Hello Everyone, Today did not feel like a good situation. They cannot do an image-guided biopsy. They have to go in blind and they are not sure they will get a proper biopsy or if they will miss where it is at. They basically wanted him to wait until it grows larger and we were not comfortable with that they said it was our decision. We asked them to call dr. Myers in Virginia they did and by the time we got home they had called and left a message and said dr. Myers says to move forward with the biopsy. They did not want to put LG through this not knowing if they could get a proper biopsy but our fear is that if it grew this large in 6 months and if we wait it may be too late to kick its butt. Is this a normal situation that the humeral head and close and or down in the bone marrow cannot be image-guided? Anyone with any experience here, fiance knowledge thoughts. We are really worried about their lack of confidence in getting a proper biopsy. Biopsy is 10 o'clock Monday morning we have to be there at 9 absolutely terrified for Elgie. Extremely terrified. Should I not be?
Jackie
~me~
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I'm so sorry that you and Elgie are going through this. I wish that I could do something to take away some of the scariness. There is so much uncertainty and doubt, but we must accept it and try to hope and pray for the best.
And I don't know anything about a biopsy of the humerus, but I feel that you should go ahead with the biopsy, as Dr. Meyers suggestedd---he's the real expert.
It may not even be a metastasis, or it might be in a stage where, as you mentioned, where you can kick its butt.
Elgie's so lucky to have you, such a lovely, caring person. And it hurts me to think of you going through the fear. You certainly don't deserve this, but then nothing about cancer is fair.
While I've also had some new symptoms lately, I don't want any more scans, biopsies or tests; I want a break from it, after the radiation I just went through with the recent setback of my prostate tumor growing again.
I'll have to deal with it eventually, but for now I just want to rest for a few weeks and then when I'm more completely through with the fatigue from the radiation, I can begin to move ahead again.
Sometimes we just have to be accepting and just go through things a day at a time. Even if it's malignant, perhaps it can be knocked down with chemo or hormone therapy, or at the very least the progression can be slowed, as my own mets were slowed by Firmagon and then Xtandi.
There are still other avenues of treatment---such as the new immunotherapies, so please try to be hopeful, and not so scared. I know that it's easier said than done, but it's the only thing that gets me through the days.
Firmagon is considered hormone therapy, as it's a testosterone suppressing drug.
And, although I don't think that Xtandi is chemo, it's shipped in this big box, inside of which is a styrofoam box and lid, which resembles a burial vault for a cat.....lol Inside of that, there is a cold pak and cushioning bubble wrap, and then the bottle with the Xtandi is in a plastic bag with all sorts of warnings; A big "C" with interlocking "C's" and on a field of neon yellow, stating; "CAUTION chemotherapy material After use dispose of in accordance with established procedures
CHEMOTHERAPY DRUG Observe safety precautions for handling and administration, and finally TRANSPORT BAG."
But under definition, Xtandi is "a hormone therapy. It is classified as an 'anti androgen.'" So I guess that it isn't really chemo, but it's just about as powerful as chemo drugs, which is why it's shipped with chemo warnings.
(I looked it up on my tablet, while writing this). I never really gave it much thought. But conversely, it's a chemical and it's therapy, so by another definition it could also be considered chemotherapy, I guess.
Everything that you just wrote to me Eric was completely beautiful understandable and very soothing. I am so very fortunate to have you as a dear friend. Your explanation and understanding statements make so much sense the help me to try and remember that I have to go one day at a time. I too am so very sorry that you and each and every one of you Brave you extremely Brave and courageous men have to go through any of this. your kind words are very reassuring and helpful. I am so glad to hear that you are only taking a vacation from finding out what you can do to help the new unfortunate issues that have arisen. that lets me know that you are not giving up the fatigue is so very debilitating and I am glad you are resting and getting yourself ready for the next battle. Love and peace, Jackie
The results from the biopsy must be in by now, and how does it look? I've been so tired, sleeping a lot lately and neglecting my online friends. My inbox is hopelessly jammed with emails, and I had difficulties with the first temp caregiver that they assigned to me, so I had to fire her on my birthday.
