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Hope??

Sadie marie
Posts: 63
Joined: Sep 2016

My husband is diagnosed with prostate cancer. His PSA was 87 and size of prostate was 130. His bone scan was clear and at present no organ. Doctor thinks it is in lymph nodes because of size and PSA.frozen dissection today. Won't do surgery if any in lymph node. Said he would have to throw everything at it and it is a huge mountain to climb. Gleason was 7 and 8. sounds so bleak. My husband is 64 walks 5-6 miles a day. Some urine urges and a little ED otherwise seems healthy good appetite and sleeps well. Is this hopeless.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Sadie,

Welcome to the board. I think you are upset with the diagnosis and anxious with the comments from the doctor. It may be an huge mountain to climb but this is not the end of the world. There are several types of treatments for prostate cancer (PCa) administered with intent at cure or to control it. There is hope and you should trust it. Your man will do good.

The size of the prostate (130 cc) is huge. This may turn surgery unpractical if done with robots/laparoscopy but the open modality can be done; however, the type of intervention dependent on the patient's status and the clinical stage, which results are imperative to decide on an option.

You commented above on "frozen dissection today". What does it mean? His your husband undertaking cryosurgery?

The urine urge issues and ED could be due to the size of the gland. It may be pressing up the bladder muscles (urgency) and constricting the seminal vesicles (passage and ejaculation control of semen). The PSA also would be larger than the level of a normal 25 cc gland. Another fact is that the big prostate may have such size due to benign hyperplasia, typical of man of all ages, which elevates the PSA naturally.

The Gleason 7 (3+4) and 8 (4+4) means they have found cells with grade 4, therefore with a more aggressive behaviour. These tend to spread faster but can be treated. In any case, I wonder why the doctor commented about lymph nodes involvement. Has your husband done any image study apart from the bone scan? Is there any MRI?

Can you reproduce here the contents of the biopsy's pathologist report? How many positive cores have they found?

I would recommend you to read about the disease and the treatments. Make a list of questions to expose in your next consultation and take notes or tape the conversations. Do not decide on any thing without understanding fully the contents. Getting second opinions is common in cancer cases.

Here are some links I believe being helpful to you;

About PCa:

http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

About a List of Questions: http://csn.cancer.org/node/224280

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

About nutrition:

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Best wishes and luck in his/yours journey.

VGama  

randy_in_indy's picture
randy_in_indy
Posts: 495
Joined: Oct 2009

Good to see a familiar face (VascodaGama) still on here from 2010.  Not sure if you remember me.  I had a short stint from 2009 to probably 2012 or so....There is hope Sadie and VascodaGama is a valuable resource.   I was Stage: pT3a, pNo, pMX   My gleason was a 6 pre OP but then became a 7 from the post-op pathology.  I am now 7 years without any positive PSA.   Go to my profile and ready my journey for more details.   Best of fight!! Randy in Indy

 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Please find my comments in your CSN E-mail box

VG

Sadie marie
Posts: 63
Joined: Sep 2016

frozen is to check regional lymph nodes if clean he will take out prostate if not he will close and go a different directio. He is doubtful they will be clean because of size and PSA. Cat scan showed nothing but again thinks size and PSA means lymph nodes not good. He said Doctor who did biopsy got cancer with every probe and if we didn't do anything my husband doesn't last 5 years.

Sadie marie
Posts: 63
Joined: Sep 2016

i am very scared

Old Salt
Posts: 720
Joined: Aug 2014

Many of us have been faced with similar or worse scenarios. And thanks to modern medicine, we are still around and able to hit a keyboard.

There are several approaches to tackle a situation such as your husband's.

It appears that your team has choosen surgery to start the fight with the option not to remove the prostate in case the lymph nodes are cancerous. In the latter case, it would be best to consult with a radiation oncologist who specializes in prostate cancer. Most urologists/surgeons are not well informed about current radiation therapies. Considering your husband's high PSA, it appears likely that hormone therapy will be in his future to kill cancerous cells that might have escaped the prostate.

