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Bad Patient--or just a woman who wants a diagnosis?

Ladies, I have been reading posts from so many brave, smart, funny, and caring women out here all summer, but haven't posted myself. Maybe I am afraid to make it real. But here goes...

Completed surgery, chemo, and radiation for ILC in 2010 at age 55. Quit Armidex after 4 months because of unbearable side effects. Onc told me if I wouldn't take Arimidex, there was nothing she could do for me, so good luck and see ya! Fine. I moved on, and never really looked back. 

Have been happily in denial about the risk of recurrence, until getting in the shower in April when a stream of water hit the nipple of my BC breast in such a way that it was like an electrical shock. Then looked down to notice that the nipple was listing to one side. Mentioned it at my intake appointment in June for a new gp (we had moved) and the NP glanced at it and said, well you are due for a mammo (I have no confidence in mammos for me since my lobular was invisible) and I think your insurance will pay for a screening MRI. So I figured that was a reasonable move.

Weeks go by, then I get the mammo, nothing. Get the MRI, nothing but a vague "thickening" in the area of my scar. By then there is a large dent between the nipple and the scar. My GP thinks it's reasonable to look into this, so they send me to a breast surgeon at a nearby university center where I had the imaging. BS says it all looks fine to her, and writes in my record that she believes it is nothing and I am very anxious. I decide to get a second opinion, and lo and behold the second BS at a different center walks in and says she is BFF's with the first BS (small world here in central Virginia!), and says she agrees with the her best friend (except she did nothing except read her BFF's report!).

Jeez, so my GP sends me somewhere else for an ultrasound. Kind, lovely tech but radiologist herself does not listen. When tech finds the scar tissue on the US it looks ominous so radiologist bursts back in the room to take over and biopsies that area, completely ignoring the other areas and never ultrasounds my nipple. Biopsy comes back benign--scar tissue! Completely expected and answers nothing about nipple which is now painful and retracted, and the skin retraction next to the nipple which is increasing seemingly daily. Continue adding symptoms--subtle but never the less... Clear, spontaneous discharge. Breast pain. Tender axillary lymph nodes on both sides. 

(Internal Ranting: If these symptoms are all psychosomatic, my brain is doing an excellent job coming up with appropriate symptoms. And, HELLO, I had breast cancer. I had lobular. I have a 20% chance of a recurrence. It's not like I am making this up for fun! I was SO happy in denial, and would LOVE to go back there! It is REASONABLE to pursue this, right?)

GP sends me to a dermatologist in another town to maybe do a punch biopsy of the nipple. She doesn't particularly listen (don't they teach listening skills in med school?) but she is sympathetic and concerned about what she sees. She is afraid she will miss something so has her office call the BS she likes best and tries to get me in to see him that day. Can't but see him the next week. He is incredibly kind and listens. He is doing a biopsy on two areas tomorrow. Hoping for an actual diagnosis in a few days. Maybe duct ectasia? Papilloma? (Some real but benign condition that explains everything would be excellent!)

Thanks for listening! Best wishes to all of you out there.



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Comments

  • Egads007
    Egads007 Member Posts: 474
    edited October 2018

    Kassey - and I thought my recall for a diagnostic mammo earlier this year was bad...your story makes me ashamed of the hand wringing I did back then. Im hoping that posting and making it real is a wee bit of comfort for you. Here for you in spirit and sending virtual hugs while crossing fingers and toes that you get a definite answer....and clear results! Post when it gets too real, if it helps. Let us know how the biopsy goesplease.

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    A recall would be totally stressful! It's all crazy-stressful isn't it? Thanks for responding so quickly. It made me cry--in a good way--to hear from you. All the best.

  • hapa
    hapa Member Posts: 613
    edited October 2018

    Well I'm not a doctor, but I think you deserve an answer as to what is causing the abnormalities. Good luck with the biopsy and I hope for a benign outcome!

