Fill Out Your Profile to share more about you. Learn more...

Negative exams but symptoms persist!!!

Options
Crystal38
Crystal38 Member Posts: 7
edited May 2021 in Not Diagnosed But Worried

Hello. I'm 39 years old. Last December I felt an extremely painful big lump in my right breast, on the first day of my period,about the size of a nut. A few days later I had an u/s which showed a 14mm lump. I went in 3 breast surgeons. They examined me and I had 2 new u/s. The lump was now 9mm. They told me not to worry and reasurred me that this is something bening-cancer doesn't get smaller, and related to my menstrual cycle. The diagnosis was "focal adenosis". 2 months later, although smaller, I could still feel it. And it was sensitive before menstruation. I went to another breast surgeon. I had a mammography and a breast mri. They were negative, in fact nothing was seen, absolutely normal. In the new u/s the "lump" (now it has became flat) was 4-5mm. It was characterized bening. Now, 3 months later, I can still feel it. And it is still sensitive before menstruation. I also have a weird sensation in this breast. And a new spot of sensitivity has occured before my last period, a little higher than the first one. I couldn't feel any lump though there. It stopped hurting 2 days after I had my period. I went to a gyn, I had a breast exam and she couldn't feel anything! After my ovulation this month, I feel the same pain again! And the old lump ofcourse, which feels more like a thickening than a lump... I don't know what else to do, I think I'll go crazy...

Comments

  • moderators
    moderators Posts: 8,089
    Options

    Crystal38, we absolutely understand how nerve-wracking changes to our bodies can be.

    Here is the definition of Adenosis. By what you describe, it seems to come and go, or does the "old lump" remain?

    (from the link above): https://www.breastcancer.org/symptoms/benign/adeno...

    Adenosis occurs when some of the lobules (milk-producing sacs) grow larger and contain more glands than usual. If the enlarged lobules also contain scar-like fibrous tissue, this is called sclerosing adenosis.

    Adenosis may cause a lump that you or your doctor can feel. It also may show up on a mammogram as a distorted area, a mass, or calcifications, the small white calcium deposits that are sometimes associated with an underlying breast cancer. A biopsy is needed to tell the difference between adenosis and cancer. With a true adenosis, any increase in breast cancer risk appears to be slight.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    Options

    Lumpy painful breasts can be perfectly normal breasts. 60% of women have fibrocystic breasts, which often is associated with lumps in the breast tissue that come and go.

    If I understand correctly, you have seen 3 breast surgeons and your gyne. You've had 3 ultrasounds, a mammogram and an MRI. The lump that you feel has been seen on ultrasound imaging and has gone from 14mm to 9mm to 4-5mm and has gone flat. The pain you experience is cyclical, tied to your periods.

    Do you have copies of the imaging reports? How is the lump described on the reports? What is the BI-RADS rating on each of the reports?

    However the lump is described, the fact that the lump is getting smaller and the fact that your pain is cyclical strongly suggests that this is a benign lump, and not cancer. As you have been told by at least one of the doctors, cancer does not react to your periods, and cancerous lumps do not get smaller. Despite the post above from the Moderators, my guess is that your doctors do not feel a biopsy is necessary precisely because the lumps has been reducing in size. A cancerous lump would never do that. This is why sometimes follow-up imaging is recommended instead of a biopsy - if the second imaging shows a reduction in size of the mass, then a biopsy is not required.

    I think you should trust the many doctors you've seen. Not all breast lumps are a problem - in fact about 95% of breast lumps are not serious. And breast pain more often is related to benign lumps rather than cancerous ones.

    It sounds like you have annoying painful fibrocystic breasts. And that unfortunately is normal and something many of us have to live with.


  • Crystal38
    Crystal38 Member Posts: 7
    Options

    Thank you for your answer. Yes, the old lump remains. But it changes texture. 1 day before period it inflates and hurts. 2 days after, it deflates and it's hard to find. After ovulation it gets harder and easier to find. I also feel very little shooting pains there after ovulation- most of the times somekind related with hand movement. The mammogram and breast mri showed nothing at all. As if it isn't there. And I feel it nearly 2cm long.. But somehow flat.. I have very small breast, that's why I can feel changes with such detail I think.. It's driving me crazy though, I keep waking up at night sweating and feel terrified...

