Met the oncologist 4 the 1st x today very frustrated

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ElleRusin69
ElleRusin69 Member Posts: 50

Ok granted I am not diagnosed with bc thankfully but I did have some questions regarding a treatment plan . My PCP referred me for that specific reason. I had a lumpectomy in Jan due to BND and chronic pain in my L breast and up in to my shoulder. Surgeon took a large amount of suspicious looking tissue out - path report dx ADH. Was told that due to my hx of being on HRT for 16 yrs, having very large dense breasts mammo & u/s haven't been useful diagnostically and being a DES daughter, my PCP advised me a consult with an oncologist would be the next logical step.

And I wanted to know whether any bloodwork specifically the blood test that can determine if your able to suppress tumors etc . She had t had a chance to review any of my medical records so she asked me to tell her why I was there to see her etc. when I asked her given my hx if a MRI would be warranted and she's said no yearly mammos and ultrasounds would be able to find anything suspicious - this is 10 seconds after I told her they failed to pick up a 10 cm x 4.5 cm x 2 cm mass of In my surgeons words "junk" When I explained to her that I needed a treatment plan in re the path report that dx said mass as ADH with none present at any margins, she said no you don't have ADH im it seeing that stated anywhere on here I had to tell her its the second line under diagnosis she looked at it again and said "Oh okay I missed that"' and she's skimming thru my surgical report and post op notes she asks me why I "enjoy going to the ER so frequently cause it says here you went 3 times over the course of ten days just because you had some bruising and one of those times was by ambulance just 5 hrs after you were discharged from the surgery center" well I told her I woke up from surgery in the most extreme pain I've ever had and pleaded with them to let me stay overnight because in 90 minutes 6 doses of hydromorphone was given to me thru my IV and I was still crying I was afraid to be sent home in that much pain. If IV pain meds aren't giving me any relief how was I to expect pain pills at home were going to help?? And I didn't just have some swelling and brushing I had a massive hematoma that was getting worse by the day I was running a fever and couldn't sleep my pain was so intense and I luckily I had taken a photo of it ( originally to send to my surgeon cause it was after hrs and I knew it wasn't normal but he refused to let me send it cause he was sure it wasn't any thing he hasn't seen before) so I pull it up on my phone and she immediately apologize that no that would be alarming and it must have been extremely painful (yeah I know smh)

Then I'm trying to ask her what she think my risk factor is and what I can do to lessen my chances etc and she tells me well since you had it removed "its obvious your risk factor of getting breast cancer is practically non exsistent "

Then she starts asking me all these personal questions about my life and how they relate to the whole reason I wanted a consultation with her I will never know. " how do you cope with your sons illness, who all lives with you, where does your daughter to to school, is my son able to work, do you ever get respite care for him, did you graduate high school, did you go to college, what's your degree in, did you ever work in that field, why not, do you have any family in town. are you in a romantic relationship, what's a normal day like for you, do you have any close friends that you could turn to if you were to ever develop bc, is that all your real hair, do you want to have any more children, where did you get that Coach bag it must have been a fortune how could you afford that and qualify for Medicaid, why do you take Ativan and how long have you been on it ?????????????

I can't you how upset I am that she didn't answer any of my questions, a huge waste of my time and I can only guess as to why she was so dismissive. Maybe I shouldn't have listed my sons disability and mental illness on the intake form. I don't know where she was going with all that, was she trying to determine if I had some type of disorder that caused me to have a rough recovery from the lumpectomy?? I did everything they suggested I never was rude or demanding or thought I knew better than anyone else, Its not my fault I couldn't get my reg bra or the extra sports bra I brought to wear after home from the surgical center, I asked to be ace bandaged, my daughter asked if they could ace bandage me to prevent swelling and support , they refused both times, no one warned me if I didn't compress the surgical site it would swell up and cause serious problems that would take weeks to resolve and its not my fault I had to have ER surgery 10 days after to evacuate the area or that I got a staph infection . But that's how I honesy felt when I left her office with none of my questions answered. Like I had caused all my post op complications and was over reacting about my path report. So there's my rant I'm just so upset and I'm no further ahead in understanding what I can do if anything to prevent myself from someday developing bc. ( Oh and the Coach bag I got at Goodwill in Boulder for $15, while my son was an inpatient at the hospital across the street) now I feel guilty for having one nice thing that's how much she frazzled my nerves



Comments

  • peanutsgal
    peanutsgal Member Posts: 161
    edited February 2013

    ElleRusin69,

    I'm sorry you were treated that way in both the surgery center and by the oncologist. NO ONE EVER deserves to be treated that way. It sounds like you have your plate full and didn't need this on top of all of that. As you probably know, ADH does increase your risk some say as much as 4 to 5x that of a normal woman. It sounds like you may have other risk factors as well. Is there any way you can get a second opinion? Maybe even from the breast surgeon that referred you. Sometimes people with ADH are offered tamoxifen for prevention (I was diagnosed with ALH but could not take it due to a history of blood clots) Were you put on any high risk surveillance? Don't stop looking for answers! YOU are your own best advocate.