  • Egads007
    Egads007 Member Posts: 474
    edited October 2018

    Waiting and wondering is about as pleasant as being skinned and rolled in salt...pure torture! You’re going through the ‘extended version’, so not fair! Keep as busy as possible, and be really kind to yourself....pedi/mani, massage type of kind. Ice cream is good for temporary relief, maybe a ‘refreshment’ if you partake. Anything to make the time easier!

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Great advice! Actually have pedicure scheduled for this AM before procedure and thought I was being silly, but now will consider it therapeutic. Thanks

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Biopsy went well, doctor punch biopsied the two areas I am most concerned about—for which I am grateful! Said it looked like scar tissue, but to come in in a week to take out the stitches and go over the results which will be in by then.

    I will post right after.

    Meanwhile, anyone else out there having trouble getting a diagnosis

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Biopsy went well, doctor punch biopsied the two areas I am most concerned about—for which I am grateful! (Being listened to is huge!) Said it looked like scar tissue, but to come in in a week to take out the stitches and go over the results. Feel less stressed now that I have pushed and gotten what will hopefully lead to an official diagnosis—or at least a reasonable explanation!

    Will post results next week. It is wonderful to be able to reach out to women for supporthere.

    Meanwhile, anybody else struggling to get a diagnosis?


  • Egads007
    Egads007 Member Posts: 474
    edited October 2018

    Kassy, So happy to read that you’re finally getting somewhere with all the unanswered questions....and that the results may be scar tissue. Yay you! You did a great job of self advocacy,proving that none of us should let ourselves be passed over. I’ll be watching for an update on your official results and sending more positives for a b9 finding!

    Sorry, can’t help with diagnosis struggles, I had no problems with that. Getting treatment was another story...waaaay too long. I basically had to slam my fist down on the BS’s desk and holler “when do you intend on doing something about my confirmed malignancy?!?!?” Lol, that made them move things along quickly.

    Supportive hugs!!

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Egads, Oh my!!! It must have felt awful to have that survival-based sense of urgency after your dx and not have the doctors respond accordingly! I hope it was because your BC was slow moving, but good job getting their attention!

  • WC3
    WC3 Member Posts: 658
    edited October 2018

    I think you are doing the right thing. You are the one who has to live with it, you are within your right to have your concerns addressed to your satisfaction.

    Here is a story...

    My mother had shingles once. She started experiencing pain in her eye and my sister drove her to the ER. The attending physician insisted the shingles were not in her eye. My mother was not pleased with him or his bedside manner and was in such agony that she allowed my sister to drive her to the hospital in the next town, where she told the attending physician that she just came from x hospital and the attending there was a real jerk, to which replied he "You mean my brother?" Needless to say things did not go well and he concurred with his brother that she did not have shingles in her eye.

    A few days later, she was able to get in to see an ophthalmologist. Yes, she did indeed have shingles in her eye.

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    That is a great story! His brother! Too funny, thank you for a great laugh. Your mom was wonderful

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Received a return phone call with preliminary results of punch biopsies: skin thickening and inflammation but negative for malignancy.

    I know I should be grateful and relieved, but I still feel really apprehensive. I started seeing a therapist just in case it turns out to be more about anxiety than a recurrence, but... Why is the skin thickened? What is the inflammation about? Why my other symptoms and why did I find a new lump/or/swollen lymph node along the inner edge of my breast along the breastbone TODAY?

    I will have a chance to ask him when they take my stitches out Tuesday. Maybe they can check out my lymph nodes then?

    My therapist says that those who have had BC often suffer from a mild type of ptsd, so maybe I am just triggered. But on the other hand, when I found my lobular the first time I just knew immediately—and when I got checked out it was invisible on the mammogram and barely detectable on the US even with me pointing to it. So there is something to intuition or gut feeling—and Ijust feel like something is wrong...


