Anyone have CLL get 'jumpstarted / activated' by undergoing unrelated surgery?

[ElliptiGOuser]

Just met with my Oncologist today who said my 'wait and watch' status can be affected for any number of unknown reasons. He has shorted the period between my visits from every 6 to every 3 months (this was my first 3 mo. check) as the easily detected lymph nodes are becoming more numerous (but no doubling of WBC...'only' 55k v. 64k in Jan). I am scheduled to have a hydrocelectomy on Monday and he mentioned how 'one' of the ways CLL can get 'activated' or more aggressive, is in response to surgery. So, finally my question....has anyone had this happen to them....I was told by my Urologist that this is not a 'difficult' or 'lengthy' surgical procedure but I am wondering if anyone has been in a similar situation (i.e. have a relatively minor surgical procedure 'turn on' their CLL)? As for background...I was diagnosed in Jan 2020 (only because I thought I might have an elevated PSA...feeling the need to pee too frequently....that came back normal (just hypersensitive to caffeine) BUT, my WBC was 61K. I've had 'mild' night sweats, leg cramps but no loss of appetite. I have started exercising like crazy (rode 21,212 miles in 2021, 15,551 miles last year, and hope to do the same this year) and have tried to cut out processed foods (for the most part) and follow Dr. Micheal Greger's (author of 'How Not to Die'...my new 'bible') recommendation of a whole food plant based diet. I think both are serving me well, but it could but coincidental. Oh, not sure how much info this site lists for each of us but I am a while male, just turned 64 and work part-time, planning on full-retirement in 1 year @ 65.

[SofiaDeo]

You may have more of an SLL presentation, and may need to monitor internal node size(s). And if it were me, I would ask to have both a sample of the fluid inside the hydrocele as well as a piece of the hydrocele capsule, tested to see if either contain CLL cells. CLL infiltration to other tissues is rare, but it has happened. If your particular variant happens to be one of those that infiltrates other tissues, it would be nice to know.

Re: "turning on the CLL"....anything that can stimulate the body to make lymphocytes might stimulate our CLL. So some have had lymph nodes swell after vaccination, others have had CLL worsen as neutrophils fall....surgery would fall under this umbrella as the body starts the various repair processes after even a minor procedure. You just can't tell ahead of time, what might stimulate lymphocytes to start growing.

Your profile is where you can log stuff like age, sex, etc. and write a bit about yourself. You don't have to answer all the questions, mine is at 85% and not likely to get to 100% any time soon.

[Panz]

I have a neighbor and friend that is deal with PSA issues…..he doesn’t NOT have CLL but he was told by to urologists that it was quite possible the PSA number may very well a result of all the cycling he has been doing……just food for thought. His CT scans show nothing conclusive and thus they have him in close observation mode and put the biopsy on hold for now.

Panz 🙏🙂💕🌈🌴👍☘️

[Gradyboy in reply to Panz]

My husband has had increases in PSA and also was told his dirt bike racing may play a part in that. So he quit for awhile and had them rechecked and they dropped.

[CycleWonder in reply to Panz]

This is of interest to our household since we ride often. A study I read suggested not ringing for 48 hours prior to a PSA test as the riding may temporarily raise PSA levels.

[devonrr]

I’ve had two bouts of invasive surgery. One in w and w and the other after FCR. Made no difference at all to my bloods.

[New-bee-cell]

Words are so important. I would clarify with the doctor what they meant by “activate” or aggressive. When I have vaccinations and infections, my nodes swell quite noticeably. Then they generally return to something near baseline. I have the SLL version. I imagine surgery could create the same type of response, but I’m not sure that would mean that the CLL has morphed into an aggressive form. But, rather, the indolent form is (temporarily) more abundant during an immune response to an intruder (ie. vaccine particles, bacteria, scalpel). Worth clarifying the language with the doctor, I think. Best wishes for your procedure!

[RZ8983DV]

I had prostate surgery 6 years ago and it didn't affect my CLL (WBC and Lymphs).

[claree_ford]

I had two operations within a year of diagnosis (gall bladder and kind of the oppposite to yours ovaries). No effect at all on my cll and no one suggested it. Good luck to you and be as well as you can be.

[Harvist]

I've had gall bladder removal, a heart attack and a number of smaller invasive actions (hernia repair, cataract removal etc) over the twelve years since diagnosis. None have had an effect on my CLL and still on W&W.

[jiffer]

I'm an avid cyclist. After Rotator cuff surgery in January there was no change in my numbers.

[J1015]

since being diagnosed in 2016, I have had rotator cuff repair and a hip replacement (I was a long distance runner) and my CLL has progressed very little in those seven years. Still watch and wait and living a full life.

[akirsch973]

Hi

I did not undergo a surgical procedure. Instead, I received a pneumonia vaccine booster in my left shoulder as part of an annual physical exam and the next morning awoke to a large mass the size of a squashed golf ball in my armpit. It was removed and diagnosed as CLL/SLL, SLL to be specific. No enlarged lymph nodes were detected during the physical. Subsequently, I underwent radiation treatments and Rituxan infusions.

[Jmiah717 in reply to akirsch973]

Radiation for CLL?I haven't heard that before. Was it helpful? Did they say why they chose that? What were they targeting?

[SofiaDeo in reply to Jmiah717]

It's sometimes used in specific situations:

cancer.org/cancer/chronic-l...

[Jmiah717 in reply to SofiaDeo]

Interesting! Thanks.

[akirsch973 in reply to Jmiah717]

Hello

I specifically have SLL and not CLL. They are basically the same except that my cancer is in the lymph nodes and not the blood. My blood counts are normal. I had 6 enlarged lymph nodes- 3 in the armpit and 3 in the adjacent sub pectoral area. My oncologist felt it would be best to zap the cancer in the lymph nodes with radiation and then treat any circulating cancer in the lymphatic system with Rituxan.

[Ashlar677]

On one of my regular health check ups in 2017, my family doctor noticed a high white blood count and referred me to the cancer center, the doctor determined I had CLL. I was W & W ...started treatment 2000 (imbrvica). In Jan 2023, I had hip replacement I was off medications for all of Jan. When I went in Feb for blood check numbers were still normal. The doctor was surprised my numbers were still low, we discussed not going back on medication until numbers start to increase. My doctor discussed and coordinated with the MAYO clinic. They agreed with him about waiting before going back on medication. In April, my numbers are still normal, my finger nails have stopped cracking off, my hair has stopped falling out, no mouth sores, not so tired. I feel way better off the medication. It maybe short lived but feeling normal is GOOD. So for the short term my cll did not increase in numbers because I had an operation. I guess only the future will tell.

[jijic]

I was 35 at diagnosis with swollen nodes in my neck and groin and my WBC jumped drastically from 22 to 130k for no apparent reason about a year later, then continued to increase very slowly. I started treatment two years later not because of my WBC but because my platelets dropped to under 100.

CLL is weird and unpredictable and I wouldn’t worry so much about what might trigger something.

[narl]

i've had two spinal cord surgeries and a gallbladder removal, and it didn't affect my CLL.

[ElliptiGOuser]

Thank you very much everyone...I feel MUCH better with my surgery scheduled for 0915 hrs tomorrow...I'll be sure to post an update when my next blood work is ordered (approximately 3 months later!)