Second Opinion?: In an earlier post I... - Advanced Prostate...

Advanced Prostate Cancer

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Second Opinion?

TommyCarz22 profile image
54 Replies

In an earlier post I mentioned a vertebral fracture of my thoracic spine that was discovered only because my General Practitioner ordered X-rays because I'd been complaining of back pain for a very long time. I'd told my Onco-team as well. They shrugged it off every time I mentioned it saying, your psa is steady, you're on xgeva (maintenance dose every 3 months) so we don't suspect it's your mets.

After the X-rays revealed the fracture, my GP ordered a dexa scan, where Osteopenia was discovered, as well as being right on the cusp of osteoporosis , I informed my Oncology Team, they determined(without images, only a written report) the fracture was "Osteoporotic", and NOT cancer related.

So last week I had a scheduled Oncology appointment for my injections (Eligard and Xgeva) and during my visit I asked if there was anything we can do to help strengthen my bones. The answer was, No....your psa is steady, and you're already doing all you can with the calcium, d3, magnesium, and Xgeva. Needless to say, I was disappointed.

My question is, are they too caught up in "Standard of Care" and is that why they didn't even offer the e-2 patch, or even talk about it for that matter? I asked why there wasn't a dexa prformed before I started on the ADT and she said, that wouldn't matter, you've probably been osteopenic well before your treatment began. Of course, I disagree. Should I be shopping for a new cancer doc?, not just for answers I want to hear, but for a second opinion.

54 Replies
Seasid profile image
Seasid

I had a sciatica nerve pain before I was diagnosed with 15 bone mets in my spine and the pain disappeared 7 days after starting Degarelix injections.My MO still said that the sciatica nerve pain wasn't cancer related although his registra said to him that my sciatica disappeared after starting Degarelix and that means the pain was cancer related, still my MO was saying that it wasn't.

I believe that if you ever had cancer related pain you are out from BAT, at least Sartor would not take you for doing BAT.

I don't know exactly your situation but you see it can happen not just with you that they don't recognize cancer related events.

What I know now for myself is that I will not do BAT.

You should think about your situation and conclude for yourself what does it mean for you. We all should think through everything and say to them.

I had a spot on my lung and they faund it on the CT. I started taking antibiotics and the lung nodule dissolved after 10 days. Therefore their was no reason for a biopsy. The doctors where angry why did I start taking antibiotics!

Oh well, it is because I am trying to think with my own head. I really didn't want a lung biopsy performed on me.

cesces profile image
cesces

They are probably right.

But that is lowest common denominator medicine.

You should get several second opinions.

You should never trust the medical system with your health.

Seasid profile image
Seasid in reply to cesces

I totally agree with you.

groundhogy profile image
groundhogy in reply to cesces

”You should never trust the medical system with your health.”

An indication of just how bad they are at their jobs...

cesces profile image
cesces in reply to groundhogy

I think it's more that they define their jobs differently than dp patients like us.

And the customers they serve, are not us... it is the "payors". It is the insurance companies, health networks etc who pay them their money.

You and I, we are just basically a long for the ride.

Seasid profile image
Seasid in reply to cesces

You made me laugh cesces. Very much true. We are only basically alonge for the ride. LoL

groundhogy profile image
groundhogy in reply to cesces

”And the customers they serve, are not us... it is the "payors".”

But.. we are the customer. The money actually comes from us.

And you can ask any 5 year old.. What does a doctor do? Oh, doctors save peoples lives! will be the answer.

Doctors enjoy gigantic paychecks compared to the little people. I can’t think of any other occupation where you get such positive publicity. In fact one of the problems I see, is that there seems to be no negative feedback, only positive feedback.

cesanon profile image
cesanon in reply to groundhogy

LOL

Yes we fund it.

But if you notice, it is not your decision how it is spent.

The actual decisions are made by licensed health care professions. Who in turn are closely supervised by insurance companies, claims processors and what not.

That generates the standard of care.

And the standard of care controls the care of even self pay patients.

To the extent you might think you control the standard of care delivered to you.... well that is only an illusion.

