Feeling like an Imposter
Six years ago, at age 46, I was diagnosed with Stage 1B mixed mammary carcinoma, ER+/PR+, HER2- in one breast. I had one surgery - double mastectomy plus bilateral salping-oophorectomy direct to reconstruction. I have a strong family history of breast and ovarian cancer. I did not need radiation and my Oncotype score of 18 meant no chemo. I chose not to tell anyone outside a very small circle of loved ones about my diagnosis and treatment and simply tried to go about living. I got in shape, lost weight and was on the at least seven year plan for anastrozole. My side effects were minimal. My plastic surgeon did a fantastic job. I didn't feel like I belonged on a breast cancer forum. My oncologist told me I had reduced my risks about as far as they could be reduced. Ha. As of June, one month shy of my six year surgi-versary, a trip to the ER for an unrelated problem resulted in a CT scan that showed concerning lesions on my liver… following blood work, MRI, liver biopsy and PET scan, I am now at the end of round one of Kisqali and have finished my loading doses of Fulvestrant. This time, it's ER+,PR-, HER2- (although might qualify as HER2-low). I am still young and mostly feel healthier and more fit than I was a decade ago (the Kisqali makes me queasy, hoarse and tired but I bounced back very quickly after just two days into the week off). This is surreal. I am still not telling anyone outside of my very small circle of trusted loved ones. I visit the oncology department and I don't feel at all like I fit in - I have my hair, I have decent energy and pretty good spirits. I wear a mask because I know how vulnerable cancer patients are (and I still feel like I don't belong in the vulnerable cancer patient category despite having low WBC counts)…. how many other breast cancer patients feel like you don't fit in because you're too healthy to be here and this just can't be happening???
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vermonster,
I’m sorry that you’ve had a metastatic recurrence. I just hit the 13 year mark of living with MBC. I was essentially de novo (bone met was discovered after bmx and prior to the start of any tx). So , I have been stage IV for over a decade and, I have never had:
- Chemo,neither IV nor oral and never dealt with the side effects associated with chemo.
- Radiation to the breast, but I have had radiation to my bone met
- Only treated with AI’s for the first 12 years and am currently on no tx at all.
Have I ever felt like an imposter? Yes, from time to time. Some folks tell me I have no right to complain about my health since I’ve had it relatively easy. A few have even questioned my diagnosis because I have always looked completely healthy, though very skinny. While I do understand that I do not fit the stereotype of what a stage IV cancer patient looks/acts like, I know that I do have MBC and things can change in a minute. Don’t misunderstand, I am grateful for my good fortune but really dislike when the seriousness of my bc is downplayed or even denied. Yes, someone once mentioned that my oncologist was probably wrong.
I worked for 10 years after my dx and everyone and their mothers knew about my condition as I am very open and hope that folks will one day be able to talk about cancer without fears of whispers or judgement. That aside, when you have MBC , you have MBC! We cannot control how treatments make us look or feel . Despite many medical advances, we cannot control the course of our disease. So much about bc is still not understood and there is no explanation for why outliers exist or for how long we remain outliers. I don’t think pain and suffering make people more legitimately stage IV than those of us who’ve had an easier time. MBC is still incurable and some of us are simply lucky but that luck is very, very tenuous. Take care2 -
Thank you, exbronxgrl - I am sorry you were stage iv basically de novo, but it does give me hope that you are 13 years out - and I'm glad you are still taking the time to support others on here. I am trying to take things as they come, be grateful I still look healthy (allowing me to keep my privacy), feel healthy and be as normal as I can while I can…
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When you are stage IV with good QOL, you are not an imposter IMHO, you are an inspiration to others with BC no matter what stage! And an asset to any group.
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@vermonster Sorry to hear about your progression to stage IV. But it makes two of us with similar discoveries. I had my initial ILC bc in 2008, went through bilat mastectomy (radical on the right and prophylactic on the left), radiation and chemo. Seven years of Anastrozole and Reclast. In May 2024 also by accident found out I have mets in my liver and GI. But what is interesting the status changed from ER/PR + and HER- to ER+ 100%, PR - even though the staining is strong (3), but less than 1%, and HER2- low (1). I am thinking AI does this trick. I am also on Kisqali and Letrozole, feeling good. I am not an imposter, neither do you. Still cannot fully absorb the idea that this is non-curable, final. First reaction was shock and awe! And fear. Told my family and some close friends as I used to host many parties in my house and now need to be careful with those who can be sick. But in general I am living my life and trying to keep my hopes up, even though the genetic report on my liver biopsy shows worrisome deletion of the RB1 gene (CARIS). But my blood test does not (Guardent360). Still waiting for the genetic picture from my GI. As long as we are feeling good that’s what matters.
Please let me know what your genetic report discovers.
And let’s keep in touchHugs
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@vermonster, you are not an imposter - but I understand where you are coming from. Yesterday was 1 year from my de novo IV dx. It took a while to get my head around the implications. In the past year my family cannot believe how good I look and how much energy I have - the best in years. Talk about ironic. I have been on Letrozole/kisqali for 11 months and they have been very kind to me - something for which I am very grateful. You will get amazing support here and the wealth of experience and willingness to share is so generous. In your pocket for support.
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