Sadie marie
Posts: 63
Joined: Sep 2016

they have got bad news cancer in lymph nodes. Doctor going to start lupron tomorrow he is not hopeful at all of even 5 years. How do I tell my husband.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Sadie,

When we hear the word cancer we all become scared. Cancer is often linked to death but in PCa cases the bandit can be knocked down in most of the cases. Only in extreme advanced cases one can expect death at his door steps. From the data you shared I do not think that your husband is at such stage. The bone scan was negative and bone is the place where cancer likes to spread. At least you know now that he is not that advanced.
You are not educated in matters of prostate cancer so that you only see the negatives. You need to read more on the subject to know about what you are dealing with. Disregard the 5-years life sentence. You surely will be looking for a treatment and in most cases the patient lives over the ten year mile stone. 

The enlarged gland may constitute a problem for RT but such is rare and in most cases they use combine methods to reach all corners of the gland and surrounding tissues (Lymph nodes plus prostate bed). I wonder what clinical stage has his doctor attributed already. The voluminous cancer (all needles positive) plus the Gleason grade 4 (aggressive behaviour for spread) plus the high PSA of 87 ng/ml and the negative bone scan, makes me to guess that he is T3a which classification sets surgery at the risk of failure. His doctor may already believe that surgery will not be proper thought he is trying to find more reasons to justify the intervention. His negativity is logical and such is making you anxious.

In any case, you know that radiotherapy may be another excellent option to surgery so that you can (and should) consult a radiologist oncologist. I think that most survivors in this forum would advice you to get details on radiation treatment for the details in your husband's case.

Be positive and get second opinions to have peace of mind.

Best wishes,

VGama

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Sadie,

Where from are you posting? We just crisscrossed posts. This is 9am in my place. Are you in Europe?

I sincerely think your doctor being sarcastic with that comment about the life time set. It is not true at all. It seems that you took his comment wrongly or he is selling you a quick fix. Please read my above comments.

The lymph nodes positive response indicates that surgery may not be the best choice. You should get second opinions from a radiologist and start anything from there. The Lupron makes part of a hormonal treatment and it is good. It wouldn't interfere with a radiation approach. In fact it will help RT by sensitizing the cancerous cells for better absorption of the radiation (a better way to kill the bandit).

Be confident and tell the truth to your husband. Both of you should be strong and confront the case with positive thinking.

Best,

VG 

Sadie marie
Posts: 63
Joined: Sep 2016

i live in Illinoi. I was up thinking and thought I would post what happened yesterday. I am trying to process. 

Will Doran
Posts: 207
Joined: Sep 2015

Sadie,

Yes, there is hope.  Don't give up.  I was diagnosed in August 2013 with a PSA of 69, and a Gleason of 7 (3+4).  Had surgery in December 2013, followed by two years of Lupron and 8 weeks of radiation to "clean up" any cancer that might have been missed in the surgery.  Post surgery, I learned that I had one very small spot in one lymph node.  I am now three years past diagnosis and my PSA continues to remain at Undetectable.  I've been off the Lupron for 9 months and my Testosterone has come back up from it's lowest point of 17 (250 - 1,100 is normal range) to 320, as per my last blood work 3 weeks ago.  At first, It looked pretty grim for me.  However at this point my doctors are talking 10+ years from now, and we are talking about what treatments we might look at if my PSA comes up to the point that it needs treated again. 

You said:  How do I tell my husband.   I  would think the doctors should tell your husband, and explain all of his situation.  Just my thoughts.  When I was diagnosed the doctors talked to me and my wife together.  My wife has been my biggest support.  The doctors (Urologist, Chemo Oncologist and Radiation Oncologist) all talked to both of us.  Make sure and be your husband's biggest and strongest form of support.  It's a tough fight, But, as it says on the "wrist bands" my wife wears all the time--- "Nobody Fights Alone".  Make sure and talk to all doctors, Urologist, Radiation and Chemo Oncologists, and learn all the options. 

