My Mom, initially had a tremendous amount of back pain; she went to urgent care, and our family physician (who is now retired). The family physician ordered an MRI and back scan, then proceeded to tell us she has cancer in her back. Then we went to an Oncologist, Neurological Surgeon, and Radiation Specialist. The Oncologist ordered a needle biopsy, which was found inconclusive and we were told they could not find anything, but that it has to be cancer. The Neurological Surgeon refuses to call it cancer with out proof. The Oncologist wants a surgical biopsy and the Surgeon stated that he was going to do a surgical biopsy and fix her back because she has decompression fractures, scoliosis, and degenerative discs; he feels this may be what is causing the problems. The Oncologist ordered steroids to reduce the inflammation of the affected areas of "cancer." Mom has not been able to sleep in a bed for 3 months because she cannot lay down. Then her legs/ankles were swelling to the point of weeping fluid and creating sores. We told several doctors that answered, "It will stop after surgery." On the day of surgery, Mom's white blood count was up, the surgeon would not do surgery because of signs of infection, admitted her to the hospital, where she went into A-Fib to find out her lungs were full of blood clots. Now she is on blood thinners, steroid, heart medication, water pill, pain pills, an antibiotic, and wears a complete back brace; on top of it she is in a rehab facility because of her swollen legs and back pain, they are trying to get her back to where she was at, before the day of surgery so she can go home. We just saw her surgeon's associates on Friday and they told her that they will be waiting until the spring to do her back surgery, I asked about the biopsy, and they said maybe in January; they need to be sure that the blood clots are gone. Meanwhile, it seems like her health is deteriorating on a daily basis. We don't know where to go from here: if it is Cancer would they really wait for 2-3 more months (this has been going on since June); do I need to call her primary physician to be the main point of contact; we would just like some guidance or answers. I believe there are too many hands in the pot and this woman has never had any medical issues in the past, the only thing she was taking was a multi-vitamin. I am completely frustrated because it tears me apart to watch her suffer.
You poor kid, and your poor mother!
Yes. Book a double appointment with her PCP. Take all your notes. Make him sit down and CONCENTRATE.
What do we now think is going on? (By the way, did you ever get a rationale for why cancer was suspected? If the radiologist couldn't see it was it through blood markers or something?)
Please can we have a plan focused on stabilising mother, and please can we wind down any treatments for as yet unconfirmed conditions.
Any further opinions from specialists to be collated by the PCP and any treatments to be co-ordinated by him.
This assumes that you haven't lost all confidence in this PCP. If your mother has been his patient forever and never needed anything more exciting than a multivitamin, though, I'd give him a second chance.
Gosh you must want to bang their silly heads together. I really hope that if you only do that metaphorically they'll start pulling in the same direction. I'm so sorry your poor mother has been through this experience, and that you're able to turn her situation around.
This is just my personal opinion, and not necessarily a disagreement or challenge to anyone else's advice. But we've found that PCPs are more like the coordinators and over the years we've come to rely on the specialists.
Out of 3 PCPs we've consulted for my father, not one of them shared our philosophy of natural remedies first and meds second. One was so irresponsible he even caused my father to hemorrhage and end up in the hospital.
We've also gradually weeded out specialists who aren't consistent with our philosophies, i.e., the patting hands doctors who indicate that we don't need to be aware of all the issues I've raised.
It's much easier now that we're "all on the same page" about meds and treatment.
With your mother's back problems, it's understandable that there would be back pain.
But it seems as if the oncologist and neurologist aren't necessarily in agreement. What we've done in the past is ask the doctor in whom we had already developed confidence who he/she would recommend for another practice area (generally to replace someone who's wasn't on board with our philosophies). Gradually we were able to put together a team of doctors with whom we're comfortable.
I don't understand this at all:
"The Oncologist ordered a needle biopsy, which was found inconclusive and we were told they could not find anything, but that it has to be cancer. "
Why would it HAVE to be cancer, where there are significant back issues?
"The Oncologist ordered steroids to reduce the inflammation of the affected areas of "cancer." I'm not a medical person, but I wonder how someone could conclude that cancer which can't be succinctly diagnosed can cause inflammation, especially with the back issues.
I'm still concerned about the weeping fluid. Where is this present? My father experienced that when he was in CHF and had developed other co-morbidities; fluid was weeping from his arms. My aunt died of lymphedema complications in her legs, which became infected, sepsis resulted and she was gone in one day.
You will have a little time now as no one will attempt any invasive studies until her bleeding/coagulation status stabilizes.
I wound also round up all the medical records including test results so you can bring them with you to the PCP as often they are not sent the reports and if you have everything right there it will be much easier. For this you will need a medical records release consent signed by your mother; make a few of these up on your computer (standard form) where you can write in the specialist’s name and a kind for dates of service.
