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10 years since my 3rd cancer
Hi. I am almost to my 10 year cancer free anniversary. I have my first breast cancer 18 years ago and thyroid cancer 16 years ago. My question is this: should I have a check up even tho I have had a double mastectomy with trams flap reconstruction? It has worried me for many years that they I was diagnosed with 2 breast cancers the first time and the second time not only was I diagnosed with with another breast cancer but found in my other breast they removed I had more cancer growing they told me I was basically cured since I had a mastectomy. No more treatments no more doctor appointments nothing. If I am worried I can come see them but it would be only to ease my mind. To me, I feel like that just doesn’t seem right. Never has. Even people who learn my story are like are you sure they shouldn’t be watching you? So finally all these years I decided to check to see if anyone else has faced this and might feel the same as I do. I caught all my cancers early. Nothing beyond stage 1…so I never chose chemo. Only radiation. The first time I was 37 and in a gray area. So we decided to do just tamoxifen and radiation. It hadn’t spread and the other was still encapsulated. Then when I was 46 I had just dcis but they had me doing tests every 6 months so it was caught early. It was 4 mm when they found it but by the time they removed my Breasts it was 2cm. But I was considered cured and no further treatment or monitoring tho my other breast showed cancer growing and my breast doctor told me she was happy I finally took her advice to do the mastectomy because I really didn’t want to because I was single trying to survive and had no idea how I could take so much time to heal. But now I worry that oncology told me I was basically cured but my breast cancer wanted me to follow closely with them because she thought it was the right thing. I never went back to her or let her know they didn’t want to see me. Should I be following up with someone? Sometimes I think I feel something but then it isn’t there and I know a lot of that is my fear of reoccurrence so I don’t check myself much because that fear is crazy. Just wondered what other women do. Thank you!
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Hello @mssuzi01 welcome to connect, where you can meet up with other patients and we can learn from each other and support each other.
This is just my two cents but my brain started to vibrate when I read your story.
It is ultimately our choice if we want to monitor or not, but hoping I could outrun this thing and not monitoring for a few years did not serve me well. Kudos to your oncologist who said “follow closely”, and shame on the doctor who said “cured, no follow up”. It should have been made clear that it was no follow up with the surgeon needed because you would be monitored closely by your oncology team.
Please find an oncologist, or talk your primary care doctor for a referral and just get a good “cancer check up”. Then you can ease your mind and get back on track. If I did the math correctly you are not yet 60 and should have a lot of years left to live with your decisions and early cancers are much easier to live with.
Do you have a primary care doctor that can refer you to someone for cancer care, maybe with some urgency since you feel something going on? Since I have been in your shoes, I need to ask how you are doing?
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3 ReactionsJust completed five year drug treatment. It detected small pea sized lump in opposite breast in April. PA said it was a cyst.
But at December spot. Doc said it was an inch but still cyst. They didn’t think it was a problem.
But it’s not their life!
I asked to be seen again and will pursue this until I feel comfortable with the conclusion.
My original DCIS didn’t show up on mammogram but on MRI six months later.
Don’t be afraid to get answers if you are concerned.
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3 ReactionsYes, definitely have check ups. I had stage 1 BC at 54, 7 mm. BRCA-2 mutation so I opted for a double mastectomy. No other treatment. No reconstruction. They monitored me closely with a couple breast MRIs then ultrasounds first every 6 months then annually after 5 years. I was told they can never get 100% of the breast tissue and there was a 3-5% chance of recurrence. 7 years later I found a marble sized hard lump on my chest. It was more BC in the chest wall and part of the pectoral muscle. I had surgery, 47 radiation treatments and have been on Letrozole and Kisqali for 5 years. I’m doing well. No more tumors have popped up. They just stopped Kisqali. We’ll see how that goes.
I have a friend who had a double mastectomy at 35. She’s in her 70s now and has never had her BC return. The odds are better that you’ll never see it again, but be vigilant so you catch anything early. Best to you.
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4 ReactionsI was diagnosed with stage 1 right breast cancer in 2020. I have a history of very dense small breasts with a history of benign breast tumors and cysts in both breasts. In 2024 I had my yearly Diagnostic mammogram, of my left breast. A cancerous tumor was found. I was given a breast MRI for the first time in my life, to see the extent of the new cancer. It was stage 1, but it is a much worse, fast- growing type than in my right breast. I was told that if I had had a breast MRI in 2023 the cancer would have been found a whole year sooner. But it just isn't part their protocol. It enrages me.
More tumor cells were unleashed into my system during that time. If I had a little more money, I would have a no- contrast, MRI of my trunk area once a year. A person can negotiate a price. Private Open-MRI clinics are supposed to be the cheapest. They rather get your money than not be making any money for 45 minutes. My care is now is either my N.P. or I feel a localized lump on or near my mastectomy sites or nearby lymph nodes, OR I report to them when I have, basically, terminal signs: yellow skin because of liver cancer, pain in my spine because of bone cancer, pain in my lung and breathlessness because it has spread to my lungs. With an MRI once a year, maybe I could find it at stage 3. With the new blood test, RGCC test, which I would have to pay for also, I might have a fighting chance. Please anyone who can afford to pay out-of-pocket less than $2,000 a year, think about adding this to your care. And give input here. I Am Not Cancer Free. No one is, until there are vaccines. vacinecancercoalition.org
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3 Reactions@colely It Is cancervaccinecoalition.org.
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2 Reactions@colely
I’m so sorry your breast cancer is back. I can’t believe they still do not have you getting some type of imaging regularly. Everyone seems to have a different protocol. My recurrent breast cancer came back 3 times as aggressive as the original. I’ve always had regular imaging ordered by my oncologists. I still have a chest CT every 6 months (although I also have neuroendocrine lung cancer). But I also had abdominal and pelvis CTs every 6 months for 4 years until this year they stopped due to radiation exposure. He thinks cancer cells likely got away before the tumor was removed from my chest wall but you know that’s just a wait and see since it takes about a billion cancer cells together to be seen on a scan. I took Kisqali for 5 years and will be on Letrozole for life since my BC is highly hormone driven. I’m glad to be off Kisqali for a few weeks now but it’s also a little scary to go off. It’s hard on the body and it’s nice to see all my blood counts back to normal now. I had a negative breast MRI and negative Signatera test before going off Kisqali. I pray that none of us will see another BC tumor. ❤️
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