Alturia profile image
Alturia

My MO advised me to get a dexa scan when he started me on Eligard and abiraterone.

mrscruffy profile image
mrscruffy in reply to Alturia

I have a Dex scan every two years, last one showed the beginnings of Osteopenia. Getting a shot for that next visit

ajok profile image
ajok in reply to Alturia

I’ve been getting Prolia injections every six months for a few years now, trying to help with the weakened bones. How well does it work?

Two months ago I fell against the frame of our bed. Only broke 3 ribs.

Without the Prolia, it might have been more? I have no idea. I just do what they tell me to do and cross my fingers.

Seasid profile image
Seasid in reply to ajok

Did your bone density improved after prolia?

Did you have a recent dexa scan confirming that your bone density really improved after receiving Prolia?

Seasid profile image
Seasid

Could you see an endocrinologist? I am osteoporotic now and they are sending me to the endocrinologist.

Derf4223 profile image
Derf4223 in reply to Seasid

I'd ask for Prolia or Xgeva if I were you. Modify diet and supplements now to provide calcium (1200 mg/day) and enabling vitamins D3 (4000 IU/day) and K2 (MK-4 45 mg/day or MK-7 100 mcg/day. Initiate or modify exercise to provide whatever level of resistance training you can stand.

TommyCarz22 profile image
TommyCarz22 in reply to Derf4223

been doing all that since I started on adt. Xgeva nearly 3 years now

Derf4223 profile image
Derf4223 in reply to TommyCarz22

Tommy, I was addressing Seasid but its OK for you to weigh in. Did you get your T bone density numbers at the time you started ADT? Are you going through your MO for bone density scans? My MO is responsible for my Prolia injection plan and says I can get a DEXA re-scan 2 years from my last one. She says bone density should not change fast enough to call for more frequent DEXA scans.

I didn't get a DEXA scan until after 4 months on ADT. It showed osteopenia (T -1.3 at all measured points.) At that point my MO put me on Prolia, low dose for now. Your GP PCP might not be aware that ADT drugs accelerate bone loss, and if they did know that they should have referred you to your MO. GL with the beast and its side-effect cousins.

TommyCarz22 profile image
TommyCarz22 in reply to Derf4223

I never got a dexa prior to starting treatment, I asked about that last week at my oncology appointment, she said it's irrelevant, and I probably had these issues prio to the ADT treatment. I'm not sure how to read the results exactly, and nobody volunteered to go over them with me. I

test results (text)
Alturia profile image
Alturia in reply to TommyCarz22

Broadly, here’s what your T-scores mean:

Above -1 = Your bone density is considered normal

Between -1 and -2.5 = Your score is a sign of osteopenia, a condition in which bone density is below normal and may lead to osteoporosis

Below -2.5 = Your bone density indicates you have osteoporosis

For more info see algaecal.com/osteoporosis-t...

Derf4223 profile image
Derf4223 in reply to TommyCarz22

Tommy, Your femoral neck T # (-2.3) is very close to the beginning of osteoporosis (-2.5).

I've gone through a lot of You Tube videos by doctors from credible organizations, and the general thing about bone loss is that starting circa age 50 it is normal to lose bone at a rate that results in fractures in one's 80's. ADT and no bone loss medication accelerates the rate of loss such that osteoporosis is likely to start in one's mid-70's. You need to study hard to talk with your MO intelligently -- be able to cite Trials and drugs by their full generic names. With ADT and bone loss medicine etc* you should get a decent shot at making it to your late 80's before osteoporosis fracturing is a concern. By then (like PCa) if we last that long there will be more options.

Note *etc = the right exercises at the right intensity levels daily, calcium 1200 mg/day, vitamin D3 4000 IU/day (min), and vitamin K2 (buy it at Walgreens OTC) 100 mcg/day.

TommyCarz22 profile image
TommyCarz22 in reply to Derf4223

Thanks, I don't have k2, but I do adhere to your other recommendations. I'll pick up the k2 at next drugstore visit

Seasid profile image
Seasid in reply to Derf4223

I understand what you are saying, but our patients advocate convinced me that if my blood calcium levels are in a normal range than I don't need supplemental calcium. In fact calcium supplements at that level what you are suggesting could be potentially be toxic.

If you are on bone medications than yes as you want to avoid low blood levels of calcium as a result of bone medication use.

What do you think? Are we just simply facing anti supplement lobby? Therefore just take 1200 mg of supplemental calcium irrespective of your calcium blood levels?

