1 week post RALP

fiddlecanoe said...
Reminds me of a story a friend told me. She had some kind of significant surgery. The doctor told her that she should/would be "up and about in 24 hours." At 36 hours post-surgery she wasn't feeling too good, but taking the doctor's advice to heart, she went to a work-related meeting. She felt awful and was white like a ghost. She wondered why she was such a wimp that she wasn't doing better. When she saw the doctor next she related the foregoing and asked why her recovery was so slow. The doctor said: "When I said you would be up and about, I meant that you would be able to go to the bathroom." Moral of the story: You have had major surgery and will be weak and tired for a considerable period. Don't fight it! Walk, but don't wear yourself out. (Actually, it will be really easy to weat yourself out.) If you feel weak as a limp rag, just lie down and rest!

Hmm, major surgery with no discharge instructions, what to expect, when to plan a return to work and full activities. Who was remiss here? Hint: it wasn't the patient.

Djin

I used to nap all the time but had given them up. I'm feeling pretty good still and the temptation is to do more than I should. I'm trying to take it easy, relax and enjoy this time at home. I have a 15-year-old at home with me most of this week due to the snowy weather we've had so I'm not alone. She helps out between her online remote learning classes when needed.

Halbert mentioned night sweats and hot flashes. Hadn't heard that might be a possibility anywhere.

Guitar - I think any night sweats or hot flashes would be related to the surgery anesthesia and/or opioid narcotics post-op and would be during the first week. I did not take opioids but it took a few days for the anesthesia to work through my system. The gas pains and bladder/colon spasm pains took a few days to resolve as well. There are meds for bladder spasms if they remain an issue.

I caution that abdominal surgery does not resolve itself in a week and then back to normal although you are a "youngster" so you may heal up quicker. I recently had robot assisted inguinal surgery which was like a mini version of my RALP. I felt fine right after surgery then went downhill for a few days then slowly recovered. Took about 6 weeks then I was back to normal other than still being cautioned about lifting heavy things for a few more weeks.

RALP, on the other hand, took much longer to feel right for me. The peeing concerns are obvious but various aches and pains continued for some time. I did a trip out west for a week at about 4 months and I was feeling pretty good but not 100% so 3 months is probably a good recovery point (you get a PSA then as well) and 6 months is probably closer to 100% (ART delayed that for me a few months). Still don't know when 100% is as I would assume I would forget about surgery and PCa at that point which seems to still elude me.

You are doing fine. Stay the course and think about your recovery like you are trying to keep from causing a hernia after surgery. You may feel better but the internal healing takes much longer than the ports healing over.

Thank you GuitarHunter These postings are very helpful. We are all different age's (I am 68) and in different physical shape and our degree of health varies but your post's are helpful.

I am sure of the old adage that time heals all wounds. "Give time-time" is not my strong suit. You seem to be doing very well and that is uplifting to those who have not yet had surgery.

Glen

I think the trick with the kegels is not to hold your breath. You breath as normal as you 'hold' the muscles. I do the first five 'holds' for 5 seconds each, then gradually extend it out to 10 or more seconds for each hold. I do mine lying down but when starting off I was told as well to do the exercise while siting down and getting up from a chair in the one motion. ie Start the kegel exercise sitting down, while then getting up remembering to breath normally.

If you're not sure you're doing it right, there's physios around who have an ultrasound and can 'see' on the ultrasound if you're doing it right and give suggestions. My hospital had a guy who specialised in doing this.

GH - What was your first thought when slapshot mentioned "cycling"? That was not on my wish list of things to do for a couple of months. Since it was winter, first time on a exercise bike told me that some butt training was in order so went to the elliptical machine for exercise instead and worry about biking later.

