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HOW DO YOU CHOOSE!?!?

bpell0402
Posts: 61
Joined: Feb 2011

This has been so stressful. the research, literature all seem so conflicting.

My father in law , 60, was recently diagnosed. PSA 10.9, abnormal DRE with nodule, only 6 biopsies were done. cancer is bilateral. gleason score 3+4=7 .. no mets

I am concerned with side effects/quality of life more than anything..more so incontinence then ED. My mom just finished treatment for head and neck cancer. I feel like its so split down the middle.. half my research suggests surgery the other says radiation. And if its surgery, half say robotic the other say regular. He was told he is not a candidate for seeds but a candidate for radiation therapy.

Radition specialist lead me to believe there would be less side effects.. but then if the cancer comes back he's screwed.

It sooo confusing and sooo stressful. every specialist we meet recommends something different and they all say its really up to us! but how do you choosee??

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Sorry to read about your father in law and yes its difficult to make the choice. As you have learned each specialist is going to usually recommend their area for treatment. I'm 57 had robotic procedure 29 months ago. Also gleason 7 3+4 and doing well so far.

Continue your research and weigh the options. Remember they all have the same goal and that is getting rid of the cancer. Your father in law will need to decide which possible side effects he can live with. I would state that if he goes with Robotic surgery to make sure and choose a doctor that has done large amounts of surgery with the robot. It has a very high learning curve. I chose a doctor that had done several 1000 surgeries with the robot and also a high number of the traditional surgery. I had originally decided to have proton treatments but then found out my insurance would not cover so also check into that factor.

My dad had the proton treatments and is over 13 years cancer free.

One advantage with surgery is you will know the extent of the cancer following surgery. With radiation you don't know for sure the gleason score, spread etc. They entire organ is sent to the lab and I found I had a positive margin post surgery. This means the cancer went to the very edge of the organ removed. The cancer might be beyond but so far no signs of recurrance.

An excellent book to read Is Dr. Patrick Walsh's guide to surviving prostate cancer. He is a surgeon but very nicely discusses options and all about the cancer in a patients perspective and easy to ready and understand.

The side effects can be urine control, leaking, loss of erections etc. And as you have mentioned If my cancer comes back I have a 'second option' of radiation followup.

Larry

tarhoosier
Posts: 181
Joined: Aug 2006

If you, the poster, are more concerned with side effects, should we assume you are speaking for your father in law? If so, then radiation therapy is absolutely the choice with the fewest side effects compared to surgery. No question about that. If you (he?) are (is) confused by the differing opinions it is that for a man at his stage the results are equivalent. If there were a clear obvious superior choice everyone would do that.
Do not let him be concerned about saving radiation until after surgery. If the best choice is radiation then take that. Do not make a choice assuming it will fail. The best choice is the best choice, period. Plan A is not chosen because of Plan B. It is chosen because it is the preferred choice.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I can certainly relate to how any cancer diagnosis can cause a significant amount of stress and emotion within a family, particularly in view of your mother’s bout with head and neck cancer. On the other hand, it’s very important that you and other family members who influence your FIL keep this in perspective. From what you wrote your father-in-law apparently has received an “intermediate” risk diagnosis of prostate cancer with the 3+4=7 diagnosis but it seems to just be barely in the intermediate range.

The overwhelming majority of men with similar diagnoses will not die from prostate cancer but from some other ailment, heart disease being the most common. And unless he is into skydiving without parachutes, bungee jumping, or running with scissors in his hands he is not going to die anytime soon. The median time to death after diagnosis for all men diagnosed with all stages of cancer is 17 years. Since the average age for diagnosis is in the 60s it’s pretty easy to see that men diagnosed with prostate cancer in their 60s have about the same life expectancy as men who aren’t diagnosed with prostate cancer. So, ease the stress level down a notch or two.
There are a couple of things that would make me wary…the palpable bumps felt by the urologist and the six prostate cores taken at his biopsy. My understanding is that most men get a needle biopsy that samples 12 cores not six but either way, the 3+4 is the sample that you want to keep an eye one and I recommend that your FIL have these slides read by a pathologist that specializes in prostate cancer such as the lab at Johns Hopkins. The urologist can explain to him how to do this or you can contact the lab at JHU and ask them.

