not taken seriously due to age, hopeless

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Ckdreamer23
Ckdreamer23 Member Posts: 1
edited March 2021 in Not Diagnosed But Worried

Hi I'm new to this site but I do have knowledge of this disease, as my Grandma had breast cancer twice, and I was by her side the entire time. And by the way, she kicked its butt! So don't give up and stay positive:) Us woman have eachotther:) And men of course, just not so common. Okay leave it to me to get off subject before I get on lol.

Im actually here for a concern and honestly a frustration in hopes of advice (I read the rules and I understand this site is not to replace medical aid, nor to get straight answers, only for questions and suggestions as well as support, and shared experience to ensure no one is alone during their journeys etc).

So ill start with my age. Im 29, about a year and a half ago I practically had to beg my doctor to refer me to a specialist because I was have sharp pain in my right breast. I did a self check in the shower and right where the pain was I felt a hard lump. I encouraged myself not to go into panic because I know woman get cyst and other such growths, swollen lymph nodes etc. But I also heard my Grandmas voice saying "If you have to wander that's when you go in, don't wait to confirm something is there. My doctor for some reason was reluctant, I don't think he took me seriously one bit. Finally along with some eye rolling he referred me.

I went in about a month later, and right away I was treated like a girl that probably went on google one to many times and thinks the sky is falling on me. I was ordered a mammogram and an ultrasound, they skipped the mammogram, and just did the ultrasound. They said be cause of my age and not having children I had very dense breasts so it was hard to see anything on the ultra sound. They also said gils get pain in their boobs from hormones, especially when their cycle occurs. (gee thanks)Then they said to come back when I was 40, that's usually when woman start coming in.

I went home feeling rather discouraged. You wold think I would be happy that I was told nothing was there but that was quite the opposite. I felt like I was treated like a child, and I felt almost hopeless. I knew I felt something there, I found it do to the sharp pain I had been having in that location. Yet wait til I'm 40? I felt they had diagnosed me before they examined me.

almost a year went by and that sharp paid had gotten worse. I would be standing just fine then suddenly a sharp stabbing pain. It also hurt to lean forward, like that spot was a hundred pounds. like a rock was trying to break through my skin from the weight. Let me just add I'm only a B34. I made a doctors appointment and begged my doctor to refer me again. It was literally like pulling teeth. After harsh criticism he finally said ok. A few weeks later I was back at the center. That time they gave me a mammogram as well as another ultrasound. This time, they did see it and felt it. Barely, and it took a minute. But they did find it. Thank God I thought to myself. That relief quickly faded.

They remembered me from a year ago, and this is what came out of the doctors mouth. " You say you felt something last time according to you but our records didn't find anything. Now there is something there though" I cant word it right but basically he said this finding was new. I went from relief, now maybe they'll take me more serious. To wow. I didn't think it was possible to make me feel more dumb then last time. I mean of course I felt something, not only is your finding exactly where I had claimed I could feel something, but I came back in because that same spot has been causing great pain and the lump felt larger.

He said he didn't want to do a biopse quite yet, and they wanted to watch it for 6 months to see if any change happened. They weren't quite able to make it out what it was, not a cyst, not a lymph node, but possibly a benign tumor. Now this would not have worried me, if it weren't for the fact I myself felt this over a year ago, and it has grown.

The anxiety I had after that was daily. I didn't understand why people say early detection if it means to detect early treat later.After a few months the pain worsened and Finally I told my doctor I wanted to go in sooner so I went 4 months after the last visit. 6 months just wasn't happening.

This time, he defiantly confirmed something was there. Wasnt difficult to find. And it was more visible on the ultrasound as well. So it went from non detectable, to slightly detectable, to very detectable. He still isn't quite sure what it is, but again, he wants to watch it for 6 more months. What are we watchin git for, to wait till he can confirm something bad? I just don't understand. We keep saying watch it when each time we have watched it it has gotten bigger. It causes me pain. My shoulder has a sharp pain right under my shoulder blade and I'm not sure if its from that but i think its linked. Like maybe because I try not to flex the side due to the sharp pain so its straining it or something? my shoulder blade has started to raise and stick out. My nipple is sometimes inverted which I just read on this site is a symptom. I feel almost sick to my stomach when i think about what they might find 6 more months from now. Ive done everything I'm supposed to, and the place i go to is the best braest center around, with all new technology. they just redid the entire bulding and people travel from all over to go there. So why do I feel like I'm alone. I feel like my body is telling me something, and Im just sitting here doing nothing about it. I would feel okay, I trust doctors, but when they don't trust me to trust myself then what? If he doesn't know what it is and every time he decides to watch it, and it gives him a clear answer, why continue to watch? my paper work from each visit goes from nothing found, to likely benign, to come back its very important to follow up because early detection is crucial. I almost feel like their covering there butts while also still doubting anything is wrong. they keep saying I'm young, but they should know age does not matter especially with my family history.

I guess what im asking is, is my experience normal? Is this how its supposed to go and im overthinking? or are they assuming and underthinking? I am trying to be my own advocate and no one hears my. well they hear me but they arent listening. My healthcare is for they place only unless i travel hours and that's if i can beg my doctor. Im very limited where im at. and i know people will say second opinions are always good, and i agree completely. but before i go through that hassle, can i just seek advice, experience, anything. By advice i don't mean direct medical advice, again, I know that is not what this site is for, I mean i feel lost and im at a standstill. My mom past from covid last month and I don't know what to do, she is usually who i go to. so please, anything helps.

ps: sorry i talk way to much, sad thing is, this was me trying to get to the point. they more detailed version probably would have turned into a novel.

