newly diagnosed metastatic prostate cancer with initial presentation of lymphedema

I wrote earlier regarding my Dads urologist’s strong suspicion of metastatic prostate cancer. It unfortunately has been confirmed and I was waiting to write a post until we knew more, but we are all terrified and this seemed like a good place to go to for some support. A little background and all I know at this point. My dad is 64 and was in great health, only issue was high cholesterol which was controlled well with meds. He is very active and was enjoying his 3rd year of retirement with my Mom. He felt fine until 6 weeks ago when he noticed groin swelling and thought he pulled a muscle trying a yoga class. After seeing his primary doctor and surgeon for suspicion of a hernia they sent him to an urologist. The lymphedema had gotten worse and was in the genital/pelvic area and one leg. PSA level 38, 20 months ago it was under 1.0. DRE was normal. CT scan revealed some enlargement in 3 groin lymph nodes, maybe more. Biopsy of one lymph node showed metastatic prostate cancer. He had the hormone shot from the urologist immediately and met with the radiation oncologist. The oncologist didn’t have a lot of information yet, but suspects it is in the bones and he has a bone scan on Tuesday. Oncologist said most likely the next step is chemo.

I have been researching endlessly and feel they could be doing more to find out how extensive the spread of his cancer is. PET scan maybe to see if there is other organ involvement? Shouldn’t they find out the extent of lymph node involvement as well? I understand a Gleason score may not be relevant at this point and they actually cancelled his prostate biopsy since it had already spread to the lymph nodes. Any other tests I am not aware of that they should be doing?

I think the biggest fear right now for us is that his lymphedema is getting worse. The urologist said the hormone shot should help with the lymphedema within 5 days and it has been 6 days and it is getting worse. He had been trying to think as positively as possible, but with the worsening lymphedema he is becoming less optimistic. He is very frightened that the cancer may be too aggressive to be helped much. They are looking into getting different opinions for treatment options as well. They are focusing on John Hopkins now and possibly somewhere else. Right now he is up for any treatments, surgery, clinical trials, whatever could help, especially with his lymphedema because he is so very uncomfortable. I think I mentioned this in my previous post, but they are in FL for the winter and Chicago for the summer, with FL being their main home. They are up for any travel needed though.

This is such a terrible disease and I am so very sorry for any of you having to go through this experience. Any insights would be appreciated as we are just feeling shocked, lost, helpless and most of all heartbroken.

Hello Why Now ~

We're here for you and your father. It sounds like you are putting together a medical "team" and that's what your father will need, going forward from here.

With a diagnosis of prostate cancer, the oncologists often become the "quarterbacks" on the medical team.

It's important to assemble a full team for advanced prostate cancer cases. Urologists, oncologists, and radiologists can all be consulted and should form a teamwork approach for your father's case --- sharing lab results, scan results, test results, and consultation advice with each other. Make certain you have an expert on this case, since you stated you have a diagnosis of advanced prostate cancer.

For my case, which is also advanced, I have my original urologist, my primary oncologist, and I have also added a UROLOGY ONCOLOGIST who specializes in prostate cancer, from a large medical hospital. He now oversees my entire case, in direct connection and communication with my local doctors. They have definitely formed a team approach --- what you are seeking, once everything gets assessed is COORDINATED CARE among all the doctors working on your father's case.

Yes, there are wide variety of scans that are available to pinpoint exact locations of concern. I've had bone scans, MRI imaging tests, and PET scans. Many of them involve the injection of contrast dye to assess various organs for any signs of prostate cancer metastases. There are PET scans which can detect lymph node involvement. Detailed bone scans will detect whether or not there are metastases in the skeleton. I've had all of these tests, given over time, to assess my entire situation: detailed prostate MRI, lung scans, pelvic scans, abdomen scans, skeletal bone scans, and also bone density scans. All of these diagnostic tests exist, but sometimes are not offered at smaller local hospitals --- and these tests are NOT needed for every situation, it's important to state. Fortunately, you have a bone scan scheduled for this week, and that will be informative in your father's case.

Your plan is forming, your doctors are at work, and they are still assessing. Soon enough, a clear treatment strategy will emerge. Yes, there is the waiting, wondering, and worrying that we all deal with in between ... sigh ... so get busy, stay active, and that helps keep the "wolves of worry" at bay ...

It's going to be important to form a close working relationship with your father's doctors. Consult with them, be honest with them, work with them, communicate with them, and ask those important questions. Your medical team members become important LIFELINES, as your father's medical treatment plan emerges.

With a diagnosis of metastatic prostate cancer, most of us in that particular boat have now been treated with a combination of ADT hormone shots PLUS a series of chemotherapy infusions. You'll be working out a treatment plan with your doctors soon, after the diagnostic tests are concluded. Your father will need to take a proactive, aggressive approach in his treatment strategy, with frequent consultations with his doctors.

