Lymphedema after RALP

User

Posted 08 Jul 2024 at 21:17

I have been reading about all the side effects of incontinence and ED after RALP but not much about swelling in legs after a RALP with lymph node dissection.

My background: Age: turning 71 in Sept, My RALP Surgery scheduled mid August, nerve sparring estimated 100% one side 75% other side

Biopsy early Feb. 24, 5 Gleason 6 cores 3+3, one Gleason 7 core 3+4, and one Gleason 8 core 4+4 10% involvement. (All scores confirmed second opinion John Hopkins) Due to just one core Gleason 8 , cancer is considered Gleason 8 higher grade.

PSA Density .16, considered elevated if over .15. Prostate size 4.3x3.0x3.0, PSA Volume 21cc

PSMA Pet early March showed mild uptake 3.1 and 3.6 on each side of Prostate, nothing else showing in lymph nodes or organs.

Decipher testing early April came 60, right on border of intermediate and high. 61 would have been high so it does track towards the Gleason 8. Also in October 2023, an ExoDx Urine test came back 69, with the cutoff for likely not needing a biopsy yet 15, so another indication of a higher grade.

Surgeon says due to my small prostate surgery good choice. He said although PSMA Pet shows nothing in lymph nodes, microscopic levels don’t show and important to pull multiple nodes during surgery and send them for immediate pathology with results back during surgery.

Has anyone had experience with side effects of lymphedema after lymph node dissection during RALP.

Thanks Ned

User

Posted 08 Jul 2024 at 22:22

Hi Ned

I can’t help you with this yet, as my surgery is next week. However, they are taking my pelvic lymph nodes as well, so I will be happy to keep you updated as to how it goes if that’s any use?

Good luck in August.

Ian.

User

Posted 09 Jul 2024 at 00:06

Ian,

Thanks and best of luck to you also next week. That is just around the corner. These robotic procedures certainly appear routine today. I remember years and years ago first reading of robotic surgeries and I always thought no thanks. My surgeon says it will be a single port entry as opposed to the typical three. More progress. I will appreciate hearing of your updates.

Thanks

Ned

User

Posted 09 Jul 2024 at 06:57

Hi Ned

my OH had had surgery in Jujy 23 with extensive lymph node removal. I raised the possibility of lymphodema with the surgeon and was dismissed out of hand. Approx 6 months later he developed mild lymphodema in his left leg. He now wears a surgical stocking. Its manageable provided it doesn't get worse. Had a referral to a lymphodema clinic in Feb of this year- still waiting for an appointment. He's had BCR and is in the middle of RT so am hoping it doesn't make it worse.
but most men don't seem to have problems so you’d be very unlucky im sure if you got it. Good luck kate

User

Posted 09 Jul 2024 at 08:50

Hi Ned.

I had robotic surgery and 9 lymph nodes removed. I've had no problems. 👍

Edited by member 09 Jul 2024 at 08:59 | Reason: Typo.

User

Posted 09 Jul 2024 at 14:40

Kate,

Thank you for your response. I am sorry to hear of your O/H’s BCR. I hope the radiation takes care of it. to hear that he does have some swelling I am also sorry to hear of the swelling bit glad that you consider it manageable . Maybe it is not that often as don’t hear alot of it as issues on this board, but then such a long wait to get an appointment to the clinic makes you wonder if it is so busy with these issues.

Thank you.

Ned

User

Posted 09 Jul 2024 at 14:41

Hi Adrian,

That is very encouraging to hear. Thank you.

Ned

User

Posted 09 Jul 2024 at 17:12

Sometimes they'll take the lymph nodes directly draining the prostate for testing. That wouldn't normally cause any problems.

If more extensive pelvic lymph node dissection is foreseen, that would be a good reason to consider a different treatment. Of course, there is always the chance it's only found to be necessary during the operation and wasn't foreseen beforehand.

User

Posted 09 Jul 2024 at 17:50

Thanks Andy,

i have a follow up appointment with the Surgeon on July 19th since my initial consultation and decision to move forward with the Surgery. I definitely have some additional detailed questions but seem to be on this track now for surgery. It is positive not alot of comments regarding the issue on here. I did read this can even occur with radiation. Being a higher grade looks like the nodal dissection is pretty standard.

Thanks Ned

User

Posted 09 Jul 2024 at 21:08

Hi Ned. My surgery included extensive lymphadenectomy (34 in total). The subsequent histology revealed that one node contained cancer. After surgery I developed a lymphocele which had to be drained. I had no problems with lymphoedema post surgery but it started in my right leg after salvage radiotherapy 7 months later. That seems to have been the combined result of the surgery and the SRT. I wear a full length compression stocking which keeps it under control. It doesn't cause me much of a problem except in hot weather. Lymphoedema is a risk with this kind of treatment but but it is the luck of the draw. Most seem to avoid it. It is something to think about though when considering you options. good luck Chris

User

Posted 09 Jul 2024 at 23:26

Chris,

Thank you for sharing. How old were you at your surgery? Were you scheduled for your salvage therapy due to the one node? It’s frustrating because I have chosen surgery to what I thought was avoiding radiation for quite some time if it came back, since its general consensus its more difficult to do it in reverse, Radiation then salvage Surgery, although can be done. However at my age coming up on 71, I can still do the surgery with my health, but it’s possible after Radiation in 3 years my health could be worse and due to age snd health it would preclude Salvage surgery. I just did not realize with my higher grade it was maybe necessary right away. I did read a study where going ahead with adjuvant treatment immediately or waiting until something showed then being treated might not make any real long term difference in life expectancy. Its a road I might choose after recovery and say no thanks lets wait.

User

Posted 10 Jul 2024 at 20:15

Ned. If you have a look at my bio it should answer your questions. I'm not sure what your staging is but with mine being T3b, so the cat was out of the bag so to speak. I didn't have a PSMA PET scan prior to surgery but the surgeon's view was that there is a strong possibility the cancer has reached the pelvic lymph nodes. His intention was to harvest what he could find. He was also talking about possible adjunct radiotherapy after surgery depending on what the hystology revealed (as you will see from the bio that didn't happen. I am not aware of anyone who has had adjunct radiotherapy but it does seem to me like a shot in the dark. Surely it is better to wait for a rising PSA then try to pinpoint the cancer with a scan. Chris

User

Posted 10 Jul 2024 at 22:10

Chris,

Quite a journey. I would have been scared xxxx out of my mind a half dozen times. I am more on the hypochondriac side. My staging is IIC, cT1c NOMO.
I only had one core Gleason 8 (4+4) less than 10%. The other 6 cores were favorable. One Gleason 7 favorable (3+4) and remaining Gleason 6. All the Dr’s just describe it as aggressive because its in the Gleason 8,9 and 10 category, although I read one Doctor say where all Gleason 8’s are not the same. One Gleason 8 core is not like having 8 Gleason 8 cores. I think with my biopsy and other imaging and intermediate Decipher all suggest less aggressive Gleason 8. I would like them to look at me in that mind set and maybe they would skip node dissection. The problem is protocols and I wonder if ethically although I ask it is not considered standard of care for Gleason 8. I am staged with no node involvement but the surgeon worries about microscopic infiltration not picked up by the PSMA Pet. My feeling lets just trust the Pet.

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