Comments

  • LaughingGull
    LaughingGull Member Posts: 560
    edited March 2021

    Hi there,

    I had benign cysts (fibroadenomas) showing up in ultrasound when I was your age. Those didn´t look concerning to the dr, because fibroadenomas look round and very different from cancer, and they are not a precursor or risk factor for breast cancer, also they were movable. Still, they removed one of them and biopsied the other one to confirm it was benign, right away, without waiting 6 months.

    I also had very dense breasts, and all my life had breast pain right before my period, that was in both breasts.

    Fast-forward 20 years and, at 46, I started having the same type of pain, but only in one side, and not correlated with my period anymore, and more of a stabbing pain. That was breast cancer. It was dismissed, because breast pain is normal, and because nothing showed in the 3D mammogram, or in thorough exploration by breast surgeon. Three months after my last 3D mammogram and exploration, I found a lump in my underarm and a big palpable mass in my breast, this was my cancer, which had already spread to my lymph nodes.

    I would say you need to push to have the cause of your lump and pain thoroughly, 100% explained. You are right to be concerned, and you are right to want to get to the bottom of it. If they prefer to wait six months, do they give you a reason why (eg something that makes them feel very confident that the lump is benign)?

    I would go back or call them, tell them your grandma had breast cancer and you don't feel comfortable sitting on this, waiting for it to get worse, if there is any suspicion this is breast cancer. I would also tell them that you feel they are dismissing you because you are young, despite of what look like concerning symptoms -if they think your symptoms are not concerning, they should be able to explain thoroughly why; I would also ask them if they would wait six months if you were 50.

    Best of luck and let us know how it goes

    LaughingGull

  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited March 2021

    Ckdreamer -

    You're not alone. I'm much older than you, was treated at one of the top centers, and can't tell you how many times I had legitimate issues ignored. One doc actually said to me they didn't act on what turned out to be a very serious complaint because "patients often imagine their symptoms." And, in their defense, that can happen, especially when we're in an emotional state. However, you deserve to be heard.

    As LaughingGull said, there can be other causes. My oncology PA thought my breast pain might due to fat necrosis, despite the spiculated margins they could see on the mammogram.

    My suggestion would be to tell your doctor(s) and the facility you want a copy of all your medical records including clinician's notes. This is your right under HIPAA - they usually have you fill out a written form, and sometimes charge a nominal fee for copying. Read all of the records - they will will give you a better sense of what they are thinking. And if you request the mammography and ultrasound images as well as the written reports you can send them to one of the larger oncology centers for a second opinion.

    Whatever is going on, it sounds like your are in both physical and emotional pain, and need answers you feel comfortable with. Wishing you all the best.


  • jhl
    jhl Member Posts: 333
    edited March 2021

    Hi,

    First, condolences on the loss of your mother. I'm in California as well. Can you tell us where you are located? I am unclear if you have had a mammogram or not. Are you able to get your reports from the ultrasound? The radiologist will have a written report of what each ultrasound actually revealed. It would be helpful if you can share that. If you have had a a mammogram, the radiologist will have reported a BIRADS score which will indicate how concerned he/she is about going to a next step.

    As far as pain, yes normal breasts can cause us pain & yes anxiety about why can increase our perception of pain. However, that does not mean you should not be able to follow through with diagnostic procedures which might reveal the cause of that pain. I agree with Rather that you need to get the copies of your reports or obtain them via your patient portal as your first step.

    Keep in touch,

    Jane

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2021

    CK - I to offer my condolences about your Mother's passing.

    Like everyone said, first step is to get copies of ALL your reports. Then, yes it would help to know where you are in CA.

    Have you had children? If so, did you breast feed?

    Is this a breast center you're going to? Or at least a breast surgeon or experienced GYN? There doesn't seem to be much good arguing with the same doc every time so your best option is to go for a second opinion &/or find another doc. Clearly you don't believe what this one is telling you. In any case, you will need copies of all your reports. Are you by any chance close to an NCI cancer center? Wishing you good luck.

    https://www.cancer.gov/research/infrastructure/can...


  • Rah2464
    Rah2464 Member Posts: 1,647
    edited March 2021

    CKdreamer I am so angry on your behalf because your condition is not being addressed. You have lived with pain for a significant period of time that needs to be resolved for you if possible. Doesn't mean it is cancer, we all get that, but I bet if you had a lump somewhere else causing that amount of pain someone would remove it. Just because it is in your breast and you are younger, this is pain written off and that is so wrong. I remember how painful cystic breasts could be, and had several drained as a result. When I was thirty, I discovered a lump and I remember clearly my (male) GYN being so dismissive stating that only older women get breast cancer. His response was very daunting, and made me feel like I was being an irrational person asking about what I should do next. So I found a female breast surgeon she reviewed my films, then performed an excisional (benign) biopsy. I then formed the rest of my care team around women that would hear me. It is perfectly normal to want an issue such as this to be resolved in some manner, in a reasonable time frame. Yeesh

    You have been given some good advice here, obtain those reports and keep pushing to get some relief. I am sorry you have to fight so hard to be heard but you keep on doing it. Please let us know how things go. Hugs

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited March 2021

    Just wanted to say there is some great advice here. I'd get the reports and I'd get a new doctor. Even if the lump is benign, you should have a doctor who is willing to listen to you and take your concerns seriously and able to communicate better with you.

  • LivinLife
    LivinLife Member Posts: 1,332
    edited March 2021

    Welcome Ckdreamer! I agree with getting a second opinion... It is bad enough your concerns are being dismissed and without any real explanation of what they think is going on, why they think it's ok to continue waiting and while you continue being in pain. Inexcusable!

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