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  • Rplnd ???

    Hi Everyone

    I hope you all in good spirits... I have Q i hope you all can help me wyth... My husband.s doctor has mention that when George has finish his 4 x BEP he will probably need an operation to remove the remainder of the tumour... Since the biggy as they are callin it is on hys lymph node in hys abdomen is thys procedure called an RPLND? or is that a different thyng all together? the doctor neva referred to it as thys but on reading some of you guys threads im begining to thynk thats what it is...My hubby neva had an operation before i thynk he very wary and a little anxious... is thys a big operation and how long can we expect the recovery period afterwards? i know everyone different but just roughly?...Also someone mention to me before that they might remove the kidney that the tumour is next to... why would they do that? thanks for any info its always greatly appreciated.... my husband is home for hys 2 week rest period hys next chemo start on the 31 october for 5 days.... Does anyone else know of anyone getting piritone and hydocorazone along wyth their chemo? myhusband does but none of the other guys do? also my husbands hair has began to grow back all over hys head... its about 2 mm.... im worried he not gettin enugh of the chemo... has thys happen to anyone before.... i know i should be glad but i worry so much because my husbands cancer is little different from others... (extragonadal germ cell tumour).... Sorry for the million questions folks but im so scared.... thanks again and i hope where ever you all are the sun is shining on you :-) bless yvonne

  • #2
    Hi there,

    I notice your in Scotland. I live in London, and had my RPLND 3 weeks ago. I had all my right-sided lymph nodes removed and a 1.2 cm residual mass, which was small. Given my RPLND was straightforward I only required a 6 inch midline abdominal incision. During the surgery, your abdominal muscles are separated by cutting the fibrous tissue connecting those muscles (the abdominal muscles are not actually cut).

    If you have a larger residual mass, a larger incision may likely be required, given the surgery will me more involved. There are many guys on the forum who've had very large residual masses removed and I'm sure they'll comment. Three weeks post-RPLND I'm now doing a lot of things normally, and reckon after 5 weeks I'll be 95% back to my normal self. I'm amazed by the healing powers of the body. Pain for me wasn't a huge issue, and they did a superb job keeping mine fully under control. One week post-op I was off pain killers. The worst thing about the whole surgery for me was having the catheter removed a few days post surgery! Although a totallly common procedure, I didn't particularly like it - but it was over in a couple of seconds.

    RPLNDs are typically done for residual masses with non-seminoma tumours. I notice your husband has a seminoma tumour, and I understand they undertake a RPLND when the residual mass is large. I know there another guy on the forum who had a post-chemo RPLND for seminoma, so hope he will comment.

    I believe, the main difficulties of a post-chemo RPLND is that the tumour can encapsulate part of the kidney and major arteries/veins which are situated near the lymph nodes. Also as the tumour dies and becomes necrotic, this dead tissue adheres to healthy tissue surrounding it, making removal more difficult.

    This is a rare operation on the NHS, with only 100 surgeries completed per annum. The number of consultant surgeons undertaking this surgery in the UK I believe is 2-3. By far the most experienced is Mr. Tim Christmas, and he did mine. He operates (no pun intended!) out of the Royal Marden in London. When I had mine I was his 389th RPLND, and his second for the day. The previous guy before me had travelled from Swansea to have his done.

    Now your doctors may recommend Mr. Christmas, but if they don't I would strongly recommend you contact him. This is complex surgey, and given a large residual mass that may or may not interfer with organs/vessels, you want the best surgeon in the country, and that in the UK is Mr. Christmas. The drawback is I think you may have to travel to London for the surgery (well at least that's what the guy from Swansea had to do).

    I hope I can reassure you by saying that for me the chemo was by far the worst experience. I'd take the surgery again any day over chemo, if I had a choice. I'd never had major surgery before this and I was obviously anxious too, but I have to say the surgery was no were near as difficult as I expected. My experience was that the pain was less than I expected (and the drugs in the first few days keep it well under control), and recovery shorter than expected.

    As for hair growth, I also has a 2mm fuzz on top of my head during chemo. I also had the same thoughts over why the chemo was not affecting this hair. However, after chemo it was not this 2mm hair that started growing, but it was completely new hair that started to grow back.

    Good luck with the rest of the chemo, and if you do require further surgery, believe me, you'll be fine.