  • Crystal38
    Crystal38 Member Posts: 7
    Options

    Thank you so much for your answer Bessie. The thing is that the new pain made me worry so much. I think "why in the same side" "why so close to the existing lump"? The birads of the first u/s is 3, and for the last 2. Mri and mammography 1.

  • kathabus
    kathabus Member Posts: 45
    Options

    It sounds like you've had multiple ultrasounds, a mammogram and even an MRI. You've seen a number of doctors. If after ALL that they say you're ok, odds are you're ok. Most of us...maybe all of us....found breast cancer with an ultrasound, a mammogram or an MRI. You've had all three, and nothing warranted a biopsy. That's good!

    I would be diligent about getting your annual mammograms so that they can compare them year over year. Other than that, I don't think there is anything more you SHOULD be doing. Maybe reading up on Adenosis, as suggested above, may help. Breasts can be "busy" and it sounds like yours may be. Fortunately, it doesn't sound like anything alarming is going on.

    Take good care.

  • Crystal38
    Crystal38 Member Posts: 7
    Options

    Thank you for your answer kathabus.

    I've made an appointment for a new u/s tommorow. I can't get it out of my mind. I can feel it. Like a quite big thick mass. Something inside my head tells me "this is cancer". In fact, shouting...from the begging. And I am so regretted that I didn't insist to have it removed 5 months earlier. I worry that precious time was lost...

    I'm so freaking worry... I have a 12year old daughter and a mother with various health issues...who will take care of them if something bad happens to me?


  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    Options

    Because breast lumps and breast tissue thickening can be a sign of breast cancer, women have been misled into believing that all breast lumps and breast thickening are breast cancer. That's simply not true. All breast lumps and breast thickening needs to be checked out, but most often, the cause is something common and benign. I've had lots of palpable breast lumps, and none were ever breast cancer. And for 40 years I had an area of thickening that around my period always felt like a lump, and yet it was normal breast tissue. I've had breast cancer, and it was completely unrelated to these lumps and this thickening.

    Fibrocystic breasts

    https://www.mountsinai.org/health-library/diseases-conditions/fibrocystic-breast-disease

    Fibrocystic breasts are painful, lumpy breasts. Formerly called fibrocystic breast disease, this common condition is, in fact, not a disease. Many women experience these normal breast changes, usually around their period...

    ...Fibrocystic breast changes occur when thickening of breast tissue (fibrosis) and fluid-filled cysts develop in one or both breasts. It is thought that hormones made in the ovaries during menstruation can trigger these breast changes. This may make yourbreasts feel swollen, lumpy, or painful before or during your period each month.

    More than half of womenhave this condition at some time during their life. It is most common betweenthe ages of 30 and 50. It is rare in women after menopause unless they aretaking estrogen. Fibrocystic breast changes do not change your risk for breast cancer....

    ...You may have a lump in the same area of the breast that becomes larger before each period and returns to its original size afterward. This type of lump moves when it is pushed with your fingers. It does not feel stuck or fixed to the tissue around it. This type of lump is common with fibrocystic breasts....

    ...Surgery is never done to treat this condition. However, a lump that stays the same throughout your menstrual cycle is considered suspicious. In this case, your provider may recommend a core needle biopsy. In this test, a small amount of tissue is removed from the lump and examined under a microscope.

  • alicebastable
    alicebastable Member Posts: 1,945
    Options

    Crystal38

    I'm sorry you are having such anxiety. It really worries me when someone says they just KNOW they have cancer when they've been seen by several doctors and received all kinds of imaging and tests. Think of all the years of education and experience combined that those doctors have ! At this point, the health anxiety is what you should be seeking treatment to get under control or you're going to have a major emotional problem.



