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PC spread to para-aortic lymph node-where to go for 2nd opinion-Pa.

Sawyerbrown
Posts: 7
Joined: Aug 2018

My 64 y/o husband was diagnosed with PC in May, 2018. PSA of 9.46. Gleason 7 (4 + 3) per biopsy. CT found it has spread to a lymph node in para-aortic area. Bone scan is negative for bone involvement.

We are in the S/E area of Pa. & treating with a local oncologist who has recommended ADT with bicalutamide & Lupron injections. 

We would like to seek a second opinion, &/or switch treatment to a cancer center more experienced with this specific scenario, but don't know where to go. We have considered Fox Chase in Phila.

We are also considering sending his biopsy slides to Johns Hopkins for review to assure they have been read accurately.

Any suggestions or recommendations will be greatly appreciated. We are willing to travel, if necessary, to find the best treatment. This is really scary & so very hard to know what to do. 

I am grateful to all of you who share your experiences in order to help others new to this journey.

Thank you so much for any help.

G53
Posts: 33
Joined: Jul 2018

The oncologist is recommending the standard of care, there is nothing wrong with that. I personally do not always follow the standard of care and would try to get a surgery and lymph-node dissection of the affected lymph node just to try to improve the situation. However, if there is an affected lymph node, there are usually more which are not detected yet. Therefore hormone therapy will be part of your therapy.

I cannot recommend a doctor in PA for a second opinion.

G53

Old Salt
Posts: 720
Joined: Aug 2014

Do ask for a second opinion on the biopsy samples. Johns Hopkins is the Gold standard for that. Good for you! 

You are also wise to seek advice from a center that specializes in prostate oncology. I have a feeling (!) that your local oncologist also recommended some sort of radiation because hormone treatment by itself is not curative.

Sawyerbrown
Posts: 7
Joined: Aug 2018

Old Salt

Our oncologist has not recommended any radiation, that is one of our concerns, that perhaps he is not being aggressive enough?

Can anyone direct us to a cancer center that specializes in prostate cancer of this type? From our research thus far we know there is no cure....just want to get the best treatment we can find. Thanks.

G53
Posts: 33
Joined: Jul 2018

I think it is currently not that important whether the Gleason score is 4+3 or 4+4. The lymph node in the para-aortic area is outside the pelvis and thus it means M1. Doctors say this stage cannot be cured.

Idealy one would a get a second opinion on the CT and this doctor would say: "I do not see an affected lymph node there". There are interobserver differences! It would change everything and the doctor will claim after his surgery: you are cured now.

G53

Old Salt
Posts: 720
Joined: Aug 2014

I agree that it is important to get confirmation of the involvement of the para-aortic lymph node because this will determine, to a major extent, possible treatment(s). 

My earlier comment about radiation may have been naive, but the fact of the matter is that the cancer originated in the prostate. Did the biopsy suggest possible escape routes for metastasis?

With respect to your other question, Fox Chase claims to have expertise in prostate cancer. Certainly worth looking into that facility. 

https://www.foxchase.org/clinical-care/conditions/prostate-cancer

Further away, but Memorial Sloan Kettering in NYC is world-class: 

https://www.mskcc.org/cancer-care/types/prostate

 

Sawyerbrown
Posts: 7
Joined: Aug 2018

I don't see any mention of an escape route noted on the biopsy report.

Thanks for your suggestions of cancer centers. We are leaning towards Fox Chase.

nup0k123
Posts: 2
Joined: Mar 2018

please don't panic. Pc usually grows very slowly and is treatable. I have been treated in Foxchase, which specializes in cancer treatment. Their service is excellent.

Sawyerbrown
Posts: 7
Joined: Aug 2018

Thanks so much for the encouragement & confirming your good experience at Fox Chase. That is probably where we are headed.

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

S.

Welcome to the board. I think you are doing well in trying to obtain second opinions from due experts.

I do not know if you have already started ADT as suggested by your local oncologist but if you have done so, this will not disturb other treatments that may be recommended by other doctors at your newer facilities. The only minor effect is that ADT masks the PSA making this unreliable for judging cure or progression after involvement of a radical (surgery or radiation). ADT and chemo are in fact common therapies when the case is thought to be metastatic (not localized).

