Hello members, I was diagnosed with cll 7 years ago, bloods are stable and no treatment needed so far.
I was diagnosed with breast cancer in October 2024 and had a lumpectomy and sentinel lymph nodes removed. Thankfully the margins were clear around the removed tumour and no cancer detected in the lymph nodes. My cancer was oestrogen and progesterone positive so had to stop my hrt straight away and now on medication for 5 years.
I start my radiotherapy next month and my question is, will the radiotherapy affect my cll? I have asked my clinical nurse specialist but she said that there has been no research on this, and that she has not come across this scenario. I’m a little concerned. Many thanks in advance to my question.
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Raquel22
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Unfortunately, your clinical nurse specialist can't be familiar with the NCCN CLL Guidelines, because that document recommends radiotherapy to shrink enlarged nodes and the spleen. If any of your CLL swollen nodes are exposed, they should shrink considerably
Thank you for your reply AussieNeil, as far as I’m aware I don’t have any swollen lymph node’s of which I’m grateful for. You have eased my mind, many thanks 🙏
I had the same situation as you and my specialist CLL consultant said there was absolutely no reason why I shouldn't have radiotherapy, which put my mind at rest.
Good luck with it - I found it very straightforward but tiring!
Awww thank you for your reply Greenbunnies, you have helped put my mind at rest. Yes I’ve been told it could make me feel even more tired (if that’s possible!) The surgery and medication is proving to be very tiring in itself, all normal I know.
Confirming what others have said. I've had two bouts of radiation for prostate and stomach with no problems at all. Not even noticeable increase in tiredness.
I had just the same treatment for breast cancer whilst also having CLL diagnosis and haematologist wasn't concerned that the treatment would make CLL worse. In line with what AussieNeil says, she told me that radiotherapy should shrink any exposed nodes.Good luck with your treatment - I didn't find the surgery or radiotherapy any problem but gave up on the anti-oestrogen treatment after one year. It just didn't suit me so I went against advice and made the personal decision that I'd rather have the increased risk of the breast cancer recurring! 😬 All good eight years later.....though foolish I know, to go against the evidence and advice of the experts.
Hi Linda, thank you so much for your reply, I’m really not keen on having this radiotherapy but the numbers make sense to go ahead with it. I’ve been on the cancer medication for 4 weeks now and it’s really not pleasant but I’m praying that the side effects lessen over time, if not then I’ll be trying a different one but they all have side effects don’t they! Many thanks again x
I wasn't keen to have radiotherapy either but the oncologist persuaded me - showed me how the cancer had spread into lymphatic and blood vessels within the breast, whilst not having reached the lymph nodes. As it happened radiotherapy was straightforward and not particularly tiring. And it's a bonus being able to tell my grandchildren I have tattoos (but I don't tell them where, or that they were a gift from the NHS!).
Oh Raquel, fibromyalgia, EDS and hyper mobility and now breast cancer as well as CLL --you do have a lot to contend with! (I had to look up EDS.) So sorry that you are having to go through this. Hope that you have lots of support from those close to you while you go through this extra treatment. Eleanor
Thank you for your message Eleanor, yes I have my partner and my sister and my brother in law who are all very much here for me. I think the fatigue is the worst part to deal with because it never seems to leave, but I’m hoping Spring will help me on my way in recovering. Lovely to hear from you x
Sorry to hear you're having to go through all of this. I have quite a history with breast cancer, too, including radiotherapy at Addenbrookes in Cambridge. That was in 2002.
I had a very bad reaction to the radiotherapy. Quite a large area of skin looked like someone had taken a cheese grater to it. My GP diagnosed it as a fungal infection. It wasn't. My (breast cancer specialist) Macmillan nurse said it was a burn.. rare, but on the scale of reactions, she scored it at 9/10.