One thing about your post is a bit surprising to me. Why is a daughter-in-law of a 60-year old man the one who seems to be obsessing on this, visiting the doctor, and being stressed out? Does your FIL have a mental deficiency that keeps him from doing his own research? What about his spouse? Is there a history of prostate cancer in his family? Why isn’t he on the forum asking these questions?

The reason I ask this, and I do not mean to be hurtful to you, is that although I have two wonderful daughter-in-laws that I love dearly, I never dreamed of involving them in my decision or engage them in a discussion about which might be worse: incontinence or ED? I realize all families are different but frankly, I think you may be doing more harm than good here and let me tell you why I think this way.

My own diagnosis at age 59 was a shock to me and upset my wife as well. When I told my children they were naturally upset. One of the treatments I was considering at the time was Active Surveillance and my close family who was only trying to help but KNEW ABSOLUTELY NOTHING ABOUT PROSTATE CANCER, kept harping on the CANCER word and didn’t understand AS. “You have to do SOMETHING, you have CANCER” was a sentiment I got often. While in retrospect I now appreciate their concern it didn’t help one bit in making a decision and in fact it made it worse.

The decisions your FIL must make are complicated and require a solid lay understanding of the nature of his cancer, what treatments are available, and what the potential impact of those treatments could mean to his quality of life. When I was considering options I made a matrix of the things that were important to me such as maintaining continence, not losing any length or girth with my penis, keeping a healthy sex life, a high likelihood of addressing the cancer, long term relationship with the doctor I would chose, convenience of treatment, recovery periods, out of pocket costs, and so forth. I then ranked each treatment that I considered within these personal priorities and they included open or robotic surgery, IMRT radiation, SBRT radiation, proton therapy, HIFU, Cyrotheapy, brachytherapy, HD brachytherapy, IGRT, and so forth. I met with six specialists that included surgeons, oncologists, and radiologists. I sought a candid assessment of potential side effects and the impact those would have on my quality of life priorities. I did all this before I made my decision. Having my family bug me about what I was going to do didn’t make this process easier although I understood where they were coming from.

As I learned more and more about my prostate cancer and my options I begin to find that it was difficult to discuss it with my family. I realized that they simply did not know what they were talking about. My wife came along to the consults but she did not do any of the additional research that I was doing so our knowledge level grew wider as I zeroed in on my choices.

This is a decision only your FIL can make. If he doesn’t make it he is taking a pass on one of the most important decisions in his life. You cannot make it for him unless you are his legal guardian and you shouldn’t want to put yourself in that position.
This is a couple’s disease not an extended family disease and the impact of continence, libido, and sex life is something that he and his wife should be discussing. If he is not married then he needs to figure out what his priorities are on his own and that makes it harder but at 60 there is no way he should be thinking about giving up on either sex or continence and there is no good reason he has to. And BTW the notion the surgeon put in your head that if he does radiation and it comes back he’s “screwed” is nonsense. You should discuss recurrence options with each of the doctors your meet with and make sure they adequately answer your questions.

Believe me I do appreciate the concern you must feel for your FIL, particularly after your mother’s experience but these cancers are completely different, are not related, and have entirely different treatment approaches because of the fundamental nature of the cancer cells. This is why your FIL needs to educate himself about his cancer so that he doesn’t end up making bad decisions based on faulty data.

I hope you continue to support your FIL but when it comes to talking to doctors or giving him advice I think you (and other family members other than a spouse or legal guardian) should put your lips together and press firmly. Of course if he is unable to make these decisions and does not have a spouse then the roles change and I wish you only the best as you go through this.

