ILC Mammaprint and CHEK2 gene mutation
Hi, I am Gloria 55 and I have been diagnosed with Invasive Lobular Cancer -22mm. Estrogen Positive, HER-negative, one lymph node taken out and showed negative. According to Oncologist I was borderline to be considered Chemotherapy. Prosigna test was done and showed "medium" risk of reoccurrence. It was left for me to decide if I would like chemo. I investigate more to learn about Mammaprint test which came recently as "High" … again very borderline but "high" 0.006%. My tumour was Luminal. I also volunteered with local research scientists who found CHEK2 mutation. I have done some research to understand that Lobular Cancer does not respond very well to chemo and that survival rates of those who undergo chemo are worse that for those who did not.
In addition to all this, CHEK 2 genetic mutatio means that I donot have two copies of the gene that repairs DNA and am more prone to Cancers. So I assume that chemo needs to be targeted and personalised... rather than blanket approach. Is anybody on this forum able to provide more informationon/experinace on chemo options please? Thank you very much !
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ggloria007 has asked us to post this link in reference to the research she has done: https://www.frontiersin.org/articles/10.3389/fonc.2020.591399/full
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Moderators, thank you so much for this link. Very informative.
Have you seen any research for ILC, letrozole vs. examestane?
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Hi Lilly, I have found in several scientific papers that letrozole is better than tamoxifen for Lobular! this is what Oncologist prescribed... Letrozole is nonsteroid whilst examestane is steroid; both are aromatase inhibitors. Some people may get on better with one drug than another. Sometimes the edocrine drugs are changed in the course of therapy. If you find difficult to cope with the side effects from one ddrug your oncologist can recomend different... Do you have a CHEK2 mutation Lilly? DId you have a chemo? which type of chemo? Carbplatin? Wishing you all the best!
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ggloria007, I am not checked for CHEK2 mutation and after 2 years of letrozole, I'm taking a month off to switch to exemestane. I know they are different formulas and I hope I will have less SE from the second one. I wasn't recommended for chemo. I can see you are PR- like me that makes ILC more aggressive.
Did you have surgery? Radiation?
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Hi Lilly, yes, I hope new hormonal therapy will work for you. Yes I had a surgery, tumor taken out, one node take out (it was clear) as well as the margins.However, becasue of the agressivness they recomend chemo...
take care x
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Hi Gloria,
I had ductal rather than lobular, so I can’t add any insight about how lobular may or may not affect treatment recommendations.
However I do have a CHEK2 mutation. My oncologist, breast surgeon, two genetic counselors, and lots of research, told me there weren’t any specific changes in my treatment recommendations based on CHEK2 status. It does change my surveillance protocol though. I alternate mammogram and MRI every 6 months and got my first colonoscopy early and will do it every 5 years instead of 10.
I had a lumpectomy before I got the results of genetic testing, so I wasn’t able to factor CHEK2 into my surgical options. But I do consider getting a skin-sparing mastectomy in the future since I believe I’m very high-risk for a new primary breast cancer. I’ve also made many lifestyle changes since finding out that I’m only working with one good copy of this cancer prevention gene. The side effect of that has been feeling healthier than I have in years!
I did do chemo, but that was because my Oncotype score was 25 and I was only 42. My oncologist said it is believed that much of the chemo benefit from women under 50 comes from stopping their menstrual cycle so he gave me the option of chemo vs aggressive endocrine therapy with Lupron/AI. Since I had a positive node and didn’t want any regrets, I opted for chemo and did 4 cycles of TC. Chemo didn’t stop my cycle, so I started Lupron when chemo was done. Initially I took it with tamoxifen, but tamoxifen gave me terrible mental health side effects. I stopped the tam and switched to half-dose anastrozole and have felt pretty good ever since. Achey hands in the morning is the main side effect. I feel comfortable with my decisions being right for me, but I know the grey area Oncotype and mammaprint scores make it difficult to know with confidence which path to take. Happy to answer any other questions about my experience if it’s helpful. Best of luck to you!
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Hi Jennyl you are saying that you made many lifestyle changes since finding out that you are CHEK 2. and that the side effect of that are great! I am curios to hear what changes did you make? cheers
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Hi Gloria,
I really used to burn the candle at both ends and not really take care of my health. I worked too much, drank too much, didn't make healthy food choices, NEVER exercised, didn't manage my stress well, and never made sleep a priority. I was diagnosed at the end of Feb 2020, so right before covid hit. Having life come to a screeching halt from the pandemic, at the same time as I was being diagnosed and processing all this new health information, allowed me to slow down and really think about how I wanted to treat my body differently. I quit drinking (other than the very rare and special occasion) and started exercising. I totally changed my diet, started seeing a therapist, made sleep a priority, etc. I don't know if it will keep me cancer-free, (it can't hurt!!!) but I know it has helped me tolerate the physical and mental side effects of all that I've been through. Not having estrogen still sucks, but I feel like I'm doing pretty well for being slammed into menopause at 42. I feel strong and healthy and active and I'm in a pretty good place mentally and I know I wouldn't be able to say that if I hadn't made these changes. It's all pretty generalized "healthy living" type stuff, but it's the first time I've ever made much of an effort in that regard. I wish I had made these changes a long time ago, but I guess I'm just grateful that I'm able to make them now. Did you end up doing chemo?