Anyway, she recommended tea tree oil. I found a lovely tea tree and lavender cream, and it worked a treat. I healed very quickly, but I still have scars. I also had pain in the breast itself.. felt like it had been cooked (this was before my subsequent bilateral mastectomies). The remedy for that was taping high Gauss neo magnets (coin-shaped) to either side, using Micropore tape.
Now, I know that all sounds like mumbo-jumbo, and I was sceptical.. I'm not one to swallow alternative therapies, usually.. but all I can say is this happened, and it worked for me. I'm only mentioning it so that you know there are things you can try if you experience the same issues and you're not getting answers from traditional medicine.
Oh my goodness ChristyAnne you’ve had a right time of it too! I really appreciate your response makes me feel less alone if that makes sense. I’ve found a good natural cream from Moogoo, they are specially for cancer patients and radiotherapy, I’m preparing my skin before my sessions start and I’m about to be called in for my ct scan/measure up and tattoos! Many thanks for your reply ChristyAnne x
Ooh, it sounds like a good idea to prepare your skin. Not surprisingly, things have moved on in the past 23 years! 🙂 I was never offered a CT scan back then, either.. and I can't see the tattoo any more. But in spite of everything, and the CLL dx in 2014, in spite of all the gremlins trying to bump me off, I'm still here!
I hope everything goes well, and you get to ring that bell soon! 🙏🖖
I am a SLL patient and a medical dosimetrist ((which means I plan radiation treatments and perform the dose calculations). I have been doing this for over 30 years. There is no reason for you to NOT have radiation. It gets a bad rap at times but you should be just fine! Please let me know if I can help with any other questions you have!
Thank you so much for your reply Sushiloo, I’ve just been to the hospital today for the planning, measuring and little tattoos, the staff there were so lovely and no question was too small to answer. There certainly is a lot to plan for when you need radiotherapy! I’m just home now with a cup of tea! Many thanks again, so kind of you to message 😊
Hi. Seven years ago I was diagnosed with CLL, breast cancer and a third chronic blood cancer, ET within three months. I, too, had a lumpectomy for my breast cancer followed by radiation. It had zero effect on either blood cancer. And just a tip, don’t plan much the two weeks following completion of your radiation. If you have side effects (and you may well not), this is the time they will be the worst. It was for me. All the best getting through this.
Thank you Lambo1 for your message, it’s so nice to get some advice and hear from people who have gone through the same thing. My 1st session is on Valentine’s Day!! Not the best day but never mind😊
Yes, it was rather over the top at the time. But here I am, seven years later, still in W&W for my CLL, my ET is controlled with hydroxyurea with no side effects, and my breast cancer hasn’t returned.
Hi Raquel22, I’ve also had breast cancer and the same findings and process required by the sound of it. Like you I also was not looking forward to radiotherapy, but it was the best assurance that any micro existence left in the breast got terminated. 😁
I also stopped taking the 5 year adjunct therapy drugs. Initially because I had a hive like allergic reaction to it. This made me do a lot of research and I discovered that it was quite reasonable to not take it, or try another one, and do away with the side effects. I discussed my research with both my breast surgeon and radiologist and both agreed it was a well informed decision to make and they supported it. It is not actually treatment, but a little bit of an extra insurance policy that comes with a price (side effects). But everyone has to decide for themselves what they feel comfortable with 👍
OK regarding how it might have impacted my CLL. My ALC did a significant drop afterwards when it had only ever slowly tracked upwards since found at the end of 2019. My haematologist was surprised and couldn’t explain a connection potentially to the radiation therapy and the drop.
What has it done since? Slowly tracked back up over a year and is not quite yet back to where it was before the treatment. So in essence .. seemed to kick a whole year off my progression numbers 😜
We just don’t know if the two things were related, or random. 🤷
..patients with CLL had an overall Response Rate of 71% (29% CR, 42% PR). The median duration of response was estimated at 22 months. None of the patients had significant side effects from the treatment.
Conclusion: Low-dose RT (4 Gy in 2 fractions) is a highly effective palliative treatment of localized lymphoma masses in patients with disseminated INHL and CLL. The treatment has minimal side effects.