    Davie
    Diagnosed March 2006, Stage IIB, 3cm RP mass
    10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
    Prechemo bHCG-2648, AFP-582
    3xBEP March-June, markers normalised
    3 months postchemo - 1.2cm residual RP mass
    RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
    June 2009 - TRT commenced to help out my lefty
    May 2011 - check-up, all clear

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    • #3
      A post-chemo RPLND can be more difficult that one done prior to chemo. You should definitely contact an expert. It sounds like Davie has given you some good suggestions for contacts. I had this surgery in 1988, and it's not as bad as you think. It will take several months to regain all strength and recovery should not be rushed.

      Best wishes.
      Fish
      TC1
      Right I/O 4/22/1988
      RPLND 6/20/1988
      TC2
      Left I/O 9/17/2003
      Surveillance

      Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

      Comment


      • #4
        Just wanted to help ease your anxiety if I could, I am the mother of a TC survivor who went through the original orchiectomy (testicle removal) then 4 rounds BEP and then 6 weeks after underwent the RPLND. Justin's tumor make-up was different than your husbands, but I too was fearing the surgery. That is until I went against his oncologist's recommendations and sought out an expert, in fact we "interviewed" 2 surgeons before I consulted one of Lance Armstrong's oncologists who confirmed what all say on this forum "get an expert" be sure to ask how many of THESE surgeries have they done. Justin said the chemo was worse than the surgery (course he got to sleep the entire 11 hours!!) The reason for the possible kidney removal is not necessarily that the kidney is damaged by the tumor but rather the tubes, veins ect. connecting the kidney are so once they are no good then the kidney cannot be spared. Justin's tumor was a teratoma (the active cancer cells had been killed by the chemo) which is benign, but it was about 4 lbs. and football sized so there was risk of kidney removal, aorta replacement with synthetics, ect. but praise God none of those things occured, in fact they had 20 units of blood waiting and used 0! They did have to remove part of the vena cava (blood vessel) which feeds his right leg and his leg was swollen rather hugely (the scrotum swells quite large also) I know it is scary but Justin had never undergone any surgery before either. This is a great place to gather information and Jesus Christ is a great listener, He will help calm your fears. Justin's incision went from under his right armpit horizontally, then verticle down his abdomen, he healed really well, and was back to pretty normal activities within 6-8 weeks. In fact his surgery was last Nov 21 and he got married 2 1/2 months later on Feb 4! His hair (facial first) also started growing back in the middle of treatments. Pleas ask more questions if you need. Hopefully you will gain some peace from other's having gone the path before you. God Bless, Lanette ><>
        Son (21) Diag 6/29/05;non-seminoma stage II;embryonal carcinoma & teratoma; right I/O 7/1; 4 X BEP; 21.5 x 19.0 x 9.5cm abdominal mass; full bilateral RPLND 11/21/05; 8-06 right arm/hand continues to heal from paralysis due to nerve injury

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        • #5
          Hi Lanette,
          what a lovely name.... Thanx for your thread.... George is half way thru hys 3rd cycle ... he is on 4xBEP.... my doc has mentioned the operation to us but when i started to ask Q's he told me i was getting to ffar ahead of myself, first thyngs first..... I was not happy about thys but did not want to spout off as i felt my hubby could do wythout it, but i was darn angry.... We go Friday for hys out patient clinic appointment and im gonna ask some Q's then... I will keep you all posted.... For anyone reading my posts and has Dr White as their consultant i do not want you to thynk he is not a capable Doctor because i thynk he is... I believe he is very compitent in hys field but he lacks communication skills thats all...I know at docor school they dont learn thys skill its suppose to come naturlly but i guess in some folks it dont....And Lanette your right about God, he always listens and in my case he has helped.... i neva forget that... bless, Yvonne

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          • #6
            Thank you Yvonne for the compliment, I am glad you found this site much sooner than I did during my son's treatment. It is amazing that we can communicate all around the world with others going through the same thing...And yes your Dr. is SO right about getting through one thing at a time. My prayers will be with you and your husband for strength to get through the next few weeks and the 4 rounds of chemo. That is how Justin's oncologist was too, he never said we were definitely facing the RPLND, always felt Justin needed to concentrate on the chemo rounds first. Justin had some complications on the way through the chemo, and I would get really anxious, and it was only through much prayer and leaning on my Lord & Savior Jesus Christ that I got through my anxiety. He truly gave me a peace beyond any other. If you want to talk privately about any struggles you're having or just vent as a caregiver feel free to email me at [email protected]. God Bless, Lanette ><>
            Son (21) Diag 6/29/05;non-seminoma stage II;embryonal carcinoma & teratoma; right I/O 7/1; 4 X BEP; 21.5 x 19.0 x 9.5cm abdominal mass; full bilateral RPLND 11/21/05; 8-06 right arm/hand continues to heal from paralysis due to nerve injury

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