CLL and breast cancer

I am a 54 female w & w, diagnosed 1 1/2 years ago. I was recently DX with breast cancer, infitrating ductal carcinoma. Thankfully at an early stage but a virulent form Nottingham grade 3 and strongly HER2

+. Difficult to find out info if there is a link between CLL & breast cancer. My hematologist & GP don't know any. Will see oncologist this week. Can't find info on internet. Any thoughts, recommendations?

13 Replies

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  • Zusanli, I'm sorry to hear of your secondary cancer diagnosis, but unfortunately that is definitely a risk with CLL. That's thought to be because our cancerous B-cells protect themselves by putting the T-cells that normally hunt out and kill incipient cancers into a stupor. Our higher risk of secondary cancers includes breast cancer and in men, prostate cancer and sadly, as you'd expect, it is not a good combination, thought to be because of the immune suppression from our CLL.

    Here's Brian Koffman's blog on from August 2014:

    bkoffman.blogspot.com.au/20...

    And here's an article from Chaya Venkat from 2010 where she reviews a report into secondary cancers in US armed forces veterans:

    updates.clltopics.org/2204-...

    It is definitely worth getting your haematologist and oncologist talking together so that you are given appropriate treatment. For the moment, your breast cancer will require priority over your CLL.

    Soberingly, two of the three papers reviewed by Brian and Chaya found that malignancies were the leading cause of death for CLL patients. As Brian says: "So get your check-ups. See the dermatologist at least annually. Get our annoying choice of gender and age specific cancer screening tests: PAPs, mammos, PSAs, colonoscopies."

    I'm glad that you've caught this early and wish you well with your treatment. Please keep us informed,

    Neil

  • Hi Zusanli,

    There's nothing more that I can add to Neil's excellent, informative post but I wanted to send my best wishes and support to you. I know there are members on here who have also had breast cancer and I hope they feel able to share their experiences with you.

    I have had a secondary cancer in the form of a malignant melanoma which thankfully has been sorted now but I'm hyper vigilant of recurrence. Unfortunately even when the CLL appears to be behaving itself, it seemingly can be an inviting gateway for other cancerous nasties to sneak through.

    Wishing you immense best wishes and success in beating this.

    Newdawn

  • Thanks Newdawn.

  • Hi Zusanli

    I had breast cancer eight years ago and was diagnosed with CLL in Jan 2014. I asked about connections. Haematologist said it would make more sense diagnosed the other way around - referring to the heightened possibility of other cancers for those with CLL.

    I had grade 1 breast cancer, caught early through a mammogram. I had a lumpectomy, followed by radiotherapy. It was a hectic journey but the care was amazing. That care was so important for physical and mental well being. Talk to those you come into contact with, ask any questions about concerns. If you feel you need support in any area, highlight this.

    I have now passed the magic 5 years and all is well regard breast cancer treatment.

    Two tough diagnoses. Take good care of yourself. If I can help please post me. I know too there are others who may have had experience more similar to yours.

    Seven6

  • Thanks everyone for your helpful replies, especially nice to hear seven6 that your have recovered. I appreciated AussieNeil's factual information.

    I saw my oncologist for the first time yesterday and he told me that he will put me on a protocol for my breast cancer that would also cause the CLL go into remission for about 2 years. After that if the CLL returns I could take Ibrutinib. He told me that it would make my CLL go into total remission.

    First of all, I am Canadian and was surprised to hear that it is available in Canada (which is very good news!) and secondly from my limited knowledge I don't think Ibrutinib can completely cause the CLL to go into complete remission. Is this correct?

    Also, on another subject. I am self-employed. I initially took 2 months off to have the surgery to remove the breast cancer lesions...which turned into 2 partial mastectomies 3 weeks apart. Thankfully all the cancer is gone. Now the plan is for 4-6 months of chemo followed by 3 weeks of radiation. I am under a financial crunch. I am wondering if it is better to bite the bullet and stay off work for at least 2 more months rather than tax my body and try to work? I realize that everyone's situation is different but I don't know who else to ask that has had to deal with the combo of both CLL and a secondary cancer. Any thoughts?

    Thanks for all the great information. It is very helpful.

  • Hi

    Sounds as though there maybe some positives from treatment!

    I found sharing with my oncologist helped clear my worries, the practical things too, they are there for the whole person. In England we also have a dedicated cancer nurse who offers a place to talk things through. There may also be specialist help, ask the questions. I know it is hard to make these decisions and I don't know the employment situation in Canada. What are your own thoughts, you will have expertise on yourself and perhaps an instinct.

    Take things slowly, look after yourself, and when you are ready do all the things that create good health and well being.

    Good luck with your future.

    Seven6

  • Thanks Seven6.

    I am learning that in "cancerland" things can vary so much for each individual that it is difficult to make definitive suggestions. In my journey I am learning that I have to ask a lot of questions. When I was first diagnosed with breast cancer (March 2015) the doctors thought that I wouldn't have to have chemo and then after the surgery I found out that I did have to have chemo. It's a step by step learning process of knowing who to ask and what to ask. My oncologist told me that I was a "rare bird" to have both CLL and breast cancer so more difficult to predict outcomes than in a patient with just one cancer (just saw him a couple days ago).

    The long and short of it is that only now (like today) am getting access to cancer nurses that I had asked for access to when I was first diagnosed in March. I guess I was too stunned recovering from the 2 surgeries to really push for answers. And I am a doctor of Traditional Chinese Medicine and am accustomed to dealing with health matters and I still got caught in the confusion!

    I find the info on this site to be immensely helpful. I had never even heard of CLL until I was diagnosed with it.