My doctors take a very proactive approach with me, and in my case, my medical oncologist meets with me every four weeks to "stay on top of things" --- he's diligent, caring, compassionate, and very proactive --- for my case, I need those attributes in a doctor. We all deserve the best care we can find --- seek out the best doctor --- there is no substitute for a great doctor when dealing with an advanced case. Find the one with the true talents, the proven track record, the expertise ...

Your post lets us know you're still reeling from the shock of the initial diagnosis --- we've all been there --- you're feeling like you're on a merry-go-round or a roller coaster --- and you didn't even buy a ticket to the amusement park, right ? Give it some time --- things WILL calm down for you, I promise --- the dust will settle --- especially when a clear treatment plan emerges, as soon as your father's doctors are finished with the diagnostic tests to fully assess which form of treatments he needs.

My cards on the table, there are many of us here with a diagnosis of advanced, metastatic cancer. We're here, we're in the battle, we're pursuing treatments, and we're united here as a band of "Battle Brothers" --- supporting each other through it all. Now you're here with us --- you're reaching out, you've posted, you're seeking advice, and those are important steps --- furthermore, you are showing your support for your father and you are an advocate for him right now. Reaching out like this is a tremendous step forward ... that's the power of this website.

There are many of us here with advanced cases --- we're encouraged by the new treatments that have emerged in the past decade, and many have emerged in the past five years. New treatments are being developed, in the meanwhile. Changes in treatment practices have emerged, even in just the past couple of years, that have made some significant and effective changes in how advanced prostate cancer cases are now treated. We've got members here with advanced cases going on vacations, doing volunteer work, pursuing full-time careers, and setting goals for the future --- even while undergoing prostate cancer treatments. There's a beacon of hope there to share with your father ... and there are a lot of new treatments and medications that exist RIGHT NOW for your father's situation. Keep looking up !

Meanwhile, we're here to support you and your father as his medical treatments continue. We're a band of brothers AND sisters --- we've got members from every "corner of the country" --- and we've got valued members from all across the globe --- all of us here, united, and dedicated to lending our support, a bit of advice, our treatment experiences, security, and solace. We're all on this battlefield, an army united, defending and supporting all of our fellow comrades ...

While you are in the "waiting, watching, and worrying" state --- and ALL of us have been there --- my best advice to you and your father --- stay connected to friends, family, and faith during all of this, in whatever form that may take ...

Strive to continue with everyday living --- hobbies, interests, social events, pastimes, recreation --- all of it. Encourage your father to stay connected with his usual civic, church, and community activities. We all realize that cancer treatments become part of our lives, but don't let treatments DEFINE your life. Live each day to the fullest ... stay connected with the world ... and find the value in each day, as it unfolds.

Stay in touch with us here --- we're here to support you, going forward --- we care, we listen, and we are here to encourage you and your father, every step of the way.

Sent with my best, from across the miles,
Iowa State "Cyclone"

Why Now,

I know that's the last news you wanted to hear, but I hope you know that even metastatic prostate cancer can be managed.

With his PSA at 28, the bone scan and CT (with the positive LN biopsy) are certainly enough to tell him what he has to know, and PET scans won't tell him anything more that would change his decisions. Because he has detectable metastases, and rapidly increasing PSA, there is no question that a combination of ADT and Taxotere is his best bet right now. I don't think that any oncologist anywhere will tell him anything different because that has become the standard of care. If the ADT alone isn't shrinking his enlarged lymph nodes, then that combined with Taxotere will hopefully do the trick. I don't think he should delay in getting that treatment. The sooner he gets it, the longer it adds to his survival and the quicker his symptoms may resolve.

- Allen

Very sorry to hear about your father's diagnosis. Lots of good advice above.

Just wanted to add, with regards to the lymphedema, my father also experienced this. His was more likely due to his radiation treatments giving his lymph nodes a hard time. At first the docs just put some compression leggings on him, but what finally took care of it was a short course of Lasix, which is a strong diuretic. Might want to ask your docs about that if it isn't going away.

Why now....

You are in a great place for advice. It is natural to have the fears you are experiencing, trust me! But there are so many success stories here to draw inspiration from. There has also been many advances in medicine and so many new treatment options, even as one fails, another 2 are waiting to be tried.

As far as the lymph edema , I"m surprised the doctor would have said it would be gone in 5 days, especially if your dad was just given a hormone shot. I'm going to assume it was Lupron, which will actually increase the PSA for a short time. Lymph edema is certainly annoying, but don't let it scare you too much. It's fairly common and I'm sure it will recede once the drugs start helping clean up the system.

The MO sounds like he is doing things by the book. No other real scans are necessary right now. A hormone regimen and a chemo treatment will do the trick. The doctor will probably order a CT and bone scan about a month after the chemo gets done to see where things are.

Please keep a positive attitude and I think it is touching you being the advocate for your father. He is a lucky man.

To prepare for chemo...you can read through this thread, lots of good info:

www.healingwell.com/community/default.aspx?f=35&m=3487897

Good luck, please feel free to ask any specific questions and do keep us updated!!!

Jordan