But I've got a new temp, Natalie, who's a sweetheart, and I'm in good hands. So all is well for now.
But please let me know how Elgie and you are doing. You're always in my thoughts and prayers;
Oh no Eric! I am so sorry you had issues with your caregiver but so happy that you have a nice lady now. Hoping it won't be long before Ray is back. I totally understand any lack of communication because of your fatigue and well-being. I have been so behind on everything and I'm backed up in my emails also. I am finding it hard to keep up myself with all of LG's testing and back and forth to the doctors. he had to have an echocardiogram do to any exertion causing rapid heart beat severe sweats completely red face and much more severe fatigue. sonogram ultrasound on heart said heart is good but doctor did blood test for lots of things and is checking into a blood clot and next week will be a stress test.
As for the biopsy..... we are just not sure what to think... They did not find cancer cells in the biopsy but they warned us ahead of time that they may not be able to get the right spot. We have not spoken to dr. Myers yet I am calling tomorrow to see if they faxed him the report. Then we will see what he has to say or how often we have to monitor this site the left humeral head. I do believe the hospital sent it off for Caris testing. that should take a whole lot longer and I'm not even sure why it is sent off if there were no cancer cells in it. We are still confused as usual I so much hope and pray that you are going to feel better and not so tired. happy birthday to you happy birthday to you happy birthday dear Eric happy birthday to you sorry I did not know or I would have wished you a wonderful day and told you that it is your day to celebrate the GIFT of YOU to the world!
Please don't worry about me; you have so much on your plate with Elgie's problems. At least the biopsy didn't show cancer.
I'm know that he has a lot of anxiety and stress, which you share; we're all familiar with anxiety and stress in dealing with this infernal disease.
My new temp caregiver, Natalie is so friendly and cheerful, and we hit it off immediately, so I'm in good hands.
I'm still very tired, and don't feel very good in general, but my uro is suprised at how well I am doing, under the circumstances. But I honestly didn't think that I'd see my 68th birthday.
With the new treatments, especially the immunotherapies, we can all have some new hope.
Hi Jackie, There are certain things Dr. Myers is looking for. Is it possibly that this facility just doesn't have the right equipment to do an image guided biopsy?
If this could be the case, then I would go wherever it can be done. Can you find out further from Dr. Myers before proceeding, or while you are waiting. I think this is a fair question for him. Unless of course you are at one of the leading medical facilities already, that has the latest equipment. That's all that comes to my mind without know anything about where you are.
Wishing comfort and ease in your decision making...
I always feel so bad to bug someone too much when they are so extremely busy caring for other patients and trying to have a personal life also but after reading the responses I put my feelings aside and wrote a note to dr. Myers and I am awaiting his response. thank you so much for your response as it helped me to make my decision. To send him an email. I hope that you and hubby are managing and hanging in there and taking good care of both of you. I will keep everyone posted and keep everyone in my thoughts. Big hugs Genie. Have you heard from Gwennie?
No, I haven't.. I'm trying to figure out a way to be with all this and not be so consumed. That's not to say any communication from you would bother me.. the roller coaster ride gets tiring doesn't it. I'll say again, there has to be another way of 'experiencing' all of this. Living by numbers- just doesn't seem the way to live!!!
I am also trying to find a better way Genie. Everything is soooo time consuming and yes a roller coaster. You're a precious person. I hope you take care of you too.
The latest in the prostate biopsy procedure is the mri diagnostics (don't remember the exact name). They take a picture of the tumor via the rectum (not as bad as it sounds) and they then can use the mri with a pinpoint targeted biopsy next. It is very accurate in guideing the needle biopsy to the lesion. They may not have this diagnostic procedure everywhere in the USA so you need to check out where it is available. I had it done in Sarasota fl. and they were able to pinpoint the lesion. Good luck. irwin
Elgie did have the mri. I tend to forget to add the most important details when I start a new post. I will try my best to remember to add the details as they don't go along from the last post thank you so much ihurwitz. I will post as soon as I have a response from doc
STOP ... You need a Nuclear Scan NOW. Your situation sounds absurd to me, I am treated in Newcastle Australia by one of the best Radio Oncologists anywhere - he uses state of the art methods and procedures.