    Thank you for your good wishes. Best wishes to you as well.

  • Hi Zusanli

    I have had CLL for 4-5 years and was diagnosed with ovarian cancer and had surgery in December. I am currently trying to get through 6 chemotherapy treatments. I think your age, (you are so much younger than me) might help you cope with chemo quite well. The effects on me have been that my bloods are not recovering well after 4 chemo treatments, anaemia, and low neutrophils and diminishing platelets plaguing me. This may not be such a problem for you.

    If your employment is not physically demanding you might find that being in work helps you stay positive, a lot will depend on how accomodating your employer is about letting you taking an odd day or two immediately after your treatment if you should feel extra tired.

    Be aware though that chemo further reduces your immunity to infection, so do take that into account when making your decision.

    I was also told that my Cll could go into remission but that any future CLL treatment would count as my having been previously treated.

    Whatever you decide best wishes for a healthier future, and I look forward to hearing how you are doing.

    Bubnjay

  • Hi Bubnjay,

    Thanks for your reply. I found in my cancer journey you don't know what will happen until it happens and it is so hard to plan. I spoke to a cancer social worker on the phone who I will be meeting with tomorrow and she said something interesting. She said that we in the first world are so used to being in control of our lives and knowing what is ahead that we forget that most of the people in the world esp. in developing countries don't have that luxury. The reality is that we don't really have control. We just have to stay positive and look for the silver linings in all this. I am also learning that information is powerful.

    Getting the dx of a 2nd cancer has prompted me to learn more about the 1st one of cancer I got.... CLL. I am slowly beginning to understand this very complex disease and learning all the acronyms and the jumble of terms and names of medications. All the posts on this site have helped a lot. I am only now starting to get a handle on it. Funny how you have to be in the right head space to be able to do that!

    I am a self-employed doctor of Trad. Chinese Medicine and can make my own schedule. I just don't want to hurt myself further by working too much during chemo. Also I am sometimes exposed to people with colds and flus which is a concern. I ended up with pneumonia in March because of that even with the 2 anti-pneumonia shots I had.

    It is helpful for me to hear about other people's experiences. Thank you for sharing yours. I am so sorry to hear that you have had to deal with other cancers on top of CLL. I wish you all the best in your treatment and hope that your blood work will begin to improve soon. Take care.

  • Hi there, like you I was first dx with CLL in 2001 and the lymphocytes started to climb, but then in 2005 I found a 'lump' which turned out to be breast cancer DCIS grade 2 &there was no information out there. I had surgery, radiotherapy and hormonal treatment, and so far all is well... but you tend to go on 'watching and waiting'. I think the radiotherapy knocked the CLL lymohocytes back a bit. I think there is a theory that once you have developed one type of cancer you are more likely to develop other forms, and I have also had precancerous nodes removed from my bowel, and that is well known that breast and bowel cancers are similar.

    This may not be much help to you but have you thought of contacting the scientific offiers of Leuakaemia Research? I did and found them at least supportive. Keith (?) was the one I spoke to.

  • Hi Catmad1,

    I didn't realize that breast and bowel cancers are similiar. Thanks for the info and thanks for sharing your story. So glad to hear that "all is well" after your treatment. It is so encouraging to hear that. You've had CLL for a long time! Even more encouraging to hear that you are doing well. Do you mind if I ask how was it for you energy wise to get through the treatment? Did you have many side effects? Were you able to function very well in terms of activities of daily living?

    I did contact the local leukemia assoc. here in Canada and it is a lesson that it never hurts to ask. The social worker there told me that they have a volunteer there who has a Hx of both CLL and breast cancer who is now in complete remission and she will set up a phone meeting for us next week for me to ask her questions.

    I watched the excellent "Patient Power" webinar this morning which I found very encouraging about the state of the art of CLL tx.

    My breast cancer is HER2+ 3/3, the strongest level which is why I have to go on a harsh chemo regime. I have to be grateful that at least there is treatment available for this.

    I don't feel like I am such a "rare bird" now.

    All the best to you in your journey. It means a lot to me to hear from other women (and men) in the same boat.

    Thank you.

  • Nice to hear that you are coping so well. Yes my energy levels are variable but each time I comment on feeling particularly low the medics only say that's its because of the medication I am on for essential blood pressure or that its my age (currently 77) which gets me hopping mad! I did my final exam for my degree the day after I had finished radiotherapy, so I found it didn't affect me immediately, but then my finger nails became very soft and peeled off, (ugh!) and I did develop a bright pink rash in the radiated area, which after investigation by biopsy, it was announced to be radiation damage. However, 10 years later I am still not 'pushing up the daisies'. Keep your chin up and let us know how it all goes for you. You are constantly in my thoughts.

  • Dear Catmad1,

    Thank you for your very sweet reply. How many cats do you have to be called catmad?

    My chemo starts on June 25th. I have been busy trying to figure out my work schedule for the coming months. It is so hard to try to plan anything but I am hoping for the best. I plan to work very part time.

    I am always encouraged to hear how well people are doing. There is a lot of good news in the posts about new medications and protocols to treat CLL.

    I have come to terms with needing to rest a lot (at least for now!). It takes a while to get used to your life being turned upsidedown. I have been doing as much as I can proactively. In British Columbia there is a centre called "Inspire Health" which is an alternative medicine support centre for folks with cancer and their supports. It is free to join for Canadians. They offer courses consults in nutrition, supplements, exercise, meditation and so on. I have been involved with them.

    This morning I woke up feeling a swollen lymph node in my groin. Ah, the fun of CLL!

    I hope you continue to be well. I am very hopeful and very thankful that there is any treatment at all.

    Best,

    Zusanli

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