  • KBeee
    KBeee Member Posts: 695
    edited October 2018

    Because of the recent biopsy, things will be swollen for a while, so perhaps you could request a repeat imaging in 2-3 months, or sooner if conditions worsen. I would definitely want answers to the nipple discharge, etc. Perhaps you could also consider an internal medicine doc to make sure nipple discharge and such are not pituitary related. (Trying to think outside the box)

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Thank you, good advice. In 3 months it will have been 6 months since screening mri, so that seems like a reasonable follow up. Thank you all for being there.

    Wishing everyone well

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Hmmm... As a Good friend said, Thou hast opened a can of worms!

    I had a “wellness” CT scan at a hospital where you can self-refer and self-pay. I was hoping for clarifications of my breast and axillary lymph node concerns. Turns out, according to the radiologist, that this type of scan isn’t great for that. But it did find a 6cm cyst (size of a tennis ball—yuck!) on my ovary (and I am years past menopause!), a 5mm nodule in my lung, some calcifications in my “other” breast, and two broken but “healed or healing” ribs under the treated breast. Recommendations to follow up on lung nodulein 6 months, and calcifications and ovarian cyst right away.

    I want to be evaluated at a cancer center where they will look at the whole picture. Do you think they will see me without already having a recurrence diagnosis?

    Any thoughts appreciated!

  • monarch777
    monarch777 Member Posts: 338
    edited October 2018

    Kassy, do you have an oncologist that you see at some regular interval

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    No, I haven’t seen an oncologist since a few months after chemo & radiation when I quit Arimidex, in 2010. Basically she said there was nothing she could do for me if I wasn’t going to take the Arimidex and to come back if something hurt

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Jo, thanks for reaching out to me. I just saw that you have had a recurrence and I am so sorry you have to go through this again. In some ways I have been so focused on getting ANY diagnosis that I have blocked out what the reality of getting a diagnosis—if it is positive for recurrence—would really be. Take care.

  • KBeee
    KBeee Member Posts: 695
    edited October 2018

    Kassy, I would contact a major medical center, or a university based medical center and get them all of your records. They should be able to set you up with the appropriate care team to evaluate everything. Keep us posted.

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    KBee, sent the report to my GP, who is a very nice, 50-ish laid back small-town doctor, and he went thru it and said

    -Lung nodule, probably nothing

    -Calcifications, probably old

    -Thyroid nodules, ok I guess we should ultra sound but I am sure it’s nothing

    -Broken ribs, well do they hurt? No? (The I asked are you 100% sure this isn’t a bone metastasis...) No, nothing is 100% so if you really want us to we could do a bone scan but I think it’s just really some old breaks

    -Ovarian cyst, well cysts are weird, probably nothing, but we can schedule a vaginal ultrasound and take a look at it.

    He was resigned but not thrilled to see I had even gotten the “Wellness” scan, and sees no reason to see an oncologist...


  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    KBee, sent the report to my GP, who is a very nice, 50-ish laid back small-town doctor, and he went thru it and said

    -Lung nodule, probably nothing

    -Calcifications, probably old

    -Thyroid nodules, ok I guess we should ultra sound but I am sure it's nothing

    -Broken ribs, well do they hurt? No? (The I asked are you 100% sure this isn't a bone metastasis...) No, nothing is 100% so if you really want us to we could do a bone scan but I think it's just really some old breaks

    -Ovarian cyst, well cysts are weird, probably nothing, but we can schedule a vaginal ultrasound and take a look at it.

    He was resigned but not thrilled to see I had even gotten the “Wellness" scan, and sees no reason to see an oncologist...


  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    So do I keep pushing or just wait “until something—other than my breast, nipple and armpits—hurts” like I have been told? UVA is only a couple hours away, is a top cancer center, and one of my daughters lives there, but I don’t know if they will even see me... $&@%!