To that extent, I do understand your oncologist logic in recommending ADT because the paraaortic lymph nodes are just at the border of what one considers a “localized” case. In other words it is usually imagined as a lymph node belonging to the area classified as “far metastases”, to which cases radicals are not the prime therapy. The traditional lymph nodes judged localized are the ones at the iliac, inguinal and femoral areas.
However, I wonder why is the oncologist so sure that the lymph node identified by the CT scan is in fact affected by cancer. It could be a lymphedema case due to infection.

The Gleason rate 4 (prime number in the score 7) is usually aggressive and turns the intermediate case into high risk for metastases. This finding could lead to believe that other lymph nodes are also affected but were not detected in the CT. I would like to know what is described in the biopsy’s pathologist report. Can you share the contents here?

Treatments are chosen according to the clinical stage judged by the oncologist. He will provide it based on the results of the biopsy (number and location of positive cores), the result of a DRE and image studies. The best is a PET PSMA exam or at least a multi parametric MRI to locate the bandit.
I hope the second opinions provides with more information on his case so that you get a better a due clinical stage to advance with a definite treatment instead of a palliative approach.

Here are links that may help you understand the matters of PCa;

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

 

Best wishes and luck.

VGama

Sawyerbrown
Posts: 7
Joined: Aug 2018

Thanks so much for the welcome & your input.

We were told that the biopsy taken from the affected lymph node was positive for prostate cancer.

 

The pathologists report from the biopsy done on 6/5/18:

1- left lateral base, negative for malignancy

2- left base, adenocarcinoma, Gleason score 4+3=7 involving approximately 50% of total biopsy

3- left lateral mid, adenocarcinoma, Gleason score 3 +3=6 involving approximately 25% of total biopsy

4- left mid, adenocarcinoma, Gleason score 3+3=6, involving 1 % of core biopsy

5- left lateral apex, adenocarcinoma Gleason score 3+3=6, involving approximately 7% of total biopsy

6- left apex, negative for malignancy

7- right lateral base, atypical small acinar proliferation, suspicious for carcinoma

8- right base, adenocarcinoma. Gleason score 3+4=7, involving approximately 5 % of total biopsy

9- right lateral mid, prostate parenchyma,negative for malignancy

10- right mid, atypical small acinar proliferation, favoring benign

11 - right lateral apex, prostatic parenchyma, negative for malignency

12- right apex, prostatic parenchyma, negative for malignency

He has started ADT, with Casodex & an injection of Firmagon, is scheduled for Lupron 8/30.

In a visit yesterday our oncologist advised he will also start him on Zytiga,  with prednisone, which we were hoping he would do.

He recommended Thomas Jefferson University Hospital as a source for 2nd opinion. Any experience with them?

 

Thank you so much for taking the time to respond & sharing your thoughts.

Sawyerbrown
Posts: 7
Joined: Aug 2018

Forgot to add.....we asked about a PET Scan & were told he does not fit the protocol at this time, that it still isn't being done routinely in U.S. However, I have seen where others are getting them, so don't know quite how to take this explanation.

Old Salt
Posts: 720
Joined: Aug 2014

You wrote that the suspect para-aortic lymph node was biopsied. Is that correct; or in other words, was there a second biopsy?

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

S,

Thanks for sharing the details. I am sorry to say that the situation seams not good. According to the data, they got 5 positive cores out of 12, mostly in the left lobe. The base (just under the bladder) is affected all around. The apex seems free of trouble. The suspicious lymph node was also checked by the pathologist and found with PCa.

The above together with the Gleason score 4+3 sets your husband's case in the high risk group and the positive lymph node confirms metastatic disease. If all these are verified in your second opinion, radical approaches could be recommended but their meaning would be for lowering the burden of the cancer, debulking its bigger tumor (the whole gland). ADT and chemo would be preferred to try holding the bandit from advancing further.

In any case, the affected lymph node probably has been whole dissected for analysis freeing the condition of metastasis, if other lymph nodes are found to be negative. You could try checking the issue with a whole body PET 68Ga-PSMA exam that would be more precise in identifying PCa in other lymph nodes and soft tissues. Your oncologist response to your inquire regarding this exam got its logic because most patients do the PET with the intent of defining a treatment protocol. Rarely the exam is used as a screening tool. It is expensive (2 to 3K $) and not covered by most insurances. Other PET exams exist but they are not specific to PCa. They cover several cancers confusing the diagnosis and its results.

