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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I'm sorry I went "hermit" after August. It's one of my character flaws - when the going gets tough, I isolate/hibernate.
After only three rounds of Kisqali/Fulvestrant, and getting a full-body rash no one could explain (and steroids to deal with it) I had significant progression. So then I did three rounds of Doxil which were just nasty, starting with allergic reaction to first round. And had progression again. My CA15-3 was up over 1500. So, in December we switched to Enhertu (every three weeks). I've had 7 infusions and it's working. Last PET scan showed great reduction in tumor burden and my CA15-3 is down to 89. I have lost so much hair but for the most part, since almost no one knows of my diagnosis and treatment, I'm not sure anyone else has really noticed except maybe my husband who says I'm still beautiful, but he's biased. I'm trying not to be self-conscious about it.
With the Enhertu - it seems like I'm either getting used to it, the spring weather is making me feel better, or having the drug working is letting me just plain feel better. In the days after infusion, I am still exhausted and have to be super careful to avoid constipation (miralax daily, stool softeners twice daily). The second week is where I'm seeing energy come back sooner. Usually the third week I feel pretty decent. My tastebuds have gotten more sensitive to spicy foods. And my weight is holding steady. I do have weird skin pain, mostly on my lower stomach and inner thighs, but sometimes my arms. It's a weird prickling feeling and sometimes clothes hurt, even loose fitting stuff.
I did end up with a blood clot from my chemoport. My right jugular vein was fully occluded. Lots of pain. A trip to the emergency room. I'm now on blood thinners until at least mid-June. Not realizing that that blood thinners could make one lightheaded, I had a spell and wasn't smart enough to get low to the ground and passed out, faceplanting in the kitchen. My poor husband - I'm evidently not cooperative after coming to - I wanted to get right up like nothing had happened and passed out again. Nothing broken. But another trip to the ER to make sure I hadn't caused a brain bleed. So much fun.
I also have a spot on my thyroid they're watching. And discovered a basal cell carcinoma on my nose that I have to have Moh's surgery to remove in mid-June.
I did have molecular sequencing done in July. I have clinically significant variants of PIK3CA and ESRI (x2), potential significance in ERBB2 (HER2) and TP53 genes, and copy number gains in CCND2, FFGF3, FGF4 and FGF19 of potential clinical significance but have a low Tumor Mutational Burden. My oncologist explained all that back in August, but other than knowing it opened up one or more possible treatment lines (including the Enhertu) and she said she'd probably want to do another biopsy and have the sequencing done again at some point down the line, I'll readily admit most of it went over my head.
Anyway, that's my update. I have an echocardiogram and infusion next week. Next PET-CT scan is at the end of May. Then the Moh's surgery for my BCC on my nose. I guess I don't feel much like an imposter most of the time these days… I am grateful for this site and all of YOU being here, even when I am hiding under a rock. I hope all of you are tolerating treatment and receiving news of stability or improvement!
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@vermonster, thank you so much for the update. We’re truly sorry for all that you’ve been through, and we're so grateful you took the time to share it with us. Please don’t worry about going quiet, we completely understand, and we’re just really glad to hear from you. Come back anytime you feel like sharing or need a place to vent. We’re here for you, always.💖
The Mods
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@vermonster Hi! I searched for info about hair thinning and found myself on this topic. I read through it and just had to respond to you. I was diagnosed de novo stage IV this past Jan. No family history, no mammo evidence but learned bout my situation after getting ct scans to see if I had pneumonia. They found cancer in the pleural effusion surrounding my lungs (reason I was having trouble breathing and coughing), plus cancer in my lungs, my chest lymph nodes and, in their words, innumerable sclerotic lesions on bones in my upper body. WTF?
I feel like an imposter too. Due to the spread, I did not have chemo, radiation or surgery (they can’t really find a breast tumor!) I look great since last year, when I was unknowingly growing all this cancer, I lost 30 lbs to prevent the diabetes my father had. I look better now than I have in years. My family, adult kids and friends are as confounded as I am. My daughter and girlfriends are freaked out that I had no symptoms - it can happen to anyone.
I am now on Kisqali and Letrozole. I learned the hard way that I have be more cautious with my public outings - in past 4 months I caught a stomach virus, a parainfluenza virus and a difficult flare up of my diverticulitis. These have caused me to take Kisqali vacations while on antibiotics. Not good for fighting as hard as I can! Plus, I get thrush every once in a while now. I am truly immuno-compromised. My side effects are mostly invisible to outside world (other than getting sick). I have very low WBCs and neutrophils, astronomically high CEA and CA-15 counts, body aches, trouble sleeping, some brain fog and hair thinning. I am 65 so the hair thinning is probably expected but not by me! I love my long thick hair and this troubles me a lot.
But, I feel well enough to enjoy my life even on this treatment. In fact, I am going on a trip next week to Vancouver and then a 7 day cruise to Alaska and then a week in LA visiting family. I have been smart and have layed low for last few weeks. I, my friends and dear husband (DH) plan visits in houses and/ outdoor activities so I lessen the chance of catching anything. I will wear masks on the plane rides and where ever I feel there are too many people. Thankfully this trip entails lots of outside adventures! So looking forward to it!
So, bottom line, I recommend doing as long as you can do and make your life as fun and adventure filled as you can. We do not know what’s around the corner anymore so let’s get it all in… just in case.
Keep in touch! Juliana xo0