BTW, I eventually chose SBRT (CyberKnife) radiation for my Gleason 6 PCA diagnosed in March 2010 and treated in July of that year. I had zero side effects and am happy to report that I am fully continent and enjoy a robust and undiminished sex life but the details of such I will not address with my daughter in laws OR their husbands.
Best of luck to you.

K

bpell0402
Posts: 61
Joined: Feb 2011

thank you everyone for your comments and support.

Although i took no-offense to your comments kongo i would like to reply:

Firstly, the reason *I* am post here as opposed to my FIL is the fact that I have been posting on the head and neck cancer board for over a year now and have found this site to be an informative and supportive place. Just because HE is the one with the diagnosis does not leave me without the need to vent or ask questions. I learned very quickly from my mothers diagnosis how helpful it is to speak to others in similar situations as opposed to just listening to doctors and thought I would reach out to the community here.

I also am a physician assistant for many years, a surgical physician assistant. Since my medical background grants me more knowledge that my FIL, we have all found it very helpful for me to continue to research all areas of this diagnosis to help him make the best decision. I am able to communicate with doctors differently than they can, and ask questions that they don’t think to ask. I also can translate for them when the doctors forget who they are speaking too.

I also love my FIL as if he were my own and want to help provide him with all the information possible to make the best decision for him, and luckily with the diagnosis we have the time to continue to educate ourselves. You specially stated that your wife did not do as much research as you, and I am trying to avoid that in my family. We are all going to doctors appointments together and whatever I read, re-search etc is shared with everyone. Just because libido and urination are considered private matters, doesn’t mean that I am not concerned about his quality of life because I have seen firsthand what this diagnosis can do to people. Had I not suggested to my father in law that we seek another surgeon he would have decide to go to a surgeon who has been doing robotic surgery for 1 year! He didn’t realize that that would matter, but I certainly did!

I have no intention of making this decision for him. I was simply looking for some guidance, support, just a re-assuring “I understand it’s a hard decision” from others here. We are all struggling with the diagnosis and the decision and we continue to discuss things together as a family and support each other in different ways. This discussion board was the key to my sanity during my mothers diagnosis and I was looking for a similar experience here.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Thanks for clarifying the situation a bit more and I am sure yor FIL is quite lucky to have you help him something through the data and the differing opinions the specialists all seem to give. I do think it is important that men take ownership and responsibility foe their disease and one excellent way to start this, in my opinion, is to join a forum such as this and interact directly with other men who are going through the same thing he is so I do hope you encourage him to participate directly.

Best,

K

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

Dr. Bpell,

I want to welcome you to this prostate cancer board. You are not the first physician reporting frustration and confusing and conflicting arguments when dealing with the matters of prostate cancer.

In PCa there are too many “variables” in the diagnosis without a straight feasible answer to address all the cases. One fits all do not exist and we have to “navigate” along the variables.
You just address that in your comment; “Radition specialist lead me to believe there would be less side effects.. but then if the cancer comes back he's screwed”.
I think that your “screwed” comment refers to possible salvage radiotherapy (SRT) in case of failure of the prime treatment. By other words, radiation after surgery is OK, but radiation after radiation is Not OK.

However, in prostate cancer treatments, such way of thinking at the initial stage is erroneous. The prime treatment should fulfil its goal at cure and failure should not be part of its choice. The initial decision of a treatment should be dependent on a properly and trustfully done diagnosis.

From the data you share on the diagnoses of your father in law, the most relevant are the presence of nodules in the positive DRE. These could be regarded as possible extra capsular extensions which, if confirmed positive, it could rule his case as localized but not contained.
It is typical to have the urologists requesting the biopsy with one or two additional needles from the traditional sextant being directional to those nodules. They want to certify if cancer has penetrated the shell, not just to confirm if cancer is existent. In modern times the sextant has been substituted by a set of 12 cores to cover more regions of the gland, including the seminal vesicles.
A positive DRE also instigates the need for additional tests and image studies to look for the presence of metastases. Only after gathering the all evidences can one be confident of his status.

