recently took a wonderful trip toNew York to see Statue of Liberty & many other 911 memorial sites.
So much more to share. #1, most important, no expiration dates 😊. Sue.
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Sue that's a wonderful encouraging story which I needed to hear. I have got myself convinced I have Numb Chin syndrome which gives a terrible prognosis and I was ready to hang up my boots. One month ago I was realitivy ok working part time and enjoying life as much as I can. Now I am in on my 2nd chemo tablet I have aches all over my body, liver enzymes are up so having an ultrasound and I just lie in bed half the day exhausted and depressed. I have 2 weeks before seeing my Onc and have to put up with the stress of sensitivity in teeth pain in left jaw that comes and goes and tingly Numb Chin and lower lips. Sorry for the pity party
Jude
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Delvzy, I forgot to mention that I get numbness on the left side of my face, especially around the mouth and nose, that comes and goes. VERY annoying and worrisome.
I attribute it to a combination of the 20+ brain tumors I have in my head. They have already done Whole Brain Radiation (last year), and they can't do it again or I'll have major cognitive deficits and possibly other damage, so I just have to live with it.
My back is really hurting a lot more now and the SUVs from the last PET (2 wks ago) show an increase in uptake values. Sadly, I can't take a lot of pain meds/analgesics because my current chemo has given me major dyspepsia / GERD. So it's a trade-off, do I live w/the back pain and no stomach irritation, or do I take the pain meds and deal w/a crappy stomach ALL DAY long?
I'm having a Zometa bone infusion in a few weeks, and that does help for a while. . .sometimes
(. I walk w/a cane and walker, and use a lot of CBD balm and some CBD tincture to help w/the pain, but it only does so much.My prayers are with you,
L
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Lita,
Have you thought of a TENS unit for the back pain?
In addition to the TENS, you can use topical lidocaine patches. You wouldn't think they'd penetrate the skin enough to make a difference, but they do!
You are the CBD Queen, and I thank you for that. It's made a big difference. And there's always alternating hot packs and cold packs. The nurses at my practice are on me to watch skin integrity, but I've only damaged myself with heat, never with cold. And, I've learned better now. Be careful of heated rice bags, as they can get a hot core to them that you don't really notice until you wake up with a big old blister on your mastectomy scar.
As for the oral medications, you can't take them on an empty stomach. At least, I can't. If I can't bear the thought of food, I take them with a Tums. I worried that the calcium would bind the opiates and reduce their effectiveness, but have not found it to be so.
There is also a pain meds pump. It's a medium procedure, compared to whipping some pills down, but the one person I know that uses it has said it is life changing. No upset tummy, no roller coaster of pain relief. Once a month, she gets a fill up.
And now for the "Woooo" portion of the event. I am working on bio-feedback and visualization for pain control. It is hard, as I am not good at introspection. I know we can't use deep pressure, like massage, but I have a friend who very much wants me to have a hands on session with a Reiki practitioner. Has anyone here done that?
I can't believe how much you accomplish with the back pain. Cooking. Crafts. I'm chuffed if I manage to get myself clean on a regular basis.
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Jennifer - “I'm chuffed if I manage to get myself clean on a regular basis.“ - me, too!! I was absolutely unable to function. Spent the past 2 wks in wheelchair... it was HARD! I started rads a couple wks ago and it has started to work. I feel like a brand new person!
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Hey Princess! If it makes you feel any better, there is some literature supporting the idea that at least some significant fraction of cancers have already micrometastasized (sent out metastatic cells) at a very early stage of growth, and that is why you can get mets even from a small tumor, or in some cases where the primary is so small they can't even see it yet in imaging. In general getting the tumor out early is best, but as you say, it is not necessarily protective, each case is unique. The micromets are not seen in scans, and they can sit next to the organ they want to invade for years or even decades, and as they sit, they are mutating trying to find whatever genetic mutations will allow those cells to grow on liver or lung or bone, etc. The don't show up until they have found a way to grow on that tissue, which is why different mets can appear at different times (bone mets cannot grow on liver, etc)
For all- Here is an onclive video talking about Alpelisib- main points being that it is exclusively for Pi3K mutant cancers, and that most cancers do not start out with a PI3K mutation, but it commonly is found after progression on I/F, because the cancer mutated Pi3K in order to get around the Femara or Faslodex. So as they say, having this drug will make the field have to test for that mutation in biopsy. They get 11 months average progression-free survival when adding Alpelisib to Faslodex, if you have the mutation (remember,that means half get longer than 11 months...)
https://www.onclive.com/web-exclusives/lead-resear...
What would be nice would be to have a CDK4,6 inhibitor included in that, like Ibrance or Abemaciclib, and even nicer is to put in some immunotherapy! CDK4,6 inhibitors increase expression of PDL1 and tend to make cold cancers become sensitive to immunotherapy in pre-clinical studies, but no clinical data as yet, not sure how many trials are even testing this.
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Thank u Lita ithought I would find more women with numbness on one side of the lips teeth chin but u are one of the few that have mentioned it
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