Some of your history is familiar. My physical shape went downhill a bit after my two boys went to college some 18 years ago. It was not that I wasn't doing anything but work came first (had to pay for some college) and slowly preparing for retirement. I am 5'-11" and was around 205 lbs when I retired and about 190 lbs when I had surgery 5 months later. I am around 175 now two years later, sometimes around 170 lbs. My doctor says I should be a little less per my BMI and I glare at him. My wife thinks I am too thin already so I think I will stay where I am at.

Now is the time to think positive about the rest of your life. Your doctor will tell you that you should be under 200 lbs so that should be your rough target. I am now at the weight I left high school which I never thought I would see again (quite a bit of muscle loss in the process though, stud -> spud). Just a matter of putting your mind to it for a long time.

The night time peeing takes time. Part of it is mental and the other part is really having to go. I still get up once per night, sometimes twice depending on fluid intake. If it is near time to get up, I just roll over and grab some more sleep. If it is middle of night, I usually get up and get it over with. Another issue is you have to stretch your bladder out again after surgery and the catheter time. Takes a while before you feel like you can allow the pressure to build up and hold it but that is what you are going for in the next 6 months, not tomorrow. Good luck

GH,

I'm sure you'll get your post-op path report at your video visit this week. Do ask to be sent copy of the complete report. It's an important document, which will give you the most detailed info you'll have about your PCa and its extent.

Chin up!

Djin

I have my follow-up with the surgeon tomorrow and I'm putting together a list of questions. Are there any suggestions for questions I should ask him tomorrow?

Ask for a scrip for low dose cialis. It helps get the blood flowing better in your pelvis which is good for overall healing....and it may create a surprising result too

Thanks for all the suggestions. I've added them to my list. If there are others, please let me know.

Here's my pathology results as posted on their mychart site. Results were not as good as I hoped but maybe not as bad as they could have been.

Right now I have a PSA check scheduled for 3/30/21 and a follow-up with the surgeon the following week. He wants to check to see where the PSA is and possibly then recommend salvage radiation.

Specimens:
A) - SURG PATH, left pelvic lymph nodes
B) - SURG PATH, right pelvic lymph nodes
C) - SURG PATH, Anterior prostatic fat
D) - SURG PATH, prostate and seminal vesicles, stitch at capsule tear
Clinical History
Preop Diagnosis: Malignant neoplasm of prostate. Medical History: Elevated PSA.
Pathologic Diagnosis
A. Lymph nodes, left pelvic, dissection:
No evidence of neoplasia in 8 lymph nodes

B. Lymph nodes, right pelvic, dissection:
No evidence of neoplasia in 14 lymph nodes

C. Lymph node, anterior prostate, excision:
Fibroadipose tissue, negative for neoplasia

D. Prostate and seminal vesicles, robotic radical prostatectomy:
Prostatic adenocarcinoma, Gleason score 4+3=7 (see synoptic report)

SYNOPTIC REPORT FOR CARCINOMA OF THE PROSTATE:
Procedure: RADICAL PROSTATECTOMY
Histologic type: ACINAR
Gleason score: 4+3=7
Grade group (1-5): 3
% pattern 4 in Gleason 3+4=7 (na=not applicable): NA
% tumor: 16

Tumor extent (n=no, y=yes, na=not applicable):
Extraprostatic extension (f=focal, m=multifocal): mM
location of extraprostatic extension: RIGHT ANTERIOR MID, LEFT ANTERIOR MID
Microscopic invasion of bladder neck: N
Seminal vesicle muscle wall invasion: N

Margins (n=negative, p=positive, na=not applicable): P
Distance of tumor to closest margin (cm): NA
Longest contiguous positive margin (cm): 0.05 CM
Positive margin location (apex, bladder neck, mid): LEFT ANTERIOR MID, LEFT APEX

Regional lymph nodes (na=not applicable):
Number examined: 22
Number positive: 0

Additional findings (lymphovascular invasion, therapy effect): NONE
pTNM: pT3a N0
Comments: NONE