You stated that your husband walks 5 - 6 miles per day. Thats' great.  I was a road cyclist and was on the road two to three hours per day.  My doctors say my physical condition has been my biggest help in this battle. I still do 100 + mintes per day on my indoor spinner bike , my physical therapy and my free weights every day.  I turned 70 in July 2016.  Your husband is younger than I was when diagnosed.  So, Yes, there is hope. 

I'm not a doctor, but I sure know how you and your husband feel.  So, hang in there and fight like the devil.

Know that your are both in my thoughts and Prayers.

Love, Peace and God Bless

Will

Sadie marie
Posts: 63
Joined: Sep 2016

thank you. They could not do surgery it was in lymph nodes. He started lupron today and they are checking if he can get in a clinical trial to see if he can do xtandi at same time. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Sadie,

It is probably a good thing the doctors biopsied the nodes prior to the prostectomy, since removing the gland would have been for no reason, and no doubt would have weakened him a lot.  Unless his particualrs change a LOT, a prostectomy for him would with virtual certainty be a bad thing.

Hormonal therapy, most likely combined with radiation, can very likely give him a lot of years, even good years, in which he may feel relatively normal. Guessing his lifespan at this early point was irresponsible on the part of his doctors.  Same with us here at the Board:  we can only relate what we have experienced or (like me) seen transpire in friends and loved ones.

max

.

Sadie marie
Posts: 63
Joined: Sep 2016

how reliable are bone scans? the bone scan was clear but doctor says since cat scan didnt show lymph node involvement the bone scan could be false too. there was one bright spot on hip but they had him come in and xrayed and said it was nothing. there is no bone pain.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

The healthiest attitude to have right now is patience, combined with hope.

Let the specifics trickle in. You are learning more every day.  Bone scans generally have high resolution and accuracy.  Prostate tumors in the bone do not usually cause pain until the tumors are significant in size, so no pain, while a good thing, is no form of proof against nascent tumors being present there. (I have had friends with heavy bone metastasis who did not have bone pain.)

max

.

Old Salt
Posts: 720
Joined: Aug 2014

Your question can't really be answered with 100% certainty. False positives and negatives do occur. The test equipment and the skill of the specialist reading the image play a major role. In the latter context, I believe that the most sensitive bone scan is done with (19F)Sodium fluoride. Is that the scan that was used for your husband?

More in general, let the medical process play out step by step and in a logical way. In other words, let's base the therapeutic approach on the data that are available, not on some perceived problem that may not exist.

PS: Max said something similar in the above post, but in a nicer way.

Sadie marie
Posts: 63
Joined: Sep 2016

agree just going by doctors lead not sure what kind of bone scan, do you know how long it takes micrometastic to become metastic or is there a difference.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Sadie,

A cat scan does not provide the resolutions that a 3T multiparametric MRI does. The MRI is more likely to indicate if the cancer has escaped the prostate, if the cancer is one lobe or two, and the amount of suspicious lesions. ...I strongly recommend that you ask for an MRI......................additionally there are PET Scans.....that are worth investigation to find the best one that is available to you.

It is important for your man to see a Medical Oncologist. This professional is the most quailified to administer hormone treatment, and manage his case.

Best

 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

I like to read your queries. It signals that you have been absorbing information and researching its meaning. This is the best you can do at the moment. How about your husband, his he aware of our discussions?

Your last post comments about the CT results (cat scan didnt show lymph node involvement), and with that piece of info I now believe that the doctor looking upon the case is reliable. The typical doctor would rely on the collected data (biopsy, image studies and symptoms) and would proceed forward with a clinical staging. In other words, your doctor did a step further and decided to get a real sample of the close lymph nodes to judge and compare with the negative results of the CT and Bone scan. He is aware of the limitations of those exams. Bone scan is quite reliable but CT only detects tumours larger than 1.2 cm (1.5 cm on average depending on the depth where the tumour is located). 3T MRI would have provide a better image study. In any case, the diagnosis is now more reliable and it made the doctor to reject surgery as appropriate to this case.

The above data may be a relief for you as it indicates that the metastases may not be at far places. You can now forget about that negative feeling of last week. There is hope and you can see it now.

I wonder why you're inquiring about the micrometastatic cancer. Has the doctor commented on such issue?