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Hi all,
I am jumping in as I too have a variation of ILC (pleomorphic, with some additional LCIS and DCIS too). It is so good to be able to hear other's stories and questions. Yesterday I just completed a course of chemo (4 three week cycles of Taxotere and Cytoxan) due to the pleomorphic type of ILC, the cancer being grade 3, 0/3 node involvement, and an Oncotype DX score of 39. I am 59 years old, post menopausal, and the ILC was caught very early as I had been doing staggered mammograms and breast MRIs due to extremely dense breasts and the fact that my mother had breast cancer (my genetic test placed me in a risk category where MRI was recommended). The cancer was never spotted on mammogram or ultrasound, so I am grateful for the early heads up the MRI gave. My cancer was diagnosed in mid October, I had a lumpectomy and sentinel node biopsy in mid November, the pathology revealed not clear margins, more cancer that originally thought, a higher grade and confirmed the pleomorphic nature. At this point I was given the Oncotype DX test which resulted in the recommendation for neoadjuvant chemo which I began right at the New Year.
I have opted for a mastectomy rather than re-excision as follow up and this is happening in April after I recover from the last chemo cycle. We will follow up with 5 years of Arimodex which has been shown to be particularly effective with ILC patients who are post menopausal.
So, A LOT more than the original plan assumed (based upon MRI guided biopsy) of lumpectomy and radiation, but it is all based upon what your body reveals. My next wondering is about prophylactic mastectomy of my left breast, but I just need to get thorough this for now and take some assurance in the close follow up I have for the next few years and that we can respond quickly and with a more informed stance using MRI again - that was a game changer for me.
I wish you luck as well and will also continue to read the research and ask my team many questions (they know I bring a list each time!).
Thanks for sharing and listening to my story too.
Best,
Donna
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Hi Jenny, good change of life habits! well done!
What chemo did you have?
My oncologist is suggesting:
- 4 cycles of taxotere/cyclophosphamide given the node negative lobular component or
- 6 cycles of carboplatin/docetaxel given the CHEK2 mutation.
I am just researching to feel comfotable we make a good decission... as it is rare combination..
getting there... :-)
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Hi Gloria,
I did 4 cycles of Taxotere/Cyclophosphamide but the Taxotere was switched to Abraxane after an allergic reaction on the first cycle. I had one positive node and was premenopausal at the time of diagnosis so I made somewhat aggressive decisions at every fork in the road. Chemo didn't stop my period so when I was done with the 4th cycle of chemo, I started Lupron to suppress my ovaries. Again, I had ductal, not lobular, so I don't know how that would influence treatment. I'm sure they are still learning a lot about CHEK2, but at the time I was making treatment decisions, every doctor and genetic counselor I spoke with told me that it would not change the recommended treatment, only future screening. I'll definitely be interested to hear what you decide. Feeling comfortable with your decisions is so important. Of course I didn't LOVE any of my choices, but I feel 100% comfortable that all of my decisions were right for me personally.
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i had IDC. I knew prior to my diagnosis about the Chek2 mutation so I had already been getting MRIS alternating with Mammogram. That's how my cancer was found. I. have a history of busy breasts with prior issues. 6 months before I was diagnosed my sister was with late stage ovarian cancer. She has the same chek2 mutation as I do. Though ovarian cancer is not strongly associated with chek2 I think it's only amount of time. Anyhow I say this because I believe the mutation my sister and I have is very dangerous. So I opted for a double mastectomy. I'm planning on a hysterectomy to. I was 44 at diagnosis. You can see from my signature below all the other details as far as chemo. I didn't have oncotype but rather Mammaprint done which came back high risk for recurrence. Having my sister diagnosed with late stage ovarian cancer has made my cancer journey that much harder. She will not beat this sadly. Cancer sucks. I'm not messing around. Good luck with whatever you choose.
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thank you for your message. hope all goes well for you ... did you have a chemo? or masectomy was sufficient for you... BTW what was you mammaprint scope? thank you
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I di have chemo. Taxotere and cytoxan. Not sure why that’s not showing up anymore on my signature. My Mammaprint came back high risk for recurrence.
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Thank you! how did you get on with chemo? hope all is well now! x
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Hi I’m DeNovo with Lobular but I have the CHEK2 mutation. Did you get any advice with this mutation?
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ggloria007, I’m sorry you’ve joined us for your sake, but happy you found support like I did.
My Lobular cancer was found late, so my experience and decisions will be different. That said, my research indicated that people did better with chemo and surgery (more aggressive treatment) when the cancer is more advanced.
I didn’t do well on Taxotere/carboplatin so I was switched to Abraxane after my second cycle. Abraxane is more expensive so they probably have to start with TC first. Chemo is rough, but if you can tolerate it, it can do great things, even for ILC. My mother had Iobular and did chemo/single mastectomy. She had 30 years without cancer before she had progression in the other breast. She only did surgery and an AI drug for 5 years the second time. She’s now done with the AI drug and doing great! I hope you can have results like her!
Chemo was not able to treat my large tumor in my right breast completely, but it did work well on my left breast, which had both ductal and lobular. If my tumors had been smaller and I had had a complete response, I would have opted for a lumpectomy instead of BMX, but that was not the case. I mention that because a BMX is major surgery and it is not without long term side effects. I hope you have better options.
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Thank you Cyathea,
Well, i was hit hard by Covid now and my chemo has been postponed 2-3 weeks... probably due tot he radiotherapy and possibly weeken immune system... yes like you said the ILC responds well wen the tumor is agressive (as it was mine).
hope you (and your mum) are doing well.
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