I would recommend you to discuss the matter in your next consultations. You can request for a doctor that would give you the referral for the test. Prepare a List of Question for your meetings and take notes (or record) of what doctors tell you. Here are ideas:

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

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

Survivors in this forum are not doctors but can help you understanding the matters based on their experiences. Just inquire and provide details for us to opinion.

Best wishes in this difficult journey.

VG

and incorpore questions like

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Sawyer, I agree with pretty much everything replied to you above.  Vasco gave two excellent overall assessments.

There are perhaps "various ways" to interpret anything, but the most overt and straightforward is usually best, pending strong objective, factual reasons to do otherwise.

The putative, overt situation in your husband's case is that he has metastasis, fairly far afield.  It is hard to imagine what further testing could do to reverse that, especially given that CT and PET scans give, many, many false negatives to every true positive that they detect.  I agree witht the doctor that a PET for him would be a waste of time and effort. I also agree with the comment that radiation would be ill-advised.  The problem with radiation in a situation like this is where do you radiate ?  It becomes a guessing game and random, and with the potential side-effects of radiation, probably counterproductive.

The HT plan of attact seems sound and reasonable to me, as most others have agreed.

It is a good idea to get further assessments  from other professionls, especially now, early in his treatment course.

HT is often highly effective, with dramatic extension of life, and with overall good quality of life.

max

G53
Posts: 33
Joined: Jul 2018

If you get a second opinion, this doctor has to accept the fact that there is a positive lymphnode. In this case his recommendation will be about the same as your urologist provided.

I do not understand when the biopsy of the lymph node was done. If it was detected using the CT, it was detected after the prostate biopsy. Usually nobody will make a CT scan before the biopsy since you do not know yet if there is any cancer at all. So a second biopsy just to get tissue from this lymph node was required. Has that been done? I do not think so.

I recommend to make the PSMA PET/CT just to make sure that you get the right treatment done. It will show most of the metastases, if there are any, and the cancer in the prostate. It will clarify if this lymph node was properly diagnosed. It is an investment but you try to extend your life.

G53

G53
Posts: 33
Joined: Jul 2018

I enclose a picture so you can see where the para-aortic lymph nodes are. As you can see, they are quite a distance away from the prostate. Usually lymph nodes close to the prostate are affected at first, not a single lymph node far away from it.

Lymph nodes

Sawyerbrown
Posts: 7
Joined: Aug 2018

He first had the prostate biopsy which showed the cancer. Before they decided on treatment ( gave us the option of surgery,or radiation) they ordered the CT to check for any spread to other areas. They did not expect to find what they unfortunately found.

The enlarged lymph node in the para-aortic area was biopsied & found to be prostate cancer. We've been told this is an unusual place for it to migrate to.

G53
Posts: 33
Joined: Jul 2018

Then the affected lymph node is verified. I think the second opinion will also recommend treating with ADT using bicalutamide & Lupron injections.

As an alternative you may want to ask for this clinical trial at Sidney Kimmel Cancer Center at Thomas Jefferson University, Philadelphia, which will provide the very latest therapy in research:
https://clinicaltrials.gov/ct2/show/NCT03477864?term=oligometastatic&con...
This is trial is about to start end of this year.

G53

Old Salt
Posts: 720
Joined: Aug 2014

Thanks for clarifying the presence of cancer in the lymph node. This makes the whole situation much more serious, but you already knew that. 

I have read that a fairly recent trial has shown that early taxotere (docetaxel) may be helpful when there is metastasis. But I am by no means saying that this would be advantageous for your husband. I am just suggesting to bring this up with the expert people that you are going to see.

G53
Posts: 33
Joined: Jul 2018

Adding taxotere when beginning with ADT did only show a benefit if there were bone metastastes detected. Sawyer mentioned the results of the bone scan were negative, i.e. no metastases detected. If there are no bone metastases there is no need for a Chemo. Some doctors may still recommend it since they heard so much about this combination.

I would look into the trial I mentioned above. This treatment has a curative intent while ADT will just control the tumor for hopefully many years from now.

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