To answer your question on the matter, the difference is related to the way that the cancer multiplies. Micrometastases are sort of cancerous cells spread in small colonies in a vast area wherever a tumour is sort of a concentration of cancerous cells gather together growing and forming a big tumour. Accordingly, micrometastases are hard to be detected by the traditional scans due to its size. These type of cancer is best detected with radio-tracers used in PET scans. The one showing the best results in terms of detection reliability is the 68 Ga PSMA PET exam. We have discussed the exam here in several threads. Please read the comments in this link;

https://csn.cancer.org/comment/1553746#comment-1553746

I (and some survivors here) still recommend you to get second opinions from other specialists. You can follow this doctors lead (your words)but an urologist may not be proper if the case relates to radiotherapy and hormonal manipulations.

Best wishes,

VGama

Sadie marie
Posts: 63
Joined: Sep 2016

the reason I asked that question is the doctor said since scan didn't show lymph node it may have spread with micro metastatic so I have gone from being glad it wasn't in bones or distant places to worried it's there to

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

PCa does not spread and create colonies that easy. Out of the gland at the new living quarters the environment is hostile for foreign cells to survive. They have to compete with the locals for blood supply or it must have the ability to create newer blood vessels. Usually metastases are found where blood supply is ready available, such as the lymph nodes (the filters of the circulatory system) and organs. Bone is usually the last place where to set. Of course, there are exceptions but are rare and that never happens to us.

In any case, you can try localizing those colonies (tumors) with a 68Ga PSMA PET scan (not so sure if they do it under Luprons effects). Your husband could inquire his doctor on possibilities of participating in a running clinical trial for this exam. You can also inquire directly contacting the person in charge. Please read the story of this survivor that has done the test sucessfuly;

https://csn.cancer.org/node/303009

https://csn.cancer.org/node/304131

 

 

 

Sadie marie
Posts: 63
Joined: Sep 2016

they are checking if he can do a trial that is giving xtandi at the same time as lurpron said there was good results have you heard of this trial

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Xtandi has been approved for administration in CRPC patients (Castration Resistant prostate cancer). This is not your husband's status but he can benefit from a protocol using this drug together with radiation. Clinical trials are safe and free of charge. However, you should check if the trial his doctor is proposing doesn't interfere/prohibit other treatment (such as chemo, brachytherapy, proton radiation, etc) that could turn to be the best option for his case. Another aspect you have to consider is that these trials usually are done for comparing two cohorts of participants (with and without the drug) so that one should certify that one doesn't falls into the placebo group.

You can find details in this link;

https://www.cancer.gov/about-cancer/treatment/drugs/enzalutamide 

One trial involving radiation with Xtandi is here;
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=772357&version=HealthProfessional&protocolsearchid=6645739

Xtandi (enzalutamide) is an antiandrogen of the class of the traditional Casodex. It is more refined and acts at intratumoral level (within the tumor). Typically it is administered in combination with a LHRH agonist like Lupron. These are drugs of the hormonal arsenal. They are paliative and manage to control cancer's advancement, but do not lead to cure. Your husband should investigate on radical treatments that may eliminate the cancer. Probably a protocol of HT plus RT. You should discuss about this with the doctor.

Best,

VG

shipjim's picture
shipjim
Posts: 137
Joined: Apr 2006

I'm concerned that you don't seem to have a very communicative MD.  Mine was very careful to address any concerns we had and threw some we didn't.

I also consulted several MDs at the time.  The robot was still fairly new and expensive in South Central TX there was one in Houston and one in Austin.

Based on research, I went to Austin and was very pleased.  The clinic held seminars both pre and post op, invited patients to attend any and all sessions to Q&A the MDs and other patients and specialists.  It was a great program and was very helpful.

If you've already started on lupron, I don't know that getting another opinion is of value now, other on the site will have better ideas on that topic.

I don't know how they can give you a 5 hr timeline.  6 Mos. to a year maybe but after that I thinks its crap shoot for time.  Mine wasn't spread and we treated it early on discovery.  It's been over 10 years, I'm 70 and have had to deal with other problems like recognizing I'm not 30 any more!