You have every right to be worried, scared and apprehensive ... I'd be scared out of my wits by incompetent, mindless, 'blind', invasive treatment.
GET OUTTA THERE AND BE REFERRED TO SOMEONE WHO KNOWS WHAT THEY'RE DOING ...
I have undergone a state of the art nuclear scan recently which can detect cancer particles in the walls of cancer cells down to under five (5) microns ... Probably 2 microns!!! - a micron is a millionth of a millimetre! It used to be only down to between 5 and 10 microns - this is a great step forward - an improvement.
Scientific Advancement in this area is very fast ... The Gallium 8 scan replaced the previous one which was only used for 6 months before the Gallium 8 arrived. The isotope maker costs $A64,000 ! The isotope is made in the hospital where the patient waits and the solution with a tracer substance - so the cancer is highlighted better - is given through a cannula - you then wait for 45 minutes or so for the tracer to be distributed around the body and highlight the cancer cell walls and then the scan is done.
Thankfully we have Medicare in Australia so, as a pensioner - though still mentoring PhD candidates in BioMed at uni gratis ... That's I give freebies ... An impecunious pensioner - but Hey! I contribute my little bit and 'What goes round comes around' - MEDICAL TREATMENT - IT'S FREE TO ME ... I do pay for subsidised medication $6.50 a script. I sympathise with those facing horrendous medical bills.
There is a caution - patients with very poor kidney (renal) function are usually not candidates for this because the body wouldn't be able to clear the active agent fast enough which would endanger the health of the patient.
The very latest nuclear scan is based on Gallium 8 ... It's a radioactive isotope which has a half life of 58 minutes!!! That means that 58 minutes is the time taken for the isotope to lose half of its radioactive strength - it loses half the the radioactive strength which makes the patient a source of radiation ... The patient must especially stay away from pregnant women and children for an absolute hour after the Gallium 8 infusion is given.
The main hospital in Western Sydney - centre of the population of Sydney - has signs in the toilet area of the Radiology department warning patients who have had nuclear scans to wait until the cistern of the toilet used is completely full and then flush ... But wait there's more - patients are asked to flush the toilet a second time! This is to prevent anyone who uses the toilet after the patient treated with the radioactive solution being harmed by radiation from the contaminated water in the toilet!
Get the scan BEFORE having a biopsy done ... MOST IMPORTANT ... YOU DO NOT WANT A BIOPSY DONE BLIND ... YOU AND THE DOCTORS NEED TO KNOW EXACTLY WHERE THE CANCER CELLS ARE.
I mentor PhD students in BioMed and I can tell you I research every possible angle of anything that is to be done to me personally in the treatment for cancer ... I had cancer of the prostate, biopsy blood tests - the lot showedGleason 7 and the bone scan showed the cancer had thankfully not metastasised.
The biopsy was done in a specialist clinic with a specialist nurse who set up the exact spot for each sample to be taken, the whole area of the prostate being biopsied was visible on a video monitor which I, the patient could also see, and the specialist urologist (a friend who had given medical talks to large groups of doctors for me and who did the prostatectomy for me) simply stood each time for each sample to be taken and fired the instrument set up in the right spot by the nurse to extract the prostate sample. You could even see areas of the prostate where calcification had occurred - various spots were pointed out and commented on by the nurse!!! Owzat!
That was a Monday and the urologist said " Aussiedad (he actually used my Christian name ... ) you haven't got time, how about next Thursday?" - I was prepped at 8am on the Thursday and the prostatectomy was done. I'd asked for the main lymph glands to be taken - they weren't - I'd had a six (6) unit blood transfusion ... Let me tell you that's means a major, major bleed ... How many units you got Bud? (8?). Bladder join was slow to heal so extra weeks with catheter left in and the skin surgical clips were overgrown by flesh so OUCH!!! on their removal - or ripping out.