Thanks AussieNeil So, highly effective for treatment of localized CLL masses - yet mysteriously it 'possibly' also partially treated my CLL at the time.. 🤔
I gather that there is constant recirculation of CLL cells between our blood and our nodes, spleen and marrow. So if you remove CLL from any of those (e. g. leukapheresis - separating and removing white blood cells (leukocytes) from the blood, or by radiotherapy), CLL gradually rebalances its distribution.
Hi wellbeingwarrior, thank you so much for your message, it’s so good to talk with people who have, unfortunately, been through the same experience.
Can I ask at what point you decided to stop taking the medication? I’m on my 5th week of Anastrazole and the painful joints and muscles is pretty awful, so is the fatigue but there is a lot going on in my body prior to breast cancer. Sometimes it’s difficult to know what’s to blame! But definitely added pain and fatigue from the medication.
My surgeon has said that there are 2 other meds that I can try but they all have side effects and is it “better the devil I know”? And I’m really hoping that my body gets used to them in time.
Your ALC was interesting to read, it sort of righted itself in the long term.
You're welcome. When I was diagnosed this site was the first place I came to see if there were other fellow CLLers who'd also had breast cancer. Quite a few actually.
I was given Anastrazole and the reaction appeared within about 10 days and I was advised to stop taking it immediately and see my Specialist. I agreed to restart it for a second try and developed an itchy dermatitis on my eyelids so stopped again. I was prescribed Letrozole as an alternative but became hesitant and didn't start it.
I researched all the side effects of those estrogen blocking druges (that accumulate over the long term) and found that generally most women found these side effects lessened a bit after about 2 years!
I was most concerned about their potential to cause brittle bones in the long term. So, I went online and found research from the Mayo Clinic which basically stated that with the type of localized tumor, with no lymph node involvement, the size (9mm) and the grade (2) I had, the chances of it returning within 5 years was between 7-15% (or thereabouts). Taking the drug meant that was roughly halved to a 3.5 - 7.5% chance of reoccurence. Which is probably reassuring enough for someone quite anxious about that happening.
I took into account that I was going to be closely monitored for 5 years with annual mammograms and specialist 'inspections' so likely to detect early if there was a recurrence. Also, that my estrogen will be naturally declining due to age, year on year.
I took the research article with me to discuss with Drs and was told "your mathematics are quite correct and you were quite clever to work that out".... You see the general population are told taking it for 5 years reduces the chance of it returning by half. But the truth is the stats say the chance of it returning are already quite low in the first place. And, it is just halving that 7-15% likelihood. Hope that made sense. I also read that many women bail out by year 2, due to side-effects. I'm just sharing my rationale for the decision I made - I was happy with the gamble.
Ha ha... ALC - Rather than righting itself in the long term.. it just quietly went back to wronging itself!! 😀😂
All the best with your radiation treatment.♥️ Hopefully you are done with just 5 days treatment, as that is all I had to endure. It used to be 10.
As a total aside, in the past 12 months I've had other medication reactions diagnosed as Urticaria and Erythema in response to anti-biotics I had to take for an infection. This tendency for my skin to start heavily break out in response to medication.. I am blaming on CLL as it has never happened before. 😎
Firstly thank you so much for this lengthy reply it must have taken a while to type all of this, but I am so appreciative that you have. I don’t feel “as stressed” about “having” to take this medication, your numbers make total sense to me and yes frequent mammograms will now follow so this combined with the radiotherapy is a good deal of protection.
My tumour was 13mm and grade 1, caught very early thank goodness! I’m very pleased to hear that you are doing well. Yes you are right 5 sessions of radiotherapy and first one is on February 14th Valentine’s Day!! I had my bone density scan last week, another big side effect and a scary one too especially as we get older.
I am so pleased that I posted my question as it’s really helped me so much, when I was diagnosed with cll this site was a blessing. Many thanks WellbeingWarrior x
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