Lymph nodes: Okay so I'm having a... - Advanced Prostate...

Advanced Prostate Cancer
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Lymph nodes

DaC00tie
DaC00tie

Okay so I'm having a dilemma with reservations. Briefly, I've been in treatement for metastatic prostate cancer. 30 days bicalutamide, Lupron injections, and Zytiga w/ prednisone. My PSA is currently 0.4. I had radiation treatment to the tumor in my femur and the latest results said the latest CT scan now shows nothing but scarring where the tumor was (good news, I think). Anyway, at my previous visit my oncologist mentioned a promising clinical trial that he thinks I'm a good candidate for and wants to sign me up for it if I'm agreeable. Then, at my last visit with my radiation oncologist the head of the oncology department (5 years in that position, very young guy) tells me that they had a peer meeting and they want to do 7 weeks of radiation (5 days a week) on my lymph nodes. He listed the side affects and they are nothing nice, and they are usually permanent. They continue after the radiation treatment. Diaryhea, more frequent and quantitive incontinence, possible radiation burns, etc. And they are pushing hard for this, want it done ASAP. I just had my femur radiation two weeks ago. And my questions are, what happened to the "promising clinical trial"? And why wasn't my oncologist at this appt (head of oncology and radiation oncologist only, and student)? You see, this is seriously going to alter my quality of life. So before I go ahead with this I want to be sure about it. Now I only have a perspective based on intuition and "signals", but, it appeared to me by the reactions of the head of oncology that he was against it, even though he didn't say so. I just got that feeling from watching him. So I got proactive, my treatment is currently at Stanford which is ranked #3 in California. I called up University of California San Francisco, ranked #1 in California, and I scheduled an appt with them for a 2nd opinion and possible change of treatment centers depending on what I hear. I made the appt before the radiation treatments begin because once they begin, any damage caused cannot be reversed. Suffice to say, I don't have 100% confidence and trust in my oncologist. Most of this stems from his not volunteering information. I almost have to drag information out of him. Information that in my opinion is important and that he should be volunteering without me having to ask. I don't know what all I should be asking, hence maybe I'm not receiving all the information I should. Let's face it, I'm in a situation where I'm having to make decisions that greatly affect my life. And I need information if I am to make intelligent decisions. Does it appear to anybody else that they are pushing things unusually fast with the radiation treatments? Does it appear I'm making the right decisions about getting a second opinion? Or am I just spinning off into orbit mentally.....

34 Replies
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What did you end up doing and how are you now.

DaC00tie
DaC00tie
in reply to Doug47

I haven't decided what I'm going to do yet. The radiation treatments are scheduled for when I come back from vacation.....in November. But I do have an appt for a second opinion, I have done that much.

I say you are being wise. Trust your gut. Get a second opinion since you can. It is your life and you need all the information before you step out into something that you aren’t convinced it is worth the consequences. For what ever reason docs don’t seem to give a crap about side effects!!!

That is incorrect that the side effects of pelvic LN radiation are usually permanent. Most side effects are mild and transient. Ask him for documentation of that. I'm sure the ROs at UCSF will not agree.

DaC00tie
DaC00tie
in reply to Tall_Allen

Thank you. I wondered how they could make a blanket statement like that about the side effects being the same for everybody and "permanent". It was the head oncologist that told me that, he's the head of the department. A very young looking doctor that has been there (cough) 5 years.

Tall_Allen
Tall_Allen
in reply to DaC00tie

It is a radiation oncologist and not a medical oncologist who would know.

Buyyounouski is at Stanford - was he the one that told you that?

DaC00tie
DaC00tie
in reply to Tall_Allen

A. Dimitrios Colevas

Professor of Medicine (Oncology) and, by courtesy, of Otolaryngology - Head and Neck Surgery at the Stanford University Medical Center

*The guy above is the doctor that claimed to be the head of the oncology department and told me what the side effects would be.

Hilary Bagshaw MD

Clinical Assistant Professor, Radiation Oncology - Radiation Therapy

*The lady above is my radiation oncologist who performed the radiation treatment for the tumor in the femur, and will be performing the radiation treatment on the lymph nodes (unless I choose to have it done at Stanford's San Jose Oncology center (it's a matter of geographics)

DaC00tie
DaC00tie
in reply to DaC00tie

They were both in the office together with me when it was "explained". So if the radiation oncologist knew something different that what the head oncologist was saying.....I would think she would have said so.

Tall_Allen
Tall_Allen
in reply to DaC00tie

I would not expect a specialist in head and neck cancers to know anything useful. Sandy Srinivas is the head of urologic oncology at Stanford. Buyyounouski is the handles radiation oncology for prostate cancer. Perhaps you can see them instead.

