Is there a link between CLL and other cancers?... - CLL Support
Is there a link between CLL and other cancers? I have CLL and had endometrial cancer, my ex has CLL and has rectal cancer.
Yes there is an increased risk of secondry cancers with CLL, mostly skin cancers.
'Patients with CLL/SLL have more than twice the risk of developing a second cancer and an increased frequency of certain cancer types. Awareness of risk factors could permit early detection.'
Recent study from the Mayo clinic...
ncbi.nlm.nih.gov/pubmed?ter...
Some are looking at the Human papilloma virus as a cause...
ncbi.nlm.nih.gov/pubmed/202...
MD Anderson study...
jco.ascopubs.org/content/27...
Skin cancer study...
I can vouch for Chris's comment about skin cancer.
I was told 5/6 years ago that the four lesions on my back and chest were psoriasis and as they didn't bother me I did nothing about them. My CLL specialist had seen them on numerous occasions over the period and had never commented or expressed concern. Roll on to last October, and they were becoming a nuisance as they occasionally caught in my clothes so I sought treatment. Ever stronger steroids did little, so my GP carried out a biopsy and it turns out they're basal cell carcinoma (thankfully not melanoma) rather than psoriasis which I'm now waiting to have surgically removed.
I forgot to mention that there are also transformations in CLL, where secondary cancers spring to life. Called Richter's transformation...CLL activates an NHL usually an aggressive diffuse large B cell lymphoma, but can also be Hodgkin's lymphoma and rarely other lymphomas...
Depending on the research study this can occur in 5% to 10% of CLL patients.
Many people believe that CLL changes and becomes a NHL. This is untrue, as I can attest to....CLL remains and the diffuse large B cell lymphoma runs in parallel to it. When this occurs CLL is put on the back burner and forgotten about, since the diffuse large B cell lymphoma is highly aggressive and requires immediate treatment.
I have had CLL for about 7 years and have had treAtments. Last. Year, I found a less than small pea sized bump on my throat. Mentioned it to my haematologist and it was discovered to be thyroid cancer. Had thyroid removed and treatment. Three weeks ago I had a scan in neck and throat area and all was clear. I go back to my thyroid consultant in a week's time to get results of a blood test I had done. If that is clear, then I am a happy bunny!
Oh yes, for the first time in 7 years, I go back to see my CLL consultant in 6 month's time! Am over the moon!
(I was not aware that you could get another cancer). However, I do think you need to be alert to any changes and alert to what is going on in your body.
A bit like Marisa I can confirm a secondary cancer. I was diagnosed about 8 years ago and last year a routine colonoscopy revealed colorectal cancer with some polyps. Next week I go back to the hospital for a thorough check by a dermatologist as I have some crusty dark spots on my back.
I lived for 35+ years in a hot sunny tropical country and so I try and keep a good watch on any potential skin problems.
We must all remember that those with CLL just do not have a fully functional immune system.
But also a recent report from The Journal of Clinical Investigation showed that, and I quote, ‘ Skin Cancer able to fight off body’s immune system ‘..
So it could be that some other cancers also lower the immune system and if you then combine your CLL with a melanoma you are then twice as likely to experience serious problems. All of which does perhaps explain why a secondary cancer for a CLL patient can be so serious. There is much we still do not know..
See as follows:- bbc.co.uk/news/health-21635697
Dick
i was told that CLL doesnt increase the risk of any other cancers...my consultant told me this...so i am wondering now who told there people that there is more than double the risk of it??i hope its not just scaremongering as we have enough to cope with as it is
Thanks for your answers all, I do look out for skin cancers because I too lived in a hot country for quite a while and spent lots of time swimming etc. Sounds like we all need to keep an eye out for anything else!
Interesting and important thread, thank you for sharing your stories and unfortunate experiences.
This is a topic often discussed within the on-line community and at CLL Support Association meetings, increasing awareness does aid us to implement some precaution that may reduce risk and keep an eye out for anything else. A reducing immunity and treatments will contribute what it does to the problem. i admit I was upset at first to learn about it after spending time with the community, as I was about other information not made clear at diagnosis.
Several have written about this for us and there are recent studies that report on the incidence and reasons.. Thanks for the recent links to information supporting this Chris and for sharing your own experience of Richters's adding NHL to your plate.
Chaya at CLL Topics has written several easy to understand reviews for patients of some of the information that supports this if you wish to learn more. There is a lot of information available now to help us consider this.
Welshlady, the problem with providing scientific studies like this (as useful as they are), is it's impossible not to spook the hell out of people who may already be feeling very vulnerable or having a difficult time.
Please don't let this information spiral you into unnecessary worry. I'm using it as information to make me watchful of other possible problems rather than some kind of prediction.
I'm not sure what kind of conversation you had with your Consultant but I have a strong feeling he was working on 'a need to know' basis in his reply to you. Maybe he wasn't even sufficiently aware of a lot of this new research. There's lots of things I ask my Consultant but always avoid the 'and can you tell me some additional depressing news' because neither he or me can predict the future to that extent.
Use this information to protect yourself in the future but please take my approach and don't live in fear of it. More people will be unaffected than affected is my view. Stay positive and don't let it stress you further. Regards,
Newdawn x
Hi Welshlady I have just posted this thought in another forum.
None of this information about increased risk may effect us. we can put it in perspective, Risk is just another way to say chance and the chance of someone in the general population getting two cancers is small. So if CLL increases this risk it is a small increase in chance and in the majority may never happen..
Again we are all different and chance is different in each of us so, a study that gives a statistic for a group of people is an average of the group and not what may happen to you. How our individual disease evolves affects our individual immunity over time and may not increase our own chance. Our disease may never progress to treatment and add further chance. I agree living with CLL and all the waiting and wondering is very hard at times. It is good to talk about it, many in the group will have their own perspective on this and be able to share how they deal with the cumulative effects of information about negative possibilities.
Can we reduce this increased chance? I am not sure, but being aware does allow us to avoid to much burning sunlight and reduce carcinogenic influences. Also identify potential changes early. But living life has always carried risk and the older we get the greater that risk becomes from the effects of life already lived. People are living longer these days and CLL is most common in the older population. There is so much that can skew the statistics. Do we ever know where we are in the pyramid of chance??.
I was diagnosed with CLL in early 2009 while going through prostate cancer surgery. By late 2012 I underwent chemo, cought meningitis after the first treatment, after hospital for 10 day and 10 days at home I beat that, then back to chemo. Two years after chemo it started creeping back. I went in Ibrunitib pills daily, brought it back under control, then year after that, sept of 2016, lump on neck, went in, needle biopsy but it went away, 3 weeks later it was back, cat scan, needle biopsy, core biopsy the final surgical biopsy and I was told Richters Transformation..... Now have had 4 sessions of Chemo, seems to be working but need to do 6 then do stem cell transplant.... Has anyone went through this by chance? I'm looking for clinical trials that might be promising after the stem cell transplant and hopefully years before it comes back but want to have the latest treatment in mind prior too.... I'm all ears, I think we are on the right track but always open to comment.... Thank you
You've been through a great deal - with more big challenges to come. Your question deserves a separate post - perhaps with the subject 'Stem Cell Transplant to cure Richter's Transformation '. We do have members who have had Richter's Transformation who would be happy to share their experiences.
Neil
I had a Richter's in 2012 and in my case the RCHOP has held it in check...
I also looked at a transplant, but due to age and comorbidities, fludarabine refractory, it was not an option for me... the risk outweight the benefit
There are clinical trials for Richter's at the Mayo, OSU and MDA you might investigate. I know several who have entered them and most are doing well... Not sure your location...
~chris
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