The matter is important because it addresses the problem you commented above. Surgery done under the possibility of cancer spread would signal future recurrence which could be dealt (saved) with salvage radiotherapy. However, why should a physician subject a patient to two major radical treatments when the case could be done from the start with radiation covering the isodose planning of a SRT.
Risks and side effects would superimpose.

I would recommend your father in law to get additional testing and certify the diagnosis before committing to a treatment. Risks and side effects make part in the considerations for his young age. Nevertheless, if cure is not the prime goal then hormonal manipulations on an intermittent approach may be a better choice.

I hope to see more of your post in this forum. Many survivors in our boat would be grateful for your participation.

Hope you get that peace of mind and stop the anxiety.

Regards.
VGama

bpell0402
Posts: 61
Joined: Feb 2011

Vgama,

Thank you for the warm welcome and the VERY useful information.

I do want to correct you that i am a physician assistant .. not an MD. Although half my patients do actually call me Dr. Pell =)

Your post was informative and much appreciated. We do know that there is no mets. However, as you have stated he does have an abnml DRE and the cancer is bilateral. I was very upset to learn that his urologist did a 6 core biopsy and i have learned that the normal appears to be 12. However as he sustained an infection from the procedure and was hospitalized for several days, a repeat was not recommended. He has also NEVER had PSA prior to this to compare!!

I am also unaware at this point if the seminal vesicles are involved... another question added to my list for next weeks consult..

At this point i am thinking surgery will not be the choice... but he still remains undecided and conflicted ( as do i at times)... we continue to educate ourselves/research and will most likely be meeting with another opinion in the upcoming weeks.

thanks to all!

caseyh
Posts: 63
Joined: May 2002

I was diagnosed 12 years ago with a Gleason 3+4 like your FIL. I elected surgery and had clean margins and lymph nodes. The only negative outcome was that my Gleason score was raised from 3+4 to 4+3. Two years later, almost to the day, I had a recurrence. My PSA came back 0.2. I relate my story to make the point that you cannot be entirely sure at this point that the cancer is confined to the prostate. Hopefully, and most likely it is!
The next step was Salvage radiation (39 treatments). The doctor's decision to recommend salvage radiation was based primarily on the fact that 85% of all recurrences take places in the prostate bed. Imaging tests were ordered but, for the most part, the tests were not definitive. Salvage radiation is done primarily to “clean up” what the surgeon left behind or was unable to reach. There were two other patients scheduled for radiation at my appointment time. All three of us had surgeons who were considered tops in New York City. The salvage radiation failed for the three of us. When you think about it, it's not surprising. All three surgeons had done a great job. The failed radiation indicated that the cancer had metastasized to either the lymph nodes byond the prostate bed(most likely) or someplace else in the body. Imaging tools did not have the capability of identifying positive lymph nodes at that time.
Published results of freedom from biochemical progression for intermediate and high-risk disease, treated with combination external beam radiation and Brachytherapy are as good or better than those of surgery. Overall, actuarial freedom from biochemical progression at 16 years was reported at 82% (89%intermediate, 74% high-risk.) in the Journal of Oncology. I am aware that your post noted that your FIL was told that seeds are not an option. I would definitely seek a 2nd opinion about that. I have been told that external beam radiation without seeds is about 92% as effective.
Salvage surgery for failed radiation is more complicated but not impossible. I have been told by a MSK patient that he has been offered this option at Memorial Sloan Kettering . I think that the need for followup salvage treatment is less likely after external beam radiation since both external beam radiation and salvage radiation treat the entire prostate bed with roughly the same number of treatments.
I hope that this information adds to your knowledge base and is helpful to you in making a decision. The doctor that you select will definitely influence the outcome. Do your homework and choose well. I am 12 years out with a PSA <1.0. There is every reason for you and your FIL to be optimistic and look forward to many good years. Your FIL is lucky to have you in the family.

Best Regards,
caseyh

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