  • ElleRusin69
    ElleRusin69 Member Posts: 50
    edited February 2013

    Thanks hun

    Nope nothing was suggested all she basically said was its been removed I'm sure he got it all . Remember to do your yearly diagnostic mammo & u/s. I'm like WTF did you mot understand? The only reason I saw the surgeon was b/cause the night before the mammo I started bleeding out of that side told the rad tech they took extra pis and I very lengthy u/s radiologist came in and said everything looks great but if the bleeding doesn't stop see a surgeon ASAP . Had I never bled I never would have seen the surgeon so its not like they can just keep going in there looking for trouble She totally put all her faith in mammos and u/s next yr as what I should do from here on out. I was expecting what I've read here and everywhere else that I'd be closely followed and perhaps an MRI. She acted like I was asking for some radical voodoo or the like. No I won't stop the University hospital in Denver is an hr away they are one of the 61 places listed by some accredited cancer organization as having an high level clinic and treatment facility. I found the link on another board I shouldn't have even wasted my time today I'm about ready to voluntarily have them removed its too stressful with 3 kids by myself and my oldest isnt well I need to be realistic I'm 45 as long as I'm healthy and my kids are healthy nothing else really matters. Thanks so much ((( hugs )))

  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Every single time a doc has tried to tell me that it is all in my head, it has turned out to be a real problem in the end. 

    I very much doubt you are nuts, and it is reasonable to want to know how you can decrease your chances of developing BC in future. The onc was an ass. If you can find a different onc to consult, do it. Alternatively, try to find a gyno who also knows about BC and the management of cancer patients (I say this because I just found such a creature).

    From what I know, you should stop the HR if you haven't already. You should eat a healthy diet high in fruits and veggies, low on white carbs, sugar and pre-fab crap. You should exercise. If it is just walking, that is fine, but try to be physically active for 2X30 minutes a day minimum. 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2013

    elle - I am sorry that you were not treated well by the oncologist - her list of questions was inappropriate and insulting, and a bit bizarre.  I think that unfortunately normal screening (mammo and US) could be the only tools available for you at this point with a diagnosis of ADH that was removed.  Insurance might not pay for an MRI unless ordered by a surgeon for a specific problem, as opposed to being used for screening and some insurance will not pay for ongoing MRI for post treatment screening even once you have had a BC diagnosis.  As far as prophylactic BMX, same deal - insurance may not cover this unless there is a specifically diagnosed problem, and it may need to be a BC diagnosis, rather than a "high risk" situation.  Insurance sometimes regards a non-BC breast as a "healthy breast" in general, so they sometimes will not authorize the surgery/reconstruction costs.  They may not pay for a prophylactic bi-lateral even if you have been diagnosed with BC in one breast, and finding a doc that will do a completely prophy BMX can sometimes be difficult.  If a BMX is truly what you want be aware that it is a surgery that is not without risks, and reconstruction often does not go smoothly - everyone who chooses this  needs to be aware of the potential complications which include multiple surgeries, loss of reconstruction or delay due to infection or skin healing issues.  I am not trying to dissuade you, I just want you to be aware that sometimes you are trading one problem for another one.  Wishing you the best.

  • peanutsgal
    peanutsgal Member Posts: 161
    edited February 2013

    My BS informed me that although the ALH was removed on excisional biopsy, there were probably many more areas of ALH in both breasts. Fast forward to two years later and three biopsies (all showing ALH) insurance not only paid for yearly MRI's, but just recently covered my prophylactic mastectomies. Granted, I had more than just the ALH, I had a significant family history of pre-menopausal breast cancer. But it is possible to have high risk surveillance if you have a BS that will go to bat for you. Mine did and I was never denied any treatments he deemed necessary. Sometimes it is cheaper for the insurance companies to cover the cost of PBMX than to pay out for repeated biopsies and costly diagnostics. It is an extremely personal decision and as SpecialK said not without risks. If you are leaning towards the PBMX, check out the thread titled PBMX for ADH/ ALH. (Or something like that)

  • ElleRusin69
    ElleRusin69 Member Posts: 50
    edited February 2013

    Thank you all so much!! I talked to my PCP who is going to refer my to a good ob/gyn whose also known to be proactive with her patients who've had breast issues. Also because my mother took DES there is a special type of pap I'm suppose to be having every year that my PCP whose a resident (2nd yr student) doesn't have the experience and would feel I'd get better care with this new ob/gyn so that's next week. So at least they're trying to get this resolved my surgeon who was just a general surgeon isn't willing to write an order for a MRI of my breasts he said I'm just being paranoid and he's sure "I have nothing to worry about because he removed it all" so I want to ask if hell put that in writing so if I don't get to convince the ob/gyn that i would really like to have a MRI. I have made an appt in Denver at the University hospital as a backup they have a high risk clinic and take Medicaid I thank you all for your advice and taking the x to share your thoughts For some reason I just am feeling like I have to get a MRI done soon maybe its just me being anxious or the fact that my son is stable and I don't know how long that will last so I just want to get something's taken care of and have a plan in place. I need to make sure I'm taking care of myself so I can be there for him.

    Thanks again you ladies are amazing !!!! Love & prayers to everyone for good health & happiness have a lovely evening 😊

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