Derf4223 profile image
Derf4223 in reply to Seasid

I am not a doctor, but my urologist said I should take 1200 mg/day Calcium when he started me on Firmagon. Is your advocate a doctor? 1200 mg/day is the highest recommended dose for ages 70 and above. As for toxicity -- wut? Take vitamins D3 and K2 along with the calcium. Or not since its your body.

Seasid profile image
Seasid in reply to Derf4223

I don't know why would I take supplements if my blood calcium levels are in a normal range? I am not a fan making supplement companies ritch. I am trying not to take supplements. I rather buy food for that money and eat healthy.

ctflatlander profile image
ctflatlander in reply to Derf4223

I've been on Xgeva and had to stop due to ONJ. The jawbone has healed but concerned about my bone density since stopping. The last test 4/22 showed femoral neck and forearm in the osteopenia range, all others are normal. I'm working hard on resistance training but would like another bone density in a couple months to see results from training and supplements. Medicare will only pay for the test every 2 years. Out of pocket cost I'm told is $1600. Any thoughts?

Seasid profile image
Seasid in reply to Derf4223

We are going to the endocrinologist here as they believe that my is related to my endocrine system.

Seasid profile image
Seasid in reply to Seasid

They gave me a referral.

Poowater profile image
Poowater

You need Denusomab for life. Change your oncologist.

Poowater profile image
Poowater

You need Denusomab for life.

Metungboy profile image
Metungboy

no. Xgeva is the same medication as Prolia but in much much higher doses. You are therefore having maximum medical osteoporosis treatment.

If you have been on ADT for a while osteoporosis is expected. Dexa scans are of no value in your ( or my) situation. You know you have osteoporosis so why have more tests to tell you what you know. Xgeva will limit the progression and maybe reverse it in some sites.It is worth doing gradually increasing very heavy weights but you need to back off if there is pain

TWTJr profile image
TWTJr

Demand that your MO send you for a consultation with an interventional radiologist for consideration of a vertbroplasty or kyphoplasty. Prior to retiring, I performed thousands of this procedure, and it is most useful for alleviating pain due to compression or pathologic fractures related to bone destruction. Suggest you Google vertbroplasty to learn more about this procedure.

Seasid profile image
Seasid in reply to TWTJr

Good to know. Thanks

Si52 profile image
Si52

There are some suggestions here to take calcium supplement. I would advise caution before you do that. My oncologist prescribed calcium supplement to me because my blood calcium level on that day was very slightly below the normal range. In six months my aortic valve stenosis jumped from mild to moderate to severe. I decided on my own to stop taking it. My blood calcium level has remained in the normal range even without taking the supplement. Unfortunately, it looks my aortic valve has been affected permanently.

Seasid profile image
Seasid in reply to Si52

Thanks for your contribution.

maley2711 profile image
maley2711

just read a report that high % of men diagnosed with PCa ARE osteopenic at initial PCa diagnosis....so the explanation you were given has some validity evidently . My nephew in 40s is osteopenic, as am I in 70s. Sounds like you are being given standard advice.treatment for osteopenia/osteoporosia. You raise an intersting point.....do the estroen patches help fight the tendency toward lower bone density with ADT?

Emmett50 profile image
Emmett50

My husband had a bone scan 5years ago before starting ADT. His oncologist told him (then 65) that he likely would get osteopenia at best. She ordered a second bone scan at 2 years and that showed osteopenia. About 2.5 years later, his PSA was rising and he had a PSMA scan and a bone scan.He has a PCa recurrence and osteoporosis. At the time, Paul was hoping to have dental implants of his top 2 front teeth. That implant would have delayed PCa treatment by 9-12 months. He struggled for a while but I finally convinced him that he would be better off toothless than allowing the cancer to spread further. His confirmed recurrence was in November. He got the Reclast infusion the first week of December. He plans to see if some sort of bridge or flipper can work for him as those two teeth are gradually slipping down from a long ago injury. He’s overwhelmed right now by recurrence and high stress levels at his job. He’ll deal with the dental issue in a few months or when the teeth fall out.