Take heart and rely on the site.  Good luck,jj

Sadie marie
Posts: 63
Joined: Sep 2016

back to Doctor who said he wasn't going for cure so that brings me back to no hope

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Sadie

Do not give up. Get a second opinion from another doctor. Which data does the doctor have that made him to give up in a treatment with intent at cure?

Get the answers.

Sadie marie
Posts: 63
Joined: Sep 2016

i guess since it was in lymph nodes he mentioned to me 5 years would be lucky maybe 2 but he did have someone that was 10 years. I did not tell my husband.

Sadie marie
Posts: 63
Joined: Sep 2016

i want to thank everyone for being so positive and sorry for the pessimism I just feel the doctoris negative talk course he said I was only hearing what I wanted

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

How far is the doctor correct by saying that you are hearing only what you wanted? He might be right. You need to get evidence about that to stop the worries. How about gathering all existing data/reports and having a consultation with another doctor? I believe your husband would accept that.

From your posts, what surprises me is that the doctor is discussing the treatment with you not at the presence of your husband (I guess), so that you avoid telling him upsetting comments. You need to work together in finding the right way. Something that is acceptable for both of you.

Please note that we are not doctors. Our advices are solo based on own experiences. We have confronted the same issues with our families.

Best wishes for peace of mind.

VG

 

Sadie marie
Posts: 63
Joined: Sep 2016

We went in for surgery consult Doctor believed already in lymph nodes he would try to do surgery if lymph nodes clear if not he would stop at that time he stated to both of us if nothing was done it wouldn't even be five years and when I stated wasn't there any hope he said it was a huge mountain to climb. And I said you said it wouldn't be five years that's when he stated you are only hearing what you want I said if you do nothing. On day of surgery when he came to talk to me and tell me and my daughter it was in lymph nodes and for him to come in for lupron shot next day he again stated not 5 years maybe a good 2 but he did have one patient with metastasized and they had had it 10 years no word on climbing a mountain. The next day for shot he said he had found in 2 of 7 on one side and the other side was sent to test. No word on outlook no mention of mountain climbing just might see if he could get in trial of xtandi at same time as lupron. I am not making decisions.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Sadie,

In my opinion,, you and your husband should be the ones making the decisions. Not the doctor. His work is to diagnose the problem, inform you and then recommend a treatment. On your side, you need to educate on the matter and chose what you like. The treatment will be administered only after you and your husband has agreed and sign a contract, informing that you are well informed about the therapy, its risks and consequences and that you will be relieving the doctor and the hospital of any wrong doing if the outcome is not the expected.
The only matter that is not on your side is any malpractice by the doctor or hospital staff.

You do understand that researching and second opinions from specialists are important if we do not know much about what we have been recommended. These should be done by an independent physician not from the group of the initial doctor, because those might be biased. Once satisfied with gathered information then you are prepared to choose what you want and where to do it.
Many patients for whatever reason it may be decide to follow his doctor's recommendation blindly. This is the mode used by your husband and it is not bad too. However he cannot blame the doctor later for not giving preferences to other forms of treatment or even explaining it in detail.

I do understand that 60 hours a week of work leaves you without much time for spares. Cancer requires loads of attention and dedicated time turning our lives upside down. Through my posts I am trying to help in lowering your fears, but it seems that I have increased them. I am sorry if such happened. Back in 2000 I had similar doubts and suffer till I found a satisfactory way to deal with the problem. That took me 3 months since diagnosis.

You need to find a way to stop worrying and believe in something.