Take a deep breath and be strong for her. There is a lot going on right now . Hopefully her providers can keep her pain free and comfortable. Sorry this has happened and wishing you the best.
The pain in her back is very explainable by the crushed discs and scoliosis. She probably also has osteoporosis has that been checked?
The meds she is on all sound reasonable given her condition. She obviously has CHF and has probably had Afib for a very long time. Many elders have it and don't notice it when it is mild.
Blood clots in the lungs just seem to happen, were there also some in her legs?
No surgeon will touch her till the clots have cleared up.
Has a cardiologist seen her and if so what is his opinion?
The Afib needs to be stabilized before an anesthesiologist will agree to put her under. They like patients to be on the drugs for six months before any intervention. If she has been given Amiodarone for the Afib it has a lot of nasty side effects so that could be part of the deterioration you are seeing.
There would be no harm in having further investigations like MRIs, CT scans etc but nothing invasive.
How do I know all this? Because I am a retired RN and have been through a similar situation. I had a clot in my heart and went into CHF. My legs did not weep but they were incredibly swollen and painful. I was given IV Lasiz and had a catheter to deal with the excess peeing. I also had fluid in my lungs which they drained several times which of course made me breathless They were also looking for cancer to explain all my problems.
Another thought does come to mind though. She is an older woman and would have been exposed to TB so has she been checked for that?
You say she can't lie down in bed,but have you tried a recliner? That is the only way i can sleep or sit comfortably.
I won't tell you everything is going to be alright because it may not be so spend as much quality time as possible with Mom and have all the conversations with her you have been waiting to have.
The Afib can be treated, the CHF controlled and the blood clots resolved although the need for blood thinners will continue for the rest of her life The back problems are unlikely to go away.
Wait on the cancer till someone can give you a definite diagnosis then you can cross that bridge if you have to. Love her, encourage her, and give her all the help you can. Nothing wrong with you having a good cry together It is a terrible situation but she has to be a strong woman if the blood clots did not kill her
Sadly, a lot of doctors - just like everyone else - are just out for the $$.
Ok, got that out of the way. I can tell you from experience that the less your mother does, the more back pain she will have - because soon everything she does will hurt. Been there, done that myself when I was 28. BTW, I think you failed to mention Mom's age? At a certain point, I don't believe in over diagnosing. My DH at 96, I wouldn't even consider putting him through surgery or chemo again.
The swelling and weeping sounds like they might have her on saline drip? My DH went through that and it almost killed him. They wanted to send him to "swing bed" but I took him home and he lived instead of dying. At 96, it's been a rough 2 years for us but he's doing so much better. And, he has Lymphedema - it took us 2 years to get that properly diagnosed and the 'scabby-crust' on his foot was as big as your fist and would have encompassed more of his leg had I not been tending it to the best of my ability. Even his stints in hospital, I was the one left to tend to his foot. Sad but true. No one knew what it was and the few who dared to diagnose all thought gangrene.
I will share any and all particulars if you're interested - just click on my name and leave me a message.
But to answer your question - yes, you can have too many doctors. "Too many cooks will spoil the broth" comes to mind.
Whatever you decide, be practical and realistic about her overall health status now and what will be her outcome; once something is "fixed", something else will break. It's very, very difficult to see a loved one decline because their mind and bodies are not the same as they were forty-plus years ago.
You should have a backup plan in place now, such as Hospice. The longer your loved one is in a rehab facility, the greater the risk of contracting a respiratory illness from other patients who have a compromised immune system. It may get to the point that her health will deteriorate so fast that there is no other option than Hospice. For some on the decline, one health issue sets off of a rollercoaster of other health issues and it's just God/Nature's Way/ The Universe saying it's time to come home. I feel for you...it's not easy to make the tough decisions and no matter how old we are - we always want our parents with us.
You have to remember: Doctors and facilities are willing to treat this or that - it's their job and it's their money, so to speak, and I've learned painfully that they can give false hope. I suggest you have an upfront talk with the doctor at the rehab facility about the status of your mother because if she's on the decline - the serious decline - then you should consider taking her home on Hospice. Listen to your gut, not what you want to hear from the healthcare providers...We all want to hear the good from the providers and not acknowledge the bad.
Also, Google doctors in your area who treat homebound seniors. This is the trend now in geriatric medicine. My mother's doctor and nurse (who has a Ph.D in nursing) treat only homebound seniors and take Medicare. They order in-home: x-rays, labs, rehab. If you can get your mother treated in-home, then she'll be much more comfortable than in a facility.