After the prostatectomy pathology tests showed that the capsule had been broken in one area - hence the danger for the cancer cells to have spread to other parts of my body.... A radical prostatectomy followed up by radiation of the bed of the removed prostate WITH COVERAGE BY ZOLADEX BEFORE DURING AND AFTER THE RADIATION - in fact, for a year. I asked for this to be done and was told no, that is given in treatment if the radiation failed. My radio oncologist was adamant to not treat me with Zoladex BUT I convinced him to give the Zoladex ... The radio oncologist subsequently did double blind trials and now TREATMENT WITH ZOLADEX, OR SIMILAR, IS CONSIDERED BEST PRACTICE WHEN RADIATING THE BED OF THE PROSTATE FOR PATIENTS WHO HAVE UNDERGONE A PROSTATECTOMY!!!!!! No credit to me.
BACK TO YOUR CURRENT PROBLEM ....
GET A NUCLEAR SCAN BEFORE ANY BIOPSY -AND GET SOME DOCTORS WHO KNOW WHAT THEYRE DOING AND USE THE LATEST METHODS, TECHNIQUES, TREATMENT AND MEDICATION!!!
WOW- WAT A MARATHON ... IT'S NOW 4.51am AND I'M STILL AWAKE ... SUFFERING LATEST EPISODE OF CELLULITIS - RESULT OF BUS DRIVER NOT PUTTING THE KNEES OF THE BUS DOWN (nighttime and I couldn't see that the bus hadn't been lowered - severed ankle 2008 and get Cellulitis as result + have bad back ... Grade 3-4 spondylolithesis - between L5 and S1 - where your sciatic nerve comes out ... Ouch) WENT DOWN, INJURED FOOT WHICH HAD BEEN BROKEN, HURT BACK, BROKE iPAD, SPENT NIGHT IN EMERGENCY AND NEXT WEEKEND IN HOSPITAL ADMITTED THROUGH EMERGENCY ... Next week chasing venous ultrasound for DVt - $A1,000 A TIME AND JUST TOLD PSA IS UP AND NUCLEAR ULTRASOUND SHOWED FIRTHER LYMPH GLANDS INVOLVED IN BIG C ... GOING WELL FOR SPRING CHICKEN 75 NOT OUT ...
p.s. I'm on Lucrin ... Bugger of a medication for side effects - I've got every side effect ... Suffering in the extreme ... All side effects except those affecting pregnancy and uterus - being a male helps just sometimes -Feminism has taken over the world ... 40th wedding anniversary this year so I KNOW!
I take the 3 monthly injections and each time the effects are of a different strength ... This time's the worst - fatigue in extremist let me tell you - often days in bed after minor things such as walk a block down the street to the shops.
Still above ground ... Some suggest at death's door and doctors are trying to pull me through ... Sounds like Erjigs3's doctors are doing the same.
Elgiere also very smart so very kind and so very generous to research in it try and answer my questions and to help us. I do not have that kind of smarts.... but I am thoroughly reading and almost thoroughly understanding everything that you are explaining and telling me. I probably do not have the proper words to respond except to let you know that I am listening to everything explain to me and I am going to call the doctor and the hospital tomorrow and I am also waiting for dr. Myers response back to me. I am so sincerely sorry for all that everyone goes through with this awful disease.
yes Elgie had the F-18 PET scan and he has also had the MRI.
Aussiedad, I am so sorry for all that you have been through and all that you are going through and for having all of those nasty nasty side effects that go along with so many medications. and I thank you so very much for such an in-depth explanation from you and everyone. I will most certainly fill everyone in as soon as I know what we are doing regardless of what way we go to biopsy non Imaging, Imaging or to wait and go somewhere else.
Jackie, have you asked your current physican(s) where is the closest facility THAT DOES HAVE the image guided biopsy procedure? You still have time to call and ask. If they hedge, ask them how can they not know since this should be within their whelm of knowledge. Where do you and Elgie reside?