Best wishes,

VG 

Sadie marie
Posts: 63
Joined: Sep 2016

He got a Lupron shot Friday a nd was just told not a cure and effects was male menopause I gave him a list of things to do today like get his results and maybe go to American cancer to help him navigate through institutes that deal with prostate cancer and see where we can get second opinion with our insurance from what I have read online some do quite well and some sights say several or many years but there are others that say 18-24 months which is not tomorrow but feels like it

Gleason 9 fight...
Posts: 14
Joined: Sep 2016

My boyfriend was resently diagnosed with advanced prostate cancer.  PSA 40 to 48 in four weeks.  Gleason grade 9.  He is 62 with no symptoms.  Urologists stated very aggressive, however starting week seven of this journey and will finally get bone scan and cat scan.  Meet with urologist day after.  Hope Hope Hope thats what everyone tells us.  We are trying to be hopeful but honestly the doctors make that tough.  I got his results first and chose to tell my boyfriend, one of the hardest things Ive ever done.  We cry a lot both very scared I have done extensive research. But am new to this.  We want a second opinion but would have to wait another four weeks for appointment.  So i have contacted the Cancer Treatment Center of America.  Waiting to see if insurance will cover it.  Just wanted to let you know I fully understand your feelings and frustration.  I at this point feel helpless also.  Maybe you and I can work on that together so we can better support the men we so dearly love.  Maybe we are their hope. Best wishes and luck.

Sadie marie
Posts: 63
Joined: Sep 2016

did you get results yet

Will Doran
Posts: 207
Joined: Sep 2015

Sadie, 

My MRI's did not show that I had a lymph node involved.  My Prostate lit up bright red ( I saw the images), but the spot in the one lymph node was too small for the MRI to show it.  That was found in the post surgery pathology.  Pre surgery, I was told two years if I did nothing.  I am now three years after Diagnosis.  Doctors are talking future plans for 10+ years.  My PSA is still considered undetectable even though I have been off the Lupron for about 10 months at this time, and my testosterone levels are back up in the normal range---320, with normal range being 250 - 1,100.  My testosterone was down to 17 at it's lowest (as I stated before).  If my PSA comes back up to a "danger" point, then I will have to go back on Lupron, or maybe go through a surgical castration.  However if my cancer should become Castration Resistant, then I will have to go on Casodex or Xtandi. As VG said, "This is not your husband's status but he can benefit from a protocol using this drug together with radiation."   I had Lupron for two years and 8 weeks, 5 days a week, of Radiation as "clean up", post surgery.  My doctors have expalined that those drugs (Casodex & Xtandi, and there are a couple others--names have slipped my mind) surround the cancer cells and make the cancer cells think there is no testosterone to help them grow.  That's a very simplistic explanation, but what My doctors told me in the simplest terms.  In fact the doctors group I am with was actually in on trials for Xtandi (I think that's the one he said).  It can be , as was stated by VG, given with Lupron.  My doctor said this is all off in the future, for me, if needed.  I was told all about this even before I had the surgery, by my Chemo Oncologist.  She said I might have to stay on Lupron for the rest of my life, or have the surgery.  But for now, I'm holding my own.  It's a constant worry, but I try very hard to go one day at a time and enjoy every minute with my wife.  We do yard work together, go for drives, exercise together, etc.  Some how we got over the initial shock of all this and have tried to move on together and live one day at a time. 

Please, dont' give up hope.  Keep after this and fight hard.  Both of you. Look at every day as the gift that it is. 

Love, Peace and God Bless

Will

Sadie marie
Posts: 63
Joined: Sep 2016

Husband went to pick up results told he had to wait 2 weeks for it to go through channels really frustrating how are you suppose to get 2nd opinion one thing though his original psa was 87 and day before lymph node dissection it was 82 

Old Salt
Posts: 720
Joined: Aug 2014

Almost all of us were shocked when we received the CANCER diagnosis. At that point, we don't listen well to what the doctor(s) says. The information is all new and we may not have the proper background to understand the highly technical aspects of the disease and possible therapies. Therefore, we (old timers) generally recommend to

have other people with us at all appointments; you mentioned a daughter. Can she come along?

Take notes (both husband and wife, independently) and compare notes once home. It is very difficult for one person to catch all that a doctor says.

Ask if you can record the conversation; that makes it easier to figure out later on what went on in the office. In that case, you won't have to take notes, obviously.

Ask for copies of all test results. Even though you may not be able to decipher the information, we can help.

 

PS: Perhaps the lower PSA (82 vs 87) is due to the Lupron having an effect.