  • SKWUT04
    SKWUT04 Member Posts: 14
    Options

    Crystal, may I encourage you to speak to someone about health anxiety? I have it. It's awful. A simple ache can become a life-altering disease in my brain. I've had a lot of unnecessary tests, a lot of doctor visits that weren't actually necessary. I was in a place to recognize that it was health anxiety, not actual disease, and I sought out a therapist. I've been in therapy for nearly a year for both general anxiety and health anxiety and even when I do have something "real" pop up - like a recent painful lump in my right breast - I'm able to pull on the cognitive behavior therapy techniques he's given me to pull myself out of spirals. He explained to me how health anxiety is an OCD pattern - you just can't NOT google or look at past test results or visiting the doctor or or or or... - and how we go through a cycle of essentially getting our serotonin hits by Googling symptoms, getting tests, etc. He's helped me A TON.

    So when I did find a painful lump in my breast back in February, I panicked and spiraled into anxiety and worst-case scenarios, but as I said, I could pull myself out of it thanks to therapy. When my mammogram and ultrasound came back as no more than an "island of dense tissue," I was able to believe the results and move on.

    I get what you're going through. You KNOW you're spiraling and yet you can't stop. You can't believe the doctor who knows way more than you. You are SO SURE that there is something wrong. I happen to be extremely intuitive/claircognizant and struggled with separating that gift from health anxiety. But with the right therapist/techniques/whatever, you can find relief.

    Feel free to PM me if you have questions or want to talk out the anxiety.

  • clarebarez
    clarebarez Member Posts: 16
    Options

    Hi Crystal.. sis you are not alone. I also had 2 negative US for my painful breast. I felt it first as a big lump just after my period.. and I observed it for 2 weeks putting warm compress and a muscle relaxant balm. I had to wait coz it will be more painful to do US when the lump is there. So after my period the pain is still there but the lump seems to be gone. My US was birads 3 and have multiple cluster of cycsts on the area where I felt the lump. That was way back this January. Till now I still have pain but slowly become lesser after 4 months. This forum helps me deal with my anxiety so try to relax sis. Wear a comfortable sports bra and stretch your back and shoulders everyday. I will do US again this August to see if the cysts became smaller. It will confirm why the pain is much lesser now. Mine is not cycical. Its painful everyday.
  • Crystal38
    Crystal38 Member Posts: 7
    Options

    Thank you very much for your answers.

    I went for a new u/s and the radiologist saw absolutely nothing. He told me that the pain propably is caused by persistent squeezing, and hormonal changes ofcourse.

    Alicebastab and SKWUT04 you 're propably right... I have health anxiety and I need to have some consultation about it. If feel exactly as you did SKWUT04! EXACTLY like that! I can' t stop spiraling! Ok, maybe for a few days... Only a few... And then the same again...

    Clarebarez do your check as your doctor has consulted you. I'm so happy that you can manage your anxiety. And don't squeeze.. This can make the pain much worse.

    I don't know what the future holds for me, but the positive thing of the story is that now I know how important is to have breast cancer awareness. Before this adventure, it had never crossed my mind. I had a gyn who told me these exact words 2 years ago ( my age 36) : "You have such small breasts that YOU WILL PROPABLY NEVER NEED TO HAVE A MAMMOGRAM!". Yes, you are reading right...And the worst part is that I believed her.

    As for the girls who are dealing with breast cancer and kindly responded to my question, I wish all the best,my mind is with you.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    Options

    Crystal, I'm glad that the ultrasound went well.

    I am going to disagree with something you said. You don't need to have "breast cancer awareness". You need to have "breast health awareness".

    The problem you've had is that you've been too conscious of breast cancer, but not aware of the fact that normal women's breasts are often lumpy and bumpy and painful. Cyclical pain and lumps and thickening that changes over one's cycle are extremely common and perfectly normal, but you didn't know that (as many women, particularly younger women, don't) and as a result you didn't trust all the imaging you've had and all the doctors you've seen. As I said previously, every new lump and breast change should be checked out, but every woman should know that most often, breast pain and breast lumps are not breast cancer.

    You've gone through 6 months of fear because you were not well educated about how normal breasts feel and how normal breasts react to the hormonal changes that women experience every month. That's not your fault, but the fault of the medical community and doctors who don't adequately explain this to young women - not just when they encounter a problem but before they ever experience any problems. Your gyn who told you that you will probably never need to have a mammogram was frighteningly wrong, both in telling you that but also in not explaining what you might experience with normal breasts.


  • Crystal38
    Crystal38 Member Posts: 7
    Options

    Thank you so much Bessie, I wish you 're right...