DaC00tie
DaC00tie
in reply to Tall_Allen

That was a big red flag for me when I saw it...."head and neck" cancer??? WTF. My cancer isn't anywhere near that. Thank you for your information, it disturbs me a lot. Colevas claimed to me that "HE" was the head of oncology. Have I mentioned yet that I don't have full confidence in my oncologist? (cough)

My primary treatment was Brachytherapy and 25 sessions of IMRT. The external radiation was done in a research academia setting. As the RO taught in the medical school, he was very upfront and explained everything. Do you know anything about the equipment and technique? I bring that up because my guy was developing tomography software for the IMRT machine. At the time, 2003, there were only five nationwide. This procedure included a rectangle water balloon to minimize scarring and to keep everything in the same location each time. It’s been 15 years and I think that this gutpybis still using the technique, but I don’t hear about it. The Gastroenterologist told me that I had very little scarring on one side only. He was amazed. Radiation is as good as the skill anfpd techniques used.

Last question, is he in academic research? You can read about my guys, Drs Brian Butler and Bin Teh. Compare and develop questions. There is nothing like a healthy discussion. Good luck.

Gourd Dancer

As I mentioned as a basis for my lack of confidence in my oncology team, NONE of information you asked was explained to me. Not the procedure, how it's going to be done, etc. The only thing they vaguely said was that they were going to use the same machine that they used to attack the tumor in my femur bone. But that was very localized. So I don't know the information you mentioned. Maybe they plan on explaining it later, but that also brings up the question "how am I supposed to make a decision about it before I know the information?" My treatment is at Stanford University, so yes, the team is in the education environment. So the only thing I know about the technique is based on when they treated the tumor in my femur, and they said "we will use the same machine". Treatment will be daily monday-friday for 7 weeks, 35 treatments.

Radiating the prostate and lymph nodes in addition to your hormone therapy should slow the progression of the tumor and give you a small chance of cure.

Did they tell you the trial number? I assume it is this trial:

clinicaltrials.gov/ct2/show...

cancer.gov/about-cancer/tre...

As you can see 458 hospitals offer this trial to their patients. I would take part in this trial.

GP24
GP24
in reply to GP24

I just assumed this could be the trial in question. It may just as well be a different one.

Maybe DaC00tie can tell us the trial number so we can see what his doctors are planning.

DaC00tie
DaC00tie
in reply to GP24

This is not the trial. Neither the oncologist nor the radiation oncologist described it as a "trial". I was not given a trial number nor was I provided with any trial information. They just explained it as the treatment they "offer". It was up to me to consent to it.

Let me rephrase, I "don't think" the trial you mentioned is it. I read the article in the link and it mentions that to be eligible that the lymph nodes must be negative or less than 1.5cm and no metastases to the bone (which is not my case).

If you had a tumor in your femur that was found and responded to radiation it is highly unlikely that there isn't more cancer outside the pelvic area which will NOT be affected by the recommended radiation. This is even more likely since the femur tumor was big enough to be identified on a scan. What type of scan was used timid the femur tumor, was it one of the newer more sensitive scans?

Pelvic adjuvant radiation can come with very significant side effects that are not reversible. Of course, you might not suffer these types of issues, but you do run the risk. The worse of these that I have seen in men that I work with is the total loss of bowl control and severe constant pain. On the other hand you might not have any lasting side effects, it's up in the air.

How high did your PSA go, you didn't share that number?

Joel

DaC00tie
DaC00tie
in reply to JoelT

Thank you Joel, my PSA peaked at 23.8 and after 30 days of bicalutamide it is now at a steady 0.4

The side effects you mentioned are exactly the ones mentioned to me by the oncologist, exactly, in addition to more that were possible.....increased incontinence, diarhea, radiation burns, complete ED.....but, the severe constant pain was not mentioned by my oncologist.

I had whole pelvic radiation with no SEs. I had very low dose per but high total ( 75 grays in 50 fractions.) you need a highly experienced RO to do this.

DaC00tie
DaC00tie
in reply to Break60

My thoughts exactly. And that does happen to be one of my concerns. At the treatment center I'm being treated at, the whole team appears to be "young". Which has pros and cons. #1 - they will be at the forefront of the latest technology.....but #2 - they lack the experience. I'm glad to hear your input being somebody that's went through it. The facility that I'm getting a second opinion at has both young and experienced doctors (I asked when I scheduled). I figure this way the young keep everybody appraised of the latest technology and treatments, and the experienced doctors are able to share their experience with the "young". A positive from both angles.

Break60
Break60
in reply to DaC00tie

Well if you can take a couple months off to go to Sarasota FL, Dr Dattoli has been doing this for many decades and so has his staff which is just as important. He only treats prostate cancer.

When my cancer progressed it was into my lymphatic system. On PET/CT I was originally diagnosed with involvement of two lymph nodes in the iliac region and I underwent surgery. They removed 46 lymph nodes and actually nine were positive. Last year I underwent additional surgery for retroperitoneal lymph nodes and had 26 removed. 14 of which were positive. Early this year I underwent CyberKnife radiation for supra-clavicular lymph node involvement. The CyberKnife treatment is an excellent modality for nodes that can be identified on PET/CT. Despite the surgery and the radiation I am currently on androgen deprivation therapy/Lupron as the disease is now systemic. I Would strongly urge that you get a second opinion. If the disease is in a few lymph nodes CyberKnife radiation is a very effective.