So, short recap is that MO ordered a bone scan while testing for PCa.That was his baseline. In addition, she ordered a 2nd scan 2 years later. When his quarterly PSA tests started elevating, the MO ordered another bone scan. And boy, were we grateful for her diligence. His MO and RO are at a Cancer Center of Excellence- I think that’s the designation. It’s part of major research university and medical school.

Derf4223 profile image
Derf4223 in reply to Emmett50

I can only give you my posture. I went modified Vegan (no dairy, no red meat, fish and chicken occasionally) early on in my PCa treatment arc. So I pay close attention to getting minerals and vitamins ordinarily found in adequate quantities in foods I no longer eat. EG calcium, B12, K2, and so on. I also exercise a lot -- daily -- light resistance training, aerobics, walking and stair stepping. I am osteopenic and on Prolia. The whole lot is a package of measures meant to work together. And no none of my PCa team recommended much of this except Calcium, vitamin D, and "staying active."

London441 profile image
London441

You say you’ve been ‘doing all of that’ since starting ADT, including the exercise. What are your habits? Weight training yields superior results to the bone strengthening drugs, supplements, all of it.

Femoral neck osteopenia is the most common, if you can keep that at bay the rest is manageable. But you do need to work the legs diligently.

ctflatlander profile image
ctflatlander in reply to London441

What is the best weight training for femoral neck? Mine is at -1.2Stationary bike? I did 760 miles on gravel bike last year. Thank you.

London441 profile image
London441 in reply to ctflatlander

Squats, deadlifts, lunges, leg presses, leg extensions. Progressive resistance. Biking is great, but we ‘olds’ should definitely be lifting too, ADT or not.

binati profile image
binati

It is well known that once you are on ADT the bones begin to lose calcium owing to reduced Estrogen. Normally a baseline Dexa scan is done before ADT and then every year. Some medication like Ibandronic Acid or Prolia etc are given to sustain bone health. I have been on Ibandronic Acid for 3 years of the past 4 years on ADT or low testosterone. I am not taking any supplemental Calcium but there is a yearly check on Ca+ in blood along with Dexa scan.

Seasid profile image
Seasid in reply to binati

What is Ca+ ? Which blood test is it? Is it different than the blood calcium levels in the blood?

binati profile image
binati in reply to Seasid

Yes it is calcium in the blood.

Seasid profile image
Seasid in reply to binati

I am getting that test every month now and it is mornings always in a normal range at the upper limit. I sometimes think that would be good to test it later during the day as maybe it could be at the upper level because of my sleep apnea.

My CO2 levels go up when I stop breathing and my blood goes acidic. My body release Ca from my bones to neutralize acid of the blood and eventually my kidneys remove the excessive Ca from my blood and I develop osteoporosis.

binati profile image
binati in reply to Seasid

Medically - In most cases, the cause of osteoporosis in men is unknown. However, there's a link to the male hormone testosterone, which helps keep the bones healthy.

Men continue producing testosterone into old age, but the risk of osteoporosis is increased in men with low levels of testosterone.

TommyCarz22 profile image
TommyCarz22 in reply to binati

so 3-1/2 years of Near Zero Testosterone could contribute to the weakening of the bones? Great, as it also contributed to the obesity that I have now and have Never had before. In fact, I was always about 10 pounds under weight. Now I'm 50 pounds overweight, AND I have a weakened skeletal system to support that extra weight. It would have been nice to know this BEFORE treatment . Is this why most men die of "something else", like Heart disease, diabetes, or stroke?

binati profile image
binati in reply to TommyCarz22

Everyone has their own story about weight loss. Mostly it is our bodies are unique and so are our eating habits. I have had 12 years of pre-diabetes which I controlled initially by exercise and reducing my food intake as I age. I am currently 77 yrs. However, I embarked on a low carb diet and this has helped tremendously to keep blood glucose under control - target is HbA1C of 5.5 or below. It has additionally kept my weight under check especially on the stomach. A combination of exercise and diet will help. Work on a diet you can continue with to be able to sustain the effort over a longer period of time. No testosterone can also affect the heart adversely so one has to have periodic checks. Before I went on Darolutamide I had a Colour Doppler for the Heart. So far with 3.5 years of low T it is still okay - touchwood.

dhccpa profile image
dhccpa

Hard to say, but always be prepared to cut one loose and drop a line in the water for a different one. They do things differently.