Sadie marie
Posts: 63
Joined: Sep 2016

Hadn't had shot yet. Doctor didn't talk about surviving when we did go in for shot. A friend of ours went with us. I know bone scan isn't most accurate but it was clear just one spot on hip which was xrayed and cleared. So if there is micro metastatisism how long before it shows up?

Sadie marie
Posts: 63
Joined: Sep 2016

best place for second opinions and can you get without records because it's going to take two weeks to get records. We see oncologist tomorrow

hopeful and opt...
Posts: 2226
Joined: Apr 2009

if you are able, simply go,  and ask the secretary for a copy of the records

Sadie marie
Posts: 63
Joined: Sep 2016

We tried she said it had to go through channels

Sadie marie
Posts: 63
Joined: Sep 2016

went to oncologist today. Very positive. Thinks it is regional no chemo but lupron and radiation. First bone scan was negative is ordering a second one to confirm. Should we be worried.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

I have not been following your posts too closesly, Sadie, but it seems that you and your husband are now getting some focus regarding treatments and his situation. The news you have related is about as good as it could have been:  The doctors think his disease is localized, and his bone marrow is clean.  Give thanks.

Hormonal Therapy (HT) and radiation (RT) are what most of us here predicted he would receive.  Together, these can bring a man back from the brink, and give many years of wellness.  Hormonal treatments can have significant side-effects, but these (I have read) are largely manageble.

Take this one day at a time, and cease being frantic.  As the news has filtered in, it has been mostly "good" news, in the sense that it could have been far worse.

Know that he very likely has a lot of time left with you  -- a lot.  No one knows their remaining time: car wrecks, heart attacks, space debris falling through the ceiling.  Breath deep and be glad.  Schedule a relaxation activity for every day: Walk around the block, go have a good cup of coffee, buy a puppy --do something to escape from the worry. And do it every day; make it part of your routine.

Fear is useless; what is needed is trust.

max

Sadie marie
Posts: 63
Joined: Sep 2016

What about 2nd bone scan in a months time to confirm. What are the odds the 2nd one will show something?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

Sadie,

I am insufficiently versed in scanning techniques to give an opinion regarding your second-scan question.

Remember to start a relaxation activity for yourself.

max

Old Salt
Posts: 720
Joined: Aug 2014

It's impossible to determine the odds because we have far too little information. What kind of bone scan was the first one; was the scan done properly; how 'expert' was the radiologist? Similarly, we don't know anything about the second scan. I wrote earlier that there are at least two different methodologies for bone scans.

And even if we had more info, nobody here has done a comparative study to see if a second bone scan would yield another result. It just isn't a good question to ask under the circumstances.

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

This is the first post you use the word "Very positive". Congratulations. You have now two opinions to think about. One for hormonal therapy (the first doctor) and the second for a combination therapy of lupron plus radiation (from the oncologist).

I do not understand on the need fo a repeated bone scan in such a short time of the previous. Why was that requested? Is there any doubt about the results of previous scan?

I hope things move now in the right direction and that you feel more comfortable. You can also discuss with the oncologist to verify any possibility in participating in the clinical trial I provided the link above, that includes HT with Radiation (his suggection). You can also request for a multiparametric MRI to check lessions on soft tissue. The results would provide defined targets for radiation.

One trial involving radiation with Xtandi is here but there some adding Lupron. Just inquire;
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=772357&version=HealthProfessional&protocolsearchid=6645739

Good luck,

VG

Sadie marie
Posts: 63
Joined: Sep 2016

The only one doubting is surgeon who did lymph nodes and said around 2 years. Oncologist checked in with him and wants a second bone scan to confirm clear. Will Lupron interfere? What if second is not clean do you do third. What does it mean if not clear.? I was so positive yesterday today not so. 

Sadie marie
Posts: 63
Joined: Sep 2016

It was urology surgeon who ordered 2nd bone scan

Sadie marie
Posts: 63
Joined: Sep 2016

Now saying in bones. In the hip area where they took X-ray and cleared originally. Does anyone know if this is treatable. Back looking into research with Xtandi.

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