I wonder why your oncologist was not present. I would also what to know just how much time they think this gives. Does the treatment make you ineligible for the trial? If you are feeling unduly pressured you have a right to answers you are comfortable with before deciding. It's your life and your treatment.

DaC00tie
DaC00tie
in reply to Dash54

Those were the very questions I had. My first was about why my oncologist wasn't in attendance at this team meeting with the patient on decisions that affect my treatment. And like I said, he had mentioned a trial that I'm a good candidate for (and qualify for), yet there was no mention of it during the meeting. And like I said, once this treatment starts then it's too late to way "wait, I changed my mind"....some of the damage will already be done, and from what I understand, some of the irreversible damage.

Being pressured by any medical professional is a red flag warning to say NO. Only proceed with the treatment after you have had a 2nd and 3rd opinion, understand everything there is to know, and have 100 percent confidence in the physicians who will do the treatment that they have only your best interests in mind. The head of radiology at UNC recommended radiation treatment for my husband, and a professor of urology at UNC said it would provide no benefit but lots of side effects. Don’t ask a radiologist if you need radiation. Do your research and get recommendations from experienced urologist/oncologists.

Thank you, that's the plan I was formulating. This site is a place I go for input that doesn't have any hidden agendas.

Tell Dimitrios Colevas "GAMOTO".

Damn his picture, looks like I've got dandruff older than him.

Biography

:

Dr. A. Dimitrios Colevas is a professor of medicine (oncology) and, by courtesy, of otolaryngology - head and neck surgery at the stanford university medical center.His clinical focusus are in Cancer:Head and Neck Cancer, Oncology (Cancer), developmental therapeutics, investigational new drugs, Adverse event( toxicity) evaluation and reporting, Thyroid Cancer, combined chemotherapy and radiation treatment and Medical Oncology.

Tell him the neck that you need treated, is the neck in your pants.

MY THOUGHTS ARE TO GET A SECOND OPINION ASAP!

Good Luck and Good Health.

j-o-h-n Sunday 09/23/2018 7:54 PM EDT

DaC00tie
DaC00tie
in reply to j-o-h-n

The instant he walked into the room my mind said "Doogie Howser"!!! Seriously. And yes, I read his autobiography. Which prompts more distrust as what I have is NOT his specialty. I'm not making any shots on his intelligence or skills, but, I want somebody that specializes in what I'm dealing with.

j-o-h-n
j-o-h-n
in reply to DaC00tie

AMEN!

Good Luck and Good Health.

j-o-h-n Sunday 09/23/2018 10:29 PM EDT

It's my understanding that certain side effects from chemo ARE sometimes permanent, such as neuropathy....tingling sensation in fingers and toes....

Hey guy! This stuff makes our heads spin. Youre no different from the rest of us.. You will make the right choice for you.. I was 53 now 57. I did ADT and the the full 8 wks 5 days a wk of radiation ... You will suffer side effects. A new way of life.. I think being younger is in your favor to be able to recoup from treatments.. Now 3yrs of no signs.. so far I’ve had the best results possible.. good finding this site.. you’ll get a lot of help. Drs that dont take time to explain are many. Live healthy and find daily happiness.. With an aggressive “C” you must act accordingly. You can do better than any dismal dx. Being so young I believe that you’ll probably see some treatments coming down the pipe.. who knows .. even a cure is possible.. yo7 just need to get thru treatment and begin real recovery.. until yo7 ge5bsome good results it’s hell. A lot of prayers love and support can help. I was crying becaus3 I was young at 53.. I feel your pain.. With time things will get better.. it’s an emotional rollercoaster to get your “T” yanked out of you. You will adjust .. Diet ,exercise and stay sane and laugh more than cry. You need strong reasons to live in order to get thru to a better place. The end is not near for you.. a lot that you can do.. I felt ripped off at 53. Wasn’t ready to give up the macho ego. If you can keep a calm demeanor and can hurdle fear of death and the anger of being afflicted you will do well. I want to hear six months from now good things... You can do this brother...

Consider Proton Treatment.

Similar to the standard radiation but using protons, not photons.

A more direct and focused radiation treatment but with much less collateral damage to the bowel and badder.

California Protons in San Diego; Dr Rossi has provided me with localized treatment including bilateral illiac node treatment.

No bowel or bladder damage to me. One year out I have some edema to my legs but that could be due to Lupron or Extaxdi as well.

I have stopped both this August 1st and can update you in November when they should have worn off.

Consider a C-11 Acetate (Phoenix Molecular Imaging, Phoenix, AZ; Dr Almeida) whole body scan to see what needs to be treated. Perhaps a PSMA in San Francisco, needs a PSA >0.2.

No sense in getting radiation if chemo or Provenge is needed for a more systemic approach.

My best to you.

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