    ... But, unfortunately I can' t believe it.

    One day passed after the u/s. I tried not to touch my breast and live normally.

    The night before, I saw a dream that many voices were telling me it is cancer. I woke up in the middle of the night so frightened and sweat... I decided to go back to sleep and let it go. I'm used to sleep on my chest. Every time I tried to switch side, I felt something... In the morning, my dog came to wake me up and has put her paw on my breast.. It hurt like this spot had thousands tiny spikes above it.

    During the day, I could not resist and I touched it again.. It is so different from my other breast. I can feel it rolling over my bones when I press it a little. It's about 3 fingers put together wide, quite big.. But almost flat.. Slightly higher than the original lump was I think. And a little sensitive.

    Last night, I saw more awful dreams. That it was a big fire around my house. Round, spiky fire balls were falling from the sky. I could also feel the heat. I woke up terrified again. With that awful feeling that I have cancer and then all night hearing it in my sleep...

    A true nightmare...

    I woke up early. I read a thread here about ILC and found so much in common. Also very hard to detect in several cases.

    The appointment with the breast surgeon is in about a month, in another city so I need to travel there.. I wonder if I should wait until then, or to try to get sooner (though it's very difficult to get an appointment with him).

    I don't know, I have a terrible feeling... That won't go away until this thing gets biopsised..





  • alicebastable
    alicebastable Member Posts: 1,945
    Options

    Your dreams are because of your anxiety, not because of your physical health. My dog pokes me all the time with his paw. If I believed any of those pokes had to do with cancer, I'd have to live at my oncologist's office. Please stop equating your feelings and dreams and dog paw pokes with medical science, research, and education. I'm sorry if this sounds harsh, but that last post of yours is pretty bizarre. I'm more worried about your state of mind than your physical health. Try to not think about imaginary possibilities and do things to distract yourself, please!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    Options

    Crystal, you don't need to believe me about anything.

    But you should believe the 3 breast surgeons you've seen, and the mammogram, MRI and 4 ultrasounds you've had over the past 6 months (I think I counted everything up correctly from your posts).

    Do you really believe that your dreams are more accurate than all of those medical experts, 3 breast surgeons plus all the radiologists who have reviewed all your imaging?

    Suppose you see yet another breast surgeon and because you are so worried, he agrees to do a biopsy (never mind the issue of how he will biopsy something that doesn't show up on imaging). Suppose the biopsy is totally benign, showing nothing more than fibrocystic breast tissue. Suppose that a short time later, as your period approaches, you again feel this large area of thickening and you again experience pain (which you almost certainly will, if your breast pain and thickening is fibrocystic). At that point will you believe the biopsy? Or will you think that it must have missed the cancer?

  • Crystal38
    Crystal38 Member Posts: 7
    Options

    Alice, yes, I know that it sounds bizarre... I 've read it and indeed I have the same feeling. If I indeed don' t have breast cancer, the next doctor that I 'll need to visit is a psychiatrist. Not a psychologist. I' m aware of that. The way I feel is awful! I 've never been like this... I didn' t have any health anxiety issues in the past, I was a very active person, happy etc. Since this thing started I feel like a wreck. Constantly tired, constantly having bad mood and thoughts, feeling ill, feeling scared. I can't enjoy anything anymore, I try to distract myself, but after a while, it strikes me like a strong wind, I can't do anything to stop it...

    And yes Bessie, you 're absolutely right.. Probably I' ll think that it must have missed the cancer. So I was thinking to tell the doctor to excise the whole area. As for the deformity that will be caused (as my breast is small an the area is in the outer quadrant) , I don't know, I 'll ask him what choices do I have. Yes, I know it sounds totally paranoid. Please don' t get mad with me,I know that I sound like a crazy person but that is how I feel right now...


  • salamandra
    salamandra Member Posts: 736
    Options

    I'm sure you can find a plastic surgeon who will take your private payment to cut up your breast in any way you like (I'm not sure how ethical of a surgeon that would be, but I'm sure you can find one).