MateoBeach profile image
MateoBeach

In my opinion, Yes. That inattentive approach and passing off of careful evaluation and aggressive supportive care is not acceptable. I would look for a different MO and team.

On your part, you can be more proactive in telling what you want. Ask for an MRI to confirm no cancer at site of fracture. And PSMA scan of PSA >0.20, and an F18 NaF PET otherwise. And insist on an estradiol patch up to 0.10 mg/24hr twice weekly. Provide PATCH study summary showing no increase in CVD risk. We must always be proactive and our own best advocates.

MateoBeach profile image
MateoBeach in reply to MateoBeach

actually, Flucyclovine PET (Axumen) May be the superior scan for bone evaluation in APC.

pubmed.ncbi.nlm.nih.gov/313...

Seasid profile image
Seasid in reply to MateoBeach

Thanks. good point

dmt1121 profile image
dmt1121

My immediate reaction is you should talk to a good orthopedist to get an opinion outside of your current care team. Explain your history and what your doctors are saying and see if there is another approach orthopedically.

Good luck.

maggiedrum profile image
maggiedrum

Before I started (and stopped) ADT, I had decided to take a calcium supplement daily, one 300mg capsule in the morning and one at night. Calcium citrate which is superior to other salts of calcium as it is absorbed better by your system. Your system can only absorb a certain amount of calcium in one dose so it is better to take it twice a day or you will just be flushing down much of it if. It is possible to take too much calcium and I determined through layman research that 600mg was optimal for me. I have a history of back pain and x-rays have repeatedly confirmed that I have ankylosis spondylosis which is a type of arthritis that causes the vertebrae to self fuse. My entire spine is fused and I have recurrent back pain which comes and goes and is sometimes debilitating. The back specialist said there isn't a cure or palliative treatment other than pain meds if it gets too bad. I've been told that before.

I know that calcium absorption is enhanced with vitamin D (D3). However, you normally will get all you need in your diet and sunshine. It is toxic at what most would think is a moderate supplement. It is advertised by all the vitamin suppliers as essential. It actually is harmful at the "recommended" dosage provided by the labels. I stopped taking it a couple of years ago.

My MO immediately had me get another full body bone scan when I told him I had bad pain in my pelvic area, which is a common area for bone mets. It was negative. I have mets spread out in multiple lymph nodes and he says it is only a matter of time before I get mets in my bones. I am a weirdo so far as I can't tolerate any of the "normal" SOC therapies. We monitor my PSA every three months and it is steadily rising. It is what it is.

I am saying all this just to advise anyone who wants to self medicate with Ca and/or D3 that you could be doing more harm than good, and if you don't need it, you are just adding to the profits of the drug supplement companies. They are very aggressive marketers and aided by Costco and others who also profit from it. That is not to say it may not be necessary and helpful for some of you. From what I have read in this forum and other places, many are taking something they don't need or taking too much or just wasting their money.

My MO always orders a full metabolic panel, which gives my Ca level, every three months in addition to a CBC and PSA test. My Ca last month was 9.8 which is in the normal range. Your body uses Ca for much more than just as a structural metal for bones. The level in your blood is important for a ton of other things. Too little is definitely not a good thing either. I encourage every one to listen to your PCP and MO regarding what Ca you need. And to get the Dexa and bone scans as needed. I am a good example of having a prior bone problem that has nothing to do with my PCa therapy or prognosis. If I get bone mets it will be important to be more careful with my Ca intake and blood levels.

Seasid profile image
Seasid in reply to maggiedrum

"If I get bone mets it will be important to be more careful with my Ca intake and blood levels"

I didn't understand what you mean with this? Could you better explain?

maggiedrum profile image
maggiedrum

I could be wrong about this but I have always understood that the treatment of bone mets often results in destruction of some bone tissue therefore necessitating a way to rebuild as much of the bone tissue as possible. I would think that the body would need additional Ca (circulating in the blood) to provide a basic building block for bone regeneration. If so it would be helpful to keep track of actual circulating Ca, with additional Ca intake to provide this. Too much Ca can cause other tissue problems it would be helpful to know how much is available to do the job without overdoing it. But I don't claim to be a medical or tissue expert so would defer to those more expert, competent doctors.

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