Hi! Newbie here! Just wanted share, a lil'

LoveLaughHope
LoveLaughHope Member Posts: 4 Member

Nice group! I joined for information and to tell my strange story.

Its been 2 Yrs later I feel like I'm still in the Twilight Zone, still waiting to wake up (that isn't going to happen.) still scratching my head. OK, in 2018 I felt two lumps on the very far right side of breast, Told doctor, went for a mammogram. They did ultra sound, found a few masses but wanted to watch and see if they grow. Moved in 2019, then the pandemic and then the other pandemic and whatever else came after that… wasn't able to go to my routine mammogram until 2022. That's when I found out about the cancer.

The thing that baffled me was they found it in the left breast (nodes)not the right side with the lumps. My antennas did go up. As soon as I was able to see the Breast Cancer specialist, I asked her to check the right too because of the lumps. She felt them and told me it was probably from and infection. So I went ahead and had the left side done, surgery and everything. About 6 months later I did not feel comfortable about these lumps, so I almost had to beg for another mammogram and then ultra sound. Yup, you guessed it, it was in the left side nodes. It way worst then the left side.

12 nodes removed 7 cancerous

What has me baffled is why didn't my doctor check the other side knowing I was already having issues? Why didn't she listen to me the first time, my quality of life may be better. I think that's what haunts me the most. The cancer, I'm dealing with and I feel I still have a long way to go.

I m a private person and I hope this wasn't TMI but I just had to get if off my chest.

Thank you

Comments

  • olivesew
    olivesew Member Posts: 20 Member

    Hi, just read your post. I agree with you that you should have had more tests early on, when you suspected something was wrong. I think a lot of medical treatments are run like an assembly line. I hope your care in the future is more comprehensive. I, too, feel like I am in the twilight zone, after 2 years. But for different reasons. I realized too late that the radiation center I went to was evasive with answers, and gave as minimal information as possible, leading to my having a panic attack when the machine rotation abruptly changed from what I had come to expect, and it was because once a week, they do an extra set of xrays, called port films, and to do them, they rotate the machine in reverse, but keep these secret from patients. As they told me later, "We can't tell people about these things as they get scared and don't show up for their appointments. " Is this professionalism? I thought they had completely changed my treatment because it wasn't working. I can still feel the panic in the pit of my stomach when the machine wasn't doing what I thought was my routine treatment. The. "understanding" doctor told me I was criticizing because I got scared. Later when I asked a question about something on my schedule, I was told "I knew that would freak you out!" The whole experience involved confusion, even into interactions after treatment finished.

    What I have learned from this is to trust my instincts. If I am getting bad vibes in an office, run as fast as possible to a different doctor. And make a formal complaint about unprofessional happenings.

  • Sergai
    Sergai Member Posts: 9 Member

    I feel bad for you. So far, I've been lucky. I had a mastectomy on my left side and 1 of 3 nodes positive. That has been 3 years ago. The oncologist at Dartmouth had me do a CT scan of my entire chest area, which made me feel better about my diagnosis. Of course, since doctors are scarce here in Vermont, my primary care is a Nurse. Since I'm a male, the first time I mentioned a lump, she felt it and said I should keep an eye on it to see if it changes. At the next visit, 6 months later it seemed the same, but I asked to have it tested. That is when I was diagnosed with breast cancer. Maybe I wouldn't have had any positive nodes if I tested earlier, but I'll never know.

  • rugershay
    rugershay Member Posts: 1 *

    I am on Letrozol almost 5 years now and want to be done. Had grade 1 estrogen positive HER2 neg cancer. Comments on being done with drug at 5 years. Hopefully my dr. Agrees. My bone density has gotten bad, especially in back, and I fell and had a small fracture in my back. I’m thinking continuing drug is not warranted. Any comments.

  • LoveLaughHope
    LoveLaughHope Member Posts: 4 Member

    Wow! Really?🙄I thought I was the only one in the world who have had (not so good experience.) Of course not, duhh!😉Thank you so much for sharing. I'm horrible at remembering what type I have probably because I don't want to remember, you know how our brains do that phycological thing for coping. I believe its Her2/ metastatic/high risk for return. Forgot the negative or positive and I have lymphedema on right upper area. Have to wear compression stuff. However, I feel a lot better on dealing with my cancer. It's tuff but I'm a fighter! 😷🤩 I currently take ( I have no idea how it's spelled Onastol… and Verzenenio.) That Verzeneion is a beast… I learned to be thankful that I wake up on this side of the grass🙃 and deal with the medication and pray its working!

    😉

  • LoveLaughHope
    LoveLaughHope Member Posts: 4 Member

    Isn't that weird? We know our bodies and how they functions, but yet, some doctors are pretty good at not listening to us🤔When you find a good doctor, keep em'

    You are awesome and thank you for sharing your experience!😊

  • LoveLaughHope
    LoveLaughHope Member Posts: 4 Member

    REALLY? That's amazing! I'm going to watch for the bone density stuff😏 I would never tell anyone not to take any medication that's scribed by a physician. However, I would get a second or third opinion to make me feel better. If you can't afford it there are many organization that can help. This incident wiped me out, two seconds from being homeless, that was the scary part. I was admitted to the hospital every other week and I knew the nurses by name. I couldn't work or do anything but recover! Bills still showed up even when I was sick😜

    I'm in a better place now and I am so very thankful!😃

    Thank you for responding… I really really appreciate it.

  • tarams602
    tarams602 Member Posts: 21 Member