    But before you go cutting up your body, why not find a psychiatrist to speak with FIRST? Since you are seriously considering self-mutilation, I think this is a legitimate emergency. Hopefully your GP can find you a psychiatrist who can meet with you ASAP, or recommend you go to the ER. At the very least, they may be able to help you with the immediate symptoms of the anxiety and sleep, which would in itself have a virtuous cycle effect.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    Options

    Crystal, no one is mad at you. We are trying to understand you and trying to help you.

    Given your answer to my question - which is that even a negative biopsy won't be enough to satisfy you if the pain and thickening remain (which it will) - then I second what Salamandra said. Before you see yet another breast specialist, you need to get help for your anxiety.

    You've already had so much imaging and had so many specialists look at your imaging - more than anyone I can think of over such a short period of time. The one mass that was seen on imaging has shrunk and completely disappeared - cancer does not do that. The rest of your symptoms, as you describe them, are fully consistent with having fibrocystic breasts. There is no reason to continue to be panicked that you have breast cancer. The issue you have is mental, and that is what you need to address.



  • clarebarez
    clarebarez Member Posts: 16
    Options

    Crystal, hey sis, Im a flat chested too.

    Maybe thats why we feel so much is because its small? My right breast has increased pain today on the upper quadrant near d armpit. I keep massaging it but I dont feel any lump. Just thickness. Its been 5 months and the pain is still here. I also hate my breast for being like this. >,

  • alicebastable
    alicebastable Member Posts: 1,945
    Options

    Crystal, what if the body part that is bothering you was somewhere else? If your leg was sore, would you say, "Oh, I think I'll just get it cut off"? Good grief, what if you get a headache, would you demand a decapitation? You have a cough, which lung do you want removed? That stomach ache won't bother you again if you have the whole thing taken out.

    Now do you see how it sounds? Listen to Salamanders and Beesie.

  • SKWUT04
    SKWUT04 Member Posts: 14
    Options

    I too want to encourage you to seek a psychiatrist. It won't make your health anxiety/general anxiety go away overnight, but it WILL help. I see a therapist to help with mine and he has helped me in SPADES. Health anxiety is an OCD-like cycle. Let me guess: you have periods where you believe everything is okay. Then a stray thought passes about "what if..." so you go to Google and continue researching or you pull up your records and read them all or you make another appointment with another doctor and have another scan. You come out of the spiral, have a good day, and it starts all over again.

    Sound familiar?

    I can understand what you're going through. I had a 3D/2D mammogram and an ultrasound a couple of weeks ago that confirmed my boob issues were no more than an "island of dense tissue." I will confess that I've had a couple of 15 minute spurts where I think "maybe they missed something because these TWO people on the internet said a mammo and US missed theirs..." But everything I read pre-scan and my conversation with the doctor told me this: Two methods of imagery that are both in agreement are a pretty damned good indicator that all is well. You've had far more than two.

    My doctors went to med school. I did not. I'm an MFA candidate in writing and producing for television, not a medical professional. I need to stay in my lane. Google doesn't give degrees.

    Do I still have pain in the offending area? Yes. Do I still feel what feels like a massive lump? Yes. But it's near my period and the whole area is all kinds of lumpy/bumpy right now as my period is 2 days away. It is what it is and I have to believe my mammo and US.

    Truly, seek help. It will change your life, I promise, from one anxiety sufferer to another.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    Options

    "So I was thinking to tell the doctor to excise the whole area. As for the deformity that will be caused (as my breast is small an the area is in the outer quadrant) , I don't know, I 'll ask him what choices do I have."

    Crystal38, you can "tell the doctor" to do all manner of bizarre things that you might imagine would help your anxiety, but I can guarantee she or he won't come anywhere near your breast with a knife without a good medical reason. For a physician to agree to carve up a healthy breast because its owner is suffering health anxiety would be criminal. Any plastic surgeon--even a sleazy one!--would back away from permanently and unnecessarily maiming a young women who demands it because of mental health issues. Please take this line of thinking off the table. It's not rational.

    The choices you have, it seems to me, involve seeking mental health help. Stay off Dr. Google. Stop digging through all the threads and stories and posts here to find a legitimate reason to support theories you've already convinced yourself are true. As demonstrated by your nightmares, you're spun up to the mental breaking point, and your stress is exploding through nightmares. Find a good therapist and be kind to yourself.