APS and Clear Cell Renal Cell Carcinoma - Partial Nephrectomy

[myarabella]

Hello friends witg APS- Have any of you been diagnosed with Clear Cell Renal Cell Carcinoma? A tumor was found, randomly, when I had a screening for pain. Two weeks ago I had major surgery to remove the tumor in my kidney. It was 2 inches(4.9cm) in diameter and it was taken out while through robotic surgery. The pathology revealed ccRCC as noted above. My prognosis is good due to the surgeon getting clean margins, but I will not knownif I am cancer free or not for 18 months of scans. ccRCC is one of the most common forms of kidney cancer, but it is very aggressive. When it spreads it usually goes tonthe lungs. Hopefully, this will not be my future. Post surgical protocol is Lovenox for 30 days. I took it when I was pregnant, for 8 months. The shots are hideously painful on top of the 5 incisions in my abdomen. This partial nephrectomy is the most painful surgery I have ever had. While I hope this situation and diagnosis does not resonate with any of you. I am interested if anyone has experienced this?

[lupus-support1 Administrator]

I wish you a speedy and complete recovery.

With good wishes,

Ros

[Tomcat]

I can't believe I've just read your comment, I was diagnosed with RCC in February this year after having an MRI the previous year on my back due to crippling pain I'd been having in my right leg. I received a call out of the blue off a Dr explaining that he'd seen my MRI results and didn't like the look of my kidneys, he asked me to go for a CT scan which is when they diagnosed me with RCC. I had a radical nephrectomy in March and had my left kidney removed also via robotic surgery, the mass attached to it was 9cm and it had also attached itself to the muscle around my chest, they also said I had a small (12mm) mass on my right kidney which I have to go back to have checked in six months. I was told mine was clear also however part of the mass burst inside me during the removal which does not bode well in my opinion.

[myarabella in reply to Tomcat]

Oh my gosh. I am just seeing your response. I think we need to talk via private message. What part of the world are you in? I am in California.

[Tomcat in reply to myarabella]

I’m in the UK! Feel free to message me

[MaryF Administrator]

I have not had this, I had a different sort of growth on my kidney, I hope you can get a really good result over the next month and become completely well re the growth on kidney etc. MaryF

[Ozchick in reply to MaryF]

Does your Haem give you regular blood tests, now that you're on Clexane, to check for antiXa levels and also kidney function? I have these every three months and have dosage adjusted (been stable with no issues for over a year now)

[myarabella in reply to Ozchick]

Do/did you have kidney cancer? I am curious to learn more.

[Ozchick in reply to myarabella]

No, but my Haem told me that too much Clexane can cause kidney function to fail so he just keeps an eye with anti factor Xa and FBC's. As I'm on Clexane forever he keeps a check.

[MaryF Administrator in reply to Ozchick]

Not on Clexane, so not relevant to me, I hope you get the answers you need from your consultant. MaryF

[myarabella in reply to Ozchick]

Hi! I am onlybtaking Lovenox for 30 days post operatively. I have 2 of 3 APS markers so my case is not as severe as some. I have plently of other competing issues though that make my APS so complocated. My Hematologist said I don't need testing with a 30 day dose. I would be curious what others on the forum think of that.

[KellyInTexas Administrator]

I’m so sorry to hear this- No I’ve no experience with this, and I’m feeling very fortunate for this after reading your struggles.

The next 17.5 months will be a worry, and I which you courage and solace, and it goes without saying, the best possible outcome.

I can try to help you in the mean time find relief re: your lovenox/ enoxaparin injections.

I’ve been switched to them exclusively now every 12 hours ( 1 mg per kg of body weight is the formula for APS patients) .

You can inject in the fatty areas off to the sides of your thighs. (Saddle bags). This will give you a few more “landing strips” as I call them. Pinch up an inch of fat - It can sting a little more than belly fat. Remember to go very slow - so you don’t get knots. Stay still for 5 min after- moving muscles can cause bruising / granulatomas. ( knots.)

[myarabella in reply to KellyInTexas]

Thank you for the injection tips. Much appreciated. I finally had to take the injections over from the nurses in the hospital because they just shove the needle in and plunge in the medication leaving me with horrible knots and bruising. I took Lovenox for 8 months while pregnant and it was better than after the surgery because I had so much more surface space on my stomach. Half of my stomack is unavailable for shots due to the five incisions on the left side, leaving me with only the right side. I have a small stomach so it is already limited. I will try my legs, but missing the fat that makes itnso much easier. I hope you are well and appreciate the time you took to reply.

[HollyHeski Administrator]

Oh I feel for you, I have not experienced anything like what you are going through, I really wish you a speedy recovery.Re injections, I have been on heparin for over 20 years, I've tried arms and legs but for me not successful and take ages to heal. You can try going round the back, above and below belly button but don't go too near.

Wise choice doing yourself, you will get there.

All my love xx

[fresa_v]

I’m so sorry to hear that. I’ve only had a history of using lovenox after a hysterectomy. I can’t imagine the pain you’re going through but hang in there. Well wishes and speedy recovery to you. Keep us updated <3

[Bloodredroses]

Good luck🙏🏻🙏🏻

[Bluebell999]

I had RCC diagnosed after severe pain in my back and side 12 years ago. My tumour was 3.9cms which they said was fortunate as if it reached 4cms I would have to have a partial nephrectomy.

I had cryotherapy, which is where very fine needles are put through the skin into the tumour from the back and frozen which kills the tumour. This is done twice at the same time. I had a GA but there is no wound or bleeding and only had a night stay in hospital.

Unfortunately or maybe fortunately the tumour had gone past the 3.9cms and the procedure had to be done again to mop up the bits of tumour missed. Still better than a nephrectomy but I was very cross at the time as both of the procedures were painful afterwards.

I had a three month ct scan, then 6 months and then yearly until 5 years have passed.

Touch wood it has not returned, although there is the thought at the back of my mind that it could do. I think most people who have had cancer will always wonder about it coming back, I think it is natural to worry about it.

The cryotherapy is often used for men with prostrate cancer, but my kidney one was still in the experimental stage. I was told at the time that only two hospitals did this procedure on RCC in the UK. I don't know if more hospitals are taking it up or whether the fact that I had to have the second procedure was a common thing, and cryotherapy was found not to be suitable for RCC.

My thoughts are with you. It is a very worrying time and will be until you feel confident that you have been clear for some months or even years.

I had Grade 2, which was quite aggressive, (probably why the initial measurements were wrong) I was warned about secondary cancers in the bones, lungs and brain, all terrifying to think about, so I do know and empathise what you are going through.

Chemo and radiotherapy are not effective with RCC so the concern is that the op gets it all.

I feel sure you will be fine, you are welcome to PM me if you are worried. Also contact Macmillan or any other organisations that you feel may help support you.

I became allergic to Clexane during the bridging for my total hip replacement recently. The lumps and bruises remained for several months, I also came out in a rash from tummy to the tops of my thighs. I had to use the alternative Fondaparinox instead. Perhaps ask for an alternative if this applies to you.

Sending very best wishes.

Xx