The hospital doing the biopsy is Lancaster General Hospital in Lancaster Pennsylvania. I will respond to aussiedad as soon as I write a note to Dr. Myers. This is possibly a 2nd cancer.
They DO have image guided biopsy. I think they cannot because of where it is located in the humeral head marrow area. I sent a note to Dr. Myers just now. I can only retain so much information and I forgot why. We were not prepared for this response at the consultation. I will call tomorrow and ask why they can't. They were not comfortable with doing it. They wanted him to let it grow more. That we did not want.
I was not writing about the guided biopsy ... I wrote about having the Gallium 8 Nuclear Scan BEFORE ANY BIOPSY ... after the scan you and the doctors can actually see the particles in the wall of any cancer cells which tell you whether there are cancer cells present. THEN they can do an image guided biopsy exactly where any cancer cells are located - that's what confirms the scan and indicates what procedures or protocols are to follow.
(ask for a copy each and every time that a procedure is done... scans and all ... - and ask for a copy of the doctor's notes if you like. In Australia in about 2001 the law was altered so that - the doctor's notes are his but he has to give you a copy if you request it ... depending on the doctor you might be asked to pay for photostatting costs!).
Regardless of what Dr Myers says in his reply get another opinion of an Oncologist of good standing - get your GP to refer you to another doctor - GET HIM TO CHOOSE AN ONCOLOGIST, AND ALSO A RADIO ONCOLOGIST FOR THAT MATTER WHO ARE TOP OF THE TREE - THE BEST OF THE BEST ... DO NOT take reports scans etc., to the new doctor ... let him start from scratch so that he's not influenced by the opinion of other doctor's.
I've found that the very top doctors are also usually very bright and compassionate and do not charge fees above what the patient can afford!
p.s. Earlier I wrote fatigue 'in extremis' let me tell you' ... that's a common Latin phrase for 'in the extreme' ... the autocorrect changed that from 'fatigue in extremis' to fatigue 'in extremist' let me tell you' - just so you know!
Sounds to me as though you are doing all the right things, including especially touching base w/ Myers for confirmation of biopsy plan in light of the hospital's expressed concerns. Myers is my pri oncologist too, and I've found him very fast in his email replies to Q via the patient portal.
My impression from your earlier post is that the nuclear scans Aussiedad is advocating have already been done (assuming the MRI was with a gadolinium-based contrast agent).
I don't have info for you about the feasibility of doing an image-guided biopsy at the top of humoris. That, of course, is much-preferred if it turns out to be practical. Myers should be able to sort this out. He's very familiar with Dr Datolli/Saratoga Imaging, for example.
It's not going to help your anxiety, but Dr Weber has told me in the past that needle biopsies of suspected bone mets are tricky and sometimes miss the relevant tumor material. That's not an argument for not doing them, just a caution. Bone biopsies are clearly one of the diagnostic tools sometimes ordered for a complete workup. Go here for more perspective: emedicine.medscape.com/arti... (if not a medscape member, it's quick & free to join).
The Gallium 8 Nuclear Scan is NOT the equivalent of an MRI with a gadolinium-based contrast agent ... the Gallium 8 is absolutely the latest and last word on Nuclear scans and NOT to be confused with the straight MRI scans regardless of the contrast agent used in earlier times. The technology of agents used in Nuclear scans is advancing at an incredible rate ... the common base for Nuclear scans for cancer detection ` the one before Gallium 8 - lasted only 6 months in common use before being discarded for the the Gallium 8. Gallium 8 is so new that it hasn't been formally approved in Australia on the system so that doctors and the system can charge like a wounded bull ... I was just fortunate that my Radio Oncologist is up with the best and latest ...
Very helpful information Dave2. it may not be helpful in my mind to relieve this stress but believe it or not it really was. just to know the facts is helpful. just want to let everyone know that my typing errors are due to me not being able to go back and correct issues albeit phone issues computer issues or technical issues here..??
LG has been to the datolli also for radiation twice. I am heading to Medscape to read sincerely thank you.