Grade Group Definitions
1=Gleason 5-6, 2=Gleason 3+4=7; 3=Gleason 4+3=7, 4=Gleason 8; 5=Gleason 9-10

Pathologic Staging Definitions (pTNM)
Primary Tumor (pT)
pT2: Organ confined
pT3a: Extraprostatic extension (focal is <1 high power field in 1-2 slides, multifocal is more) or
Microscopic invasion of bladder neck (in thick muscle, no adjacent non-neoplastic glands)
pT3b: Seminal vesicle muscle wall invasion
pT4: Invasion of external sphincter, rectum, bladder, levator muscles or pelvic wall
Regional Lymph Nodes (pN)
(periprostatic, pelvic, hypogastric, obturator, fossa of Marcille, internal iliac, external iliac, sacral)
pNX: Cannot be assessed
pN0: No regional lymph node metastasis
pN1: Regional lymph node metastasis
Distant Metastasis (pM)
pM1a: Metastasis in non-regional lymph node (ex: aortic, common iliac, caval, deep inguinal, superficial inguinal, retroperitoneal)
pM1b: Metastasis in bone
pM1c: Metastasis in other distant site

The above synoptic report complies, in slightly modified form, with the guidelines of the College of American Pathologists and the Association of Directors of Anatomic and Surgical Pathology for the reporting of cancer specimens


Microscopic Description
A microscopic examination was performed.
Gross Description
The specimens are received in four properly labeled containers with the patient's name and accession number.

A. The specimen is designated "left pelvic lymph nodes" and consists of a 6.9 x 4.9 x 2.4 cm aggregate of tan-yellow, lobulated fibroadipose tissue. Dissecting the tissue reveals eight possible lymph nodes ranging from 0.3 cm to 4.6 cm in greatest dimension. Four of the lymph nodes are sectioned to reveal tan-grey to grey-brown, partially fat-replaced cut surfaces with no distinct lesions identified. The lymph nodes are entirely submitted. RS 6

Summary of Cassettes: A1, four whole lymph nodes; A2-A4, each contains one bisected lymph node; A5-A6, one serially sectioned lymph node

B. The specimen is designated "right pelvic lymph nodes" and consists of a 7.0 x 6.1 x 2.1 cm aggregate of tan-yellow, lobulated fibroadipose tissue. Dissecting the tissue reveals fourteen possible lymph nodes ranging from 0.3 cm to 3.5 cm in greatest dimension. Five of the lymph nodes are sectioned to reveal tan-grey, rubbery, partially fat-replaced cut surfaces with no distinct lesions identified. The lymph nodes are entirely submitted. RS 9

Summary of Cassettes: B1, six whole lymph nodes; B2, three whole lymph nodes; B3-B4, each contains one bisected lymph node; B5, one trisected lymph node; B6-B7, one bisected lymph node; B8-B9, one serially sectioned lymph node

C. The specimen is designated "anterior prostatic fat" and consists of a 4.0 x 2.6 x 1.4 cm aggregate of tan-yellow, lobulated fibroadipose tissue. Dissecting the tissue reveals one possible lymph node measuring 0.9 x 0.7 x 0.5 cm. The lymph node is bisected to reveal grey-brown, homogeneous cut surfaces with no distinct lesions identified. RS 1

