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Ongoing breast issues. Possible Masectomy


I wrote here in 2020. If your interested in reading my anxiety induced post feel free to look at my history.

I will try to make this short. In 2015 my left breast started to feel different. My left nipple would be erect while my right was normal. The shower, hugs, and tight bras would hurt. The moment I noticed this I got an ultrasound and it was negative. This plagued me because a nipple that is constantly out to the point that I get joggers nipple only on my left breast is very concerning to me. Had another ultrasound in 2017 which was negative.

I have two aunts and a cousin who had cancer. My aunts had breast cancer and my cousin had lung cancer but if I remember right people said her primary was breast so I am not sure her dx.

By 2020 my breast symtoms worsened, I was carrying my boob around with how heavy and painful it felt everyday. My shoulder started popping out of place and my whole left side hurt. My rib cage and above my breast. I also noticed that every time I stepped out of the shower my left breast would feel numb. I researched because I was desperate and found an article with a woman describing all of my symptoms. She was dx with lobular cancer. It didn’t show up on imaging. The only reason she caught it was because a nurse offered to do a tissue aspiration and check out what was happening. She had just had an MRI. She had symptoms for a year and said if they had not caught it she wouldn’t be here.

I have been struggling with this for 5 years at this point. I did more research and found out about lobular and how hard it can be to image and that it can be a slow growing cancer. I did all the tests and was sent on my way and told not cancer but I was so scared and lost.

In 2021 I stated physical therapy for fibromyalgia and the pain and the heaviness in my chest went away, my shoulder feels better. I try to move on.

2023 my nipple is still sticking out lol… I have to laugh at this stuff and numbness continues. In August my both of my breast were on excruciating pain and my underarms got swollen. My breasts were warm to the touch. Another MRI and mammogram. An oncologist says my lymph nodes are swollen on both sides and offers me a circulating tumor marker test. I declined but I am considering it now. At this point I go to MD Anderson and beg for tissue aspiration. Long story but they didn’t do it. I have asked 4 doctors for this and no one will do it without something to biopsy but I am asking for a tissue aspiration. The MRI found cysts in my right breast and liver cysts. From all the stress of this and other personal problems my autoimmune issues flared up to the point I was bed bound. I was convinced this is cancer and it had spread. Turn out I don’t have fibromyalgia and I am in the process of getting dx with ankylosing spondylitis. As I am doing my research AS mimics breast cancer symptoms because it inflames the breast bone and rib cage. I try to accept this and move on.

2024 more physical therapy and lots of pain in my lower back and SI joint which are getting better everyday with activity.

Yesterday I was overcome with a huge wave of fear. I have PTSD from watching my aunts die from breast cancer. My nipple is sticking out and my breast feels numb when it is rubbing against my shirt. I describe it like a light sunburn.

I went and saw a breast specialist in San Francisco in January. She didn’t seem concerned which alleviated my fears. She did however bring up preventative mastectomy because my lifetime risk is high.

I broke down yesterday because of the years of worry and stress just came pouring out and the mastectomy seems so scary, I cried for hours. This has weighed so heavy on me in the last almost ten years. I am scared they missed something and that I have a slow growing cancer in my breast. Lobuksr cancer is so sneaky from what I have read.

I am not sure what I am asking for. Any support or insight would be truly helpful and greatly appreciated ❤️

I want to add today is a much better day than yesterday. I emailed the breast specialist team in SF and requested an appointment. I am going to take a deep breathe and just let it go as best as I can while I wait.


  • waves2stars
    waves2stars Member Posts: 141

    Are you having regular input from a counselor or therapist? Have you had consultation from geneticists?

    I don’t mean to sound unkind, but having a mastectomy just because you have health anxiety, even after a visit to MDA, seems over the top and not normal. What makes you think a mastectomy will solve your anxiety? There will always be a small possibility that cancer is left behind in the chest wall of tissue, and you won’t get mammograms, even with a reconstruction, for surveillance for actual breast cancer. Even with a breast cancer dx, it is extremely difficult to get an oncologist to order a pet scan, and pet scans don’t accurately dx breast cancer recurrence in reconstructed tissue. All of this to say, you are not going to get to a zero chance of no breast cancer, or a guarantee. The anxiety and uncertainty will likely stick around.

  • dimples90
    dimples90 Member Posts: 16


    I was wondering how you were able to see an oncologist without a cancer diagnosis. You mentioned having swollen lymph nodes and an oncologist offered to do a circulating tumor market test. You declined it.

    I read all of your posts on another thread from 2020. Sorry you are dealing with this since 2015! However, I tend to agree with waves2stars, maybe you need to seek therapy for your anxiety. A mastectomy is a big step.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166

    hi there! I too am sorry you have been dealing with this for so long.

    Did you ever do genetic testing? I carry a genetic mutation for cancer. I had a mastectomy because I had cancer. A mastectomy is honestly brutal. It’s like an amputation. Your chest will never feel the same way. You are very tuned into your body. My entire chest has little feeling. I have no nipples. I don’t wear a bra because my reconstructed breasts don’t move. My breasts feel very firm. They don’t give me pleasure. My cancer and mastectomy have greatly impacted my sex life. Hugging others feels strange to me because of my reconstructed breasts.

    I have two daughters who could have inherited the gene I have and they also have a strong family history of cancer. They watched me fight cancer and they watched their beloved aunt die from cancer just 3 years after I was diagnosed.

    I share this all with you so you know as a family we have not discussed a preventative mastectomy with my daughters. It’s hard for me to imagine removing a healthy breast, a healthy body part.

    I truly do feel for you. I would get genetic testing and do some tumor markers if that has been offered. I would continue to live you best healthiest life for you focusing on chasing joy and happiness because life is too short.

  • superdayz
    superdayz Member Posts: 28
    edited July 8

    I am in therapy and have been for many years. I think autoimmune issues are a different kind of beast. I can’t describe the mental torture but this not having a final dx for years takes a toll on anyone’s mental health. I didn’t add about the frequent fevers and night sweats and multitude of other symptoms for the sake of brevity.

    I was offered a preventative mastectomy because of my lifetime risk. I wanted to go ahead and do it as it would alleviate this fear which is very specific due to watching three family members die all before the age 45. I don’t fear other cancers or illnesses.

    Dimples90 I declined the test because I was going to MD Anderson. The test is 4,000. Not a light decision. I was able to se him because my husband researched and made the appt and paid private instead of through our insurance. It was a Russian doctor and he really lifted my spirits and made us laugh joking and saying maybe I just needed some vodka haha he was amazing. I would like to go back to him for the circulating tumor test. I have had all genetic testing done even for connective tissue diseases and all are negative.

    monarchandthemilkweed thank you for sharing. It truly does help me hear stories like this because it balances out some of that black and white thinking. It does indeed suck but most of my time isn’t spent worrying anymore just waves of fear and panic and then I push through it because I can’t stay stuck there. Yes I agree, life is too short, all of this health stuff has taught me valuable lessons on gratitude.