I had a nuclear scan at JH after surgery when my PSA didn't lower. All other scans were negative but the nuclear contrast agent developed by Dr. Pomper at JH allowed the oncologists to pinpoint the remaining cells and radiate them. Dr. Tran was my RO and Dr. Drake my MO. My PSA is now undetectable and I am off all drugs. You might want to consult with them before proceeding. God bless.
Wow!! I am so very happy or you that you are off of all meds and psa now undetectable! That is miraculous Joe32963! Thanks so much for their names It's always helpful to have backup!
Most sincere,
God bless you.
Jackie
Yo Jackie,
Ya struck a nerve, ya did! I've been contemplating lg's predicament. I think I'd get the biopsy done. I look at it this way, this is an odd spot for mets. Don't get me wrong, I know men have had cancer there. But, I would want to know now what it is. As for the blind biopsy, I would chance it.
We spoke to the NP who we had the consultation with and he told us that he does not do the procedures so he may have missed some information while we were there. Ugh. He answered our questions of.......why is this not image guided? He said IT IS image guided but once you get so far you have to figure out on your own the exact spot. He said most people have about a 91% chance of a good biopsy and Elgie's is a little less than that because of where it is located. He said we should know in about 48 hours if it is a good sample and it will be sent out for Caris testing and that will take longer. Elgie awoke this morning and said he was not going to have it done and then the doctor called us back and he felt better after this phone call and we decided it is best to have it done. So Monday morning he will have the biopsy. We had not heard back from Dr. Myers so after we spoke to the NP I sent a note saying to scratch looking for another facility. Dr. Myers wanted him to have it done anyway and I'm sure he understood the situation after speaking with the NP..........we just didn't understand
We thank each and every opinion or thought expressed. You're all so fabulous!
The studies listed below might provide some useful perspective on the positive tumor yield from bone biopsies in PCa patients. As a gross summary, they both say that bone biopsy yield depends on multiple variables as detailed in these recent papers. Image-guided biopsy can substantially improve the odds, but that's not the only relevant factor.
hello everyone, LG had his biopsy yesterday it was image-guided. He is just a little sore but doing well. the only news that we have is that if this does not come back as cancer he will have to watch this very closely. the doctor did not consult with us afterward or before the procedure. We do not know how long it will take for the genetic testing to get back. we really have no news to tell except the biopsy was uncomfortable. I will keep everyone posted as soon as we find out something. You're all so very kind and helpful. wishing everyone a lovely day. Most sincere, Jackie
I'm glad the biopsy is over. It's always apprehensive going through any procedure, and waiting for the results is also a lot of anxiety.
I hope and pray that the results are good, and that it isn't anying serious-- I'm having some symptoms in my neck, and it's most likely the arthritis, but I'm too tired to go through any testing right now, so it will have to wait---I can't face another procedure at this time.
Some symptoms, and anomalies in scans can be arthritis or something other than cancer, so I hope that it's something more easily treated.
You're such a nice person, and I hate to think of you and Elgie going through all of this stress, but we all go through this from time to time.
Eric, I read your posts. You are also one of the beautiful people in this group. You are so kind. You've been through so much and yet you give so much. It doesn't go unnoticed... Thank you
Little/Lot of Confusion..........We were able to find out that the biopsy sample that they were able to get does not have cancer in it. We are elated over that . The only bad thing is that the doctor and the biopsy interventional radiologist said that they may not even be able to hit the spot and that we would have to vigilantly keep an eye on that area to see if it grows. So it's a double-edged sword. For now we will take it as fabulous news
Very confusing though........At first they said the F-18 pet scan would tell if he had cancer then they said no the MRI will absolutely factually tell if he has cancer and they said that it shows cancer and then they say the biopsy will be helpful and then they say he doesn't have cancer in that spot but they may not have hit the correct spot.........whewww.. How in the heck can one trust anything being said!!!!!
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the fatigue is so very debilitating and I am glad you are resting and getting yourself ready for the next battle. Love and peace, Jackie
Low PSA and positive biopsy
Biopsy and Genetic Testing Experiences
Is biopsy good from 2 years ago?