Summary of Cassettes: C1, one bisected lymph node

D. The specimen is designated "prostate and seminal vesicles, stitch at capsule tear" and consists of a 48.89 gram radical prostatectomy. The prostate measures 4.8 (right to left) x 4.8 (anterior to posterior) x 3.6 cm (apex to base). The right vas deferens measures 3.4 cm in length x 0.5 cm in average diameter. The left vas deferens measures 2.3 cm in length x 0.5 cm in average diameter. The right seminal vesicle measures 4.2 x 1.5 x 0.8 cm. The left seminal vesicle measures 4.5 x 1.6 x 0.9 cm. The external surface of the prostate is grey-brown, predominantly smooth and is remarkable for a 1.5 x 1.0 cm surgical disruption of the capsule which has been previously stitched back together. The disruption is located at the left posterior base and is inked orange. The remainder of the specimen is inked as follows: Right anterior lateral = blue, left anterior lateral = black, posterior = yellow. The apex and base margins are shaved and perpendicularly sectioned. The remainder of the prostate is serially sectioned from apex to base to reveal a pale tan-orange, ill-defined mass located in the central anterior apex and mid prostate that measures 1.3 x 1.0 x 0.8 cm. The mass is 0.3 cm from the right anterior lateral margin, 0.2 cm from the left anterior lateral margin, and 2.2 cm from the posterior margin. No extracapsular extension or seminal vesicle invasion is identified. The remaining prostatic parenchyma is pale tan, rubbery and slightly nodular with no additional lesions identified. The entire prostate gland is submitted for histologic examination in whole mount cassettes. (TP) RS 9

Summary of Cassettes: D1, apex margin with mass, perpendicular; D2, base margin, perpendicular; D3, cross section of right and left seminal vesicles/vasa deferentia; D4-D9, remainder of prostate gland sequentially submitted from apex to base (yellow ink partially missing in D6; right parenchyma partially missing in D9 -- in adjacent section in D8)

Thanks for posting your pathology. While it's not exactly what you'd hope for--the 4+3 is concerning and bumps you up to high-intermediate risk--it's still worth being optimistic. As Djin says, the key now is your 3 month PSA. There is a high possibility that you'll come back with a non-detectable PSA. If you do, it's likely that you'll get on an every 3 month schedule for PSA for a while. Like at least 2-3 years, if not 5. Then, it's a matter of keeping an eye on it.

If you come back with a low but detectable PSA, then it's probable that you'll be sent to see a Radiation Oncologist, who will give you a few zaps to wipe out what's left in your pelvis. They may also give you a short term course of ADT (Lupron).

It might not hurt to make contact with a Radiation Oncologist and ask them to review your history and pathology and get an opinion. They won't do anything until after the 3 month mark anyway to give you time to heal. It may not be necessary, but it's not a bad idea to be in their system. I'd also agree with Djin about having the genomic testing done, to see what is there.

Otherwise, there are points of hope--the negative lymph nodes are great news. The EPE, by itself is of concern--but it also suggests that your margins (how much they took out past the capsule) are clear or almost clear, again, a positive indication.

Now the waiting begins. Keep healing, don't overdo. Get used to the idea that you're in for regular blood work for a while, and accept that some anxiety is going to be a routine for the few days before and after every blood draw.

GH - Must have forgot to mention "passing gas" which brings up the "never trust a fart" theory for those post treatment. You probably appreciate that theory now

Your margin pathology descriptions is a tad confusing and complicated by the stitched up incision which is a breach of the margin also although done and caught by the surgeon. I think it is clear that you had EPE and positive margin as additional risk factors though.

I think you should suggest that the Decipher genomic test should be ordered by surgeon from the pathologist and then consider having the pathology slides sent to J. Hopkins for second opinion review. Your urologist should be able to arrange that as well although pathology called me for the instructions after doctor asked them to do it.

http://pathology.jhu.edu/department/services/secondopinion.cfm

One thing missing from the pathology report is what the Gleason score is at the positive margins. This also can be helpful when making decisions in a couple of months when you get your 3 month results. Dr. Epstein's group will note that and will also help confirm the diagnosis so you can proceed with a full deck of information at your next visit.

When I was in your shoes, I was thinking if my PSA was undetectable at 3 months that I would just go with the testing every 3 months and react from there with salvage radiation if and when needed. However, my Decipher test came back ok but my 2nd opinion went high risk so I decided to go with preemptive adjuvant radiation at 5 months when I was healed up based on all the information I could find. It was my decision and the doctors were little help in making that decision other than agreeing with it after I made it.