  • wallycat
    wallycat Member Posts: 1,185
    edited October 2018

    I'm in agreement with the doc you just saw....I'd have the ovarian cyst examined because it is rare (though not uncommon) to have post meno gals have cysts. I also can't imagine that a tennis ball in your pelvic cavity won't cause pain or bladder pressure or organ manipulation even if it is b-9. You could find an oncological gyn and discuss it with her. As an aside, you could mention the other issues. Thyroid cancer "could" happen, especially in women who have breast cancer, so that is worth verifying.

    Do you recall a time you could have broken a rib? Do you continue to have breast exams for the breast they found calcifications in? If yes, then I would put that on the back burner.

    Nothing is 100% and the day you discover you are perfectly healthy, there's a new day to dispel the satisfaction. We do the best we can and hope we make it to old age in no pain and our wits about us. It is smart to investigate things that are at issue; not necessarily to ID everything and all at once.

    Best to you!


  • Georgia1
    Georgia1 Member Posts: 188
    edited October 2018

    Kassy, UVA does indeed have an excellent breast center, and it really does feel like you should have an oncologist seeing you annually even if you're not on an AI. So if I were you I'd ask your GP for a referral to an MO, and go to UVA even if you have to randomly pick someone there to see. It all sounds "ok" but regular check-ups with someone experienced in breast cancer would be helpful if only for your peace of mind. Best wishes.

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Thank you Wallycat. I think that’s a reasonable, middle way to approach it: seeing an oncological gynecologist specifically about the ovarian cyst. I worry that a local general gynecologist wouldn’t think to do a ca125 serum test, for example,, and I can mention my breast concerns to her as well and probably not be blown off. For some reason I am not concerned about the thyroid—I guess because it wouldn’t be a metastasis. The broken ribs thing is strange—I can’t think of any time I would of broken them but who knows. If they are old breaks I don’t care, but if they are still “healing” I remain a little concerned.

    Thank you for your advice

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Thank you Georgia, that’s perfect—a combination of your and Wallycat’s advice—gynelogical oncologist at UVA!

    Thank you both. Every time I get frustrated because no one is listening, someone will respond here, and it makes all the difference

  • Astrid
    Astrid Member Posts: 1,033
    edited October 2018

    Hi kassy

    So sorry to read about your ongoing issues and search.

    Not being heard is a terrible thing. Not being taken seriously with your concerns...not listened to or patronised. I hope you can take comfort on being listened to with care and concern here. I like that you continue to push for finding answers. Intuition can be a powerful detection tool. Yes, sometimes it might be anxiety confusing clarity or it might be that symptoms are as a result of your search..soreness, swelling and glands post biopsy punch eg. Although some of that was before the punch...

    Ribs...I wonder if surgery is connected? Stil healing so recent? U/sound for cyst is good.

    Oh...I could not take arimedex either...unbearable s/e. My MO said to try aromasin as works differently and it does. No aches but I got awful depression. Went on anti D's and then took aromasin for a year. It's all weighing things up...

    Let us know how it all goes.

    .

  • Kassy54
    Kassy54 Member Posts: 47
    edited October 2018

    Astrid, Ladies, I am deeply grateful for your having responded. It means so much to me. Every time I started to feel alone and at a dead end, one of you have reached out. I wish I had known about this community back in 2009 when I was diagnosed, but grateful to have this connection now!

    Based on all your brilliant suggestions, I have emailed my GP and requested a referral to UVA’s Gynecologic Oncology department for evaluation of the 5.7cm (yuck) ovarian cyst. At that size (>5cm) it should be removed regardless so I don’t have to worry that it’s just an artifact of my anxiety, and as you all suggested, I can ask about my other concerns while I am there. And best practices say they should do a C125 blood test for it, which could reassure me on other types of recurrence

    My GP may be relieved to hand me off!

    Thanks, all. I will update soon. Please take care!

  • Astrid
    Astrid Member Posts: 1,033
    edited October 2018

    well done Kassy. Best of luck with cyst related stuff and keep us in the loop.

  • KBeee
    KBeee Member Posts: 695
    edited October 2018

    Glad you are seeking care at UVA. Hoping they can get to the bottom of it quickly.