CLL and breast cancer

I was diagnosed with CLL in April 2012 following a routine blood test. I am in the early stage and have no symptoms as yet. Partly as a consequence of the CLL, I was advised to go for some further routine health checks, including a mammogram. This resulted in a breast cancer diagnosis in September 2013.

I don't know anyone who has managed to be diagnosed with two chronic conditions in one year and don't mind admitting that I am finding it hard to cope and am unafraid of what the future holds. It would be great to hear from anyone in a similar situation.

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  • Dear Louz, I had the same double diagnosis in 2006 and can appreciate your turmoil. There is so much to say, but here in 2013 I am fit and well and in remission from both, so I trust that everything will work out as positively for you. I was very fortunate to talk to an expert CLL consultant who also had experience of breast cancer earlier in his career. His advise was to treat the breast cancer as the priority and after all the surgery, chemo and radiotherapy the CLL was also put into remission .

    So glad you have found this site. I'll be happy to share more info and provide encouragement if you need it.

    Best wishes. MaudMarie.

  • Thank you so much for your reply. Whilst I know people who have had breast cancer (I guess we all do) I don’t know anyone with CLL and breast cancer and I’ve really been struggling with ‘why me, what have I done to deserve this’ syndrome! It’s very comforting to hear that you are doing so well 7 years on. Does it get any easier to comprehend? I still feel like the rug has been pulled out from under my feet.

  • I think that dealing with diagnosis is very personal and when it happens we are unlikely to really understand what it means for us with any certainty. However I now look at it differently, now that I see how very complex our cell mechanisms and genetic structure are, and how they function and evolve I now say ' why not me' as there are so many chances for us to have 'errors' in our biological systems.

    However I do think that we are pretty unlucky to have two complex situations to deal with at the same time. It would help enormously if one clinician looked after you for both conditions but that is not possible. So the most important thing is to learn to act as your own Patient Advocate as you are the only one who sees the whole picture. This will take time to master as however talented and assertive you are normally everything looks different once you are a patient. You will need time and help to understand the practical issues you now face as you have to actively manage both yourself and your clinicians, and deal with the impact on loved ones who are also involved. I found that it also helped me to think about how this was affecting my husband and children and that gave me a focus for my way forward.

    I won't say more now as too much is just confusing. So step by step.

    Do you feel that you can say what stage you are at for both cancers?

    Best wishes again MaudMarie

  • The CLL is stage A. The breast cancer was caught very early and i have had the dreaded surgery and will be on tamoxifen for five years, but no chemo or anything else so I know i have been lucky, but it doesn't feel like it.

    You mentioned your children and this is such a difficult issue. MIne are 10 and 14 and we believe in being honest with them, but we don't want to frighten them and this is not an easy thing to explain without doing that. I guess you told yours?

    Strangely, for a normally assertive person, I have given no thought to managing this myself, i have just let the doctors tell me what to do. I'm a lawyer so you would have thought i would have figured this out sooner!

  • Hi Louz,

    I see you will be on Tamoxifen for 5 years. My wife has just switched to an aromatase inhibitor after two years of Tamoxifen. The reason I am commenting is that the firstTamoxifen she took was manufactured by Wockardt. Additionally, I think she had some made by a company called CP. With both of these she suffered terribly from hot flushes. Someone at her cancer support group meeting suggested that the issue was not the Tamoxifen but the fillers used. She switched brands to APS and, although the hot flushes didn't vanish altogether, they were considerably reduced.

    Possibly a useful tip for the future.

  • I find Relon much better. The first time I was on Tamoxifen I insisted on Nolvadex but I don't think it's eady to get now. Ask the pharmacist what they can get.

  • Hello,

    After reading the posts on CLL & Breast cancer I'm having a few alarm bells ringing. I am 27 and was diagnosed with CLL early part of last year as a coincidence following major bowel surgery for Ulceratice colitis not responding to treatment. I have raised lymph nodes in my neck and groin and have had a lump in my left breast about the size of a broad bean for about 6months. I had always thought it was a raised lymph node & during my last appointment with the consultant I couldn't find it to show him, probably because I was a bit nervous and was looking too far under my armpit rather than my breast.

    I am more concerned now because my other lymph nodes have gone up & down in size depending on how I'm feeling but the lump in my breast has remained the same. I have e-mailed my Lymphoma Nurse Specialist twice but have had no response, I think this is due to maternity leave there is only one nurse working two days a week.

    Do you think I Should phone my consultant or see my GP immediately to get the lump checked out?

  • Hi I think you should do both. A GP will probably be quicker (have an emergency appointment if necessary) but the GP may refer to the consultant anyway so having an appointment in the system will be good. If then you are referred somewhere else you can always canx the appointment with the consultant, who may want to see you as well. Try as many avenues as possible. Good Luck.

  • I would recommend an appointment with an Hematology/Oncology Specialist...forget your GP...they generally know nothing...unfortunately. Always see a Specialist for any disease!! Best Wishes....

  • Hello Louz

    I was diagnosed with breast cancer ( very uncommon in males, 250 cases diagnosed a year in the UK) in September 2007. I had lumpectomy, histology showed carcinoma in situe which means it hadn't spread to the lymph nodes and I opted to have my breast removed. A day before the operation, a blood sample showed elevation of my lymphocytes. Histology of one of the removed lymph nodes confirmed my CLL.

    You don't need to worry, a good number of CLL sufferers have more than one cancer. We have to live with, unfortunately, and be positive. I hope that your breast cancer is at an early stage, even if it is not the range of therapies, for breast cancer, has evolved immensely in the last few years. Make sure your vitamin D3 level is good. I take turmeric and green tea tablets, look after my vitamin D3 level and still not needing any treatment. Wish you all the best.

  • I was diagnosed with CLL when they took a lymph node biopsy following my second incidence of breast cancer, this year. I also have a shadow on my lung. I don't know what that is yet.

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