Almost two years out from last surgery...

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I have posted a couple times about the fact that no one is checking up on me. I had extensive DCIS grade 1 er/pr+, and lots of ADH in the ducts and had a double mastectomy. No one has checked my chest in over a year now. Edited to add since people don't see my line at the bottom that I didn't have reconstruction.

I realize that the probably of me getting breast cancer is pretty much zero, but there is always a chance, even if  slim. No one knows what the beast has planned, right?

So my breast surgeon left the area almost a year ago. She left a not in my chart that she wanted to see me in August 2011. No one told me this information! I do remember her saying that my primary dr. could monitor me.

Well, my primary doesn't want to monitor me. I called the oncologist I had a consult with and he said that since I don't need any onocolgy services, he won't see me.

I called my primary clinic and they have no female surgeons anymore. I usually don't care who I see, male or female, but for some reason, I wanted a woman for breast cancer.

So, the other clinic organization in town, has a female breast surgeon. I explained my situation and the lady said she talked with the surgeon. Surgeon really doesn't want to see me because I don't need any surgery, but will see  me to discuss things. My gut says this won't go well. She already doesn't want to see me. Well, why bother with one appt. if it isn't going anywhere. It is a waste of my time and money.

Over the last couple days, I have really been down. It's like I have my tail between my legs like I am begging for someone to look out for me once a year. I don't think I need anymore than that. But what do I know, I am not a cancer dr.

Once again, the medical community is making me feel rotten. I don't think it is unreasonable for ONE DR. to see me ONCE  a year to check up on me, do you?

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    I'm sorry you feel medically neglected.  

    I still see my oncologist every 6 months because I'm on Tamoxifen (and had IDC).  But honestly, all he does is feel my breasts, abdomen, and neck (lymph nodes).  My GP does that at my yearly.  I still see my breast surgeon bi-yearly but I'm thinking that will end soon.  She does the exact same physical exam as the MO and GP. 

    Do you have a yearly physical?  I don't think the MO's or Surgeons would be doing much more for you than a GP.  :)

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited November 2012

    I too would want someone to check on me, maybe you need to open your mind to a male doc?

    I do not know where you live but since it is only a yearly visit, maybe driving a bit more will find you someone to be comfortable with

    yeah, I am 4 years out from DCIS, lumpies, rads and aromasin but I do still get mamos and last year had a biopsy on new junk so yeah, I would want a continual followup

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited November 2012

    With your medical history, you should be able to register in a breast screening programme that will allow you access to a yearly mammogram.  It's my understanding that a family doctor can make the referral for you.  Perhaps the surgeon you will be consulting can provide the referral and get you started?

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    I thought about seeing a male, yes. But I fear the male surgeons at my base clinic will say the same thing...the don't need to see me because I don't need surgery.

    Selena, mammograms make no sense for me. IF you read my post it states that I had a bilateral mastectomy with NO reconstruction. If I needed mammograms, my family dr. would surely do that for me. I don't know about anyone else, but I don't need to put what little flesh I have left on my chest in a mammogram. The remaining tissue doesn't even amount to an A cup size.

    I have yearly physicals, but she will not be responsible for monitoring my post cancer treatment, so she will not be doing that for me.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    Well, so far two people have not read my post thoroughly. If you are going to respond, please make sure you read the whole thing.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    What exactly are you hoping for as follow up?  Blood tests? MRI?

    And I did read that your "primary doesn't want to monitor you".  I was just trying to say that there isn't much your primary would do differently for you (in your situation) than an onc or breast surgeon.  

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited November 2012

    Cinnamon -- this is deplorable.  Seriously.  Why doesn't your primary want to follow you?  Is it because he doesn't feel qualified?  If so, then he should be able to give you a referral.  Current practice guidelines National Comprehensive Center Network (NCCN) says that you should have a physical exam and history taken every year.  Some physicians will also ask for a MRI (though this is not standard treatment).  

    I think what has happened is you have "fallen through the cracks" due to your surgeon leaving.  You need to find a breast surgeon, or a womens health practioner (nurse practioners who specialize in womens health are usually quite excellent) who will provide you with a yearly exam and history as follow-up.  Even though you are at low risk (1-2%) of recurrence,  you are correct, it is no zero, and you are still higher-than-average.

    Good luck to you.  

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited November 2012

    Cinnamon-I also had a BMX-no recon. My BS see's me every 6 months. It was supposed to go to yearly but since my MO has turned me over to the PA, she told me she would see me every 6 months for the 1st 3years. My PCP & the PA(@ MOs office) seem afraid of my chest, so visits with them aren't really helpful. I hope my BS doesn't retire anytime soon or I'll be in the same situation you are.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited November 2012

    I asked for a referral to a Breast Clinic from my GP as I wanted someone with experience and knowledge in breast cancer monitoring me.  I had tried for months to get to the same breast clinic without the referral and kept hitting walls.   Have you asked your GP for a referral??  It just might open doors for you...

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  • nwest125
    nwest125 Member Posts: 240
    edited November 2012

    I had thought I was finished with my BS after my follow up in 2010 but my GYN told me no I need to see a BS at least once a year. Don't no why but she told me to space it out with my PC, ONC and her so that way I am checked every 3 months.

    Nancy

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  • lago
    lago Member Posts: 17,186
    edited November 2012

    Many people do not see their BS but are being monitored by their onc. Since you did't have an onc I would think your gynecologist would be monitoring you… like others have said "feel you up" once a year.

    1st year I was checked every 3 months. Years 2-5 the plan is 2X a year. After that once a year till 10 years. Not sure what happens after 10 years.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2012

    Hi Lago, I don't have a gynelcologist either cuz I had my uterus, ovaries, tubes and cervix removed.  (and I will say that you are really looking good!!! I remember your picutres when I first started out in 2010!!)

    I really appreciate all the encouragement. I am sure something will pan out. I am just stuck in the middle. I have had such a horrible time with different drs. and nurses. My primary told me at the last time I saw her, that I have high standards. No, I don't. I just expect competent, respectful, engaging medical professionals. I wrote her a 12 page letter of all the crap I have gotten from drs and nurses. She actually called me after hours and had no idea about the specifics. It has gotten so bad, that my blood pressure shoots through the roof when I go now, usually ahve to take a 1/2 xanax.

    However, DCIS is much different than higher stages. It is only in the milk ducts, so DCIS post treatment for a BMX and clear margins will not need the extra monitoring that higher stages need.  DCIS is still cancer but a different animal than stage 1 or higher. Thanks.

    I like the idea of seeing a nurse practitioner!!! I will definitely be writing that on my list to see if their is a woman's health practioner in the area. What a mess just to try and get someone to check me out once a year.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2012

    Hi Lago, I had stage 2, grade 1 bc; followed by a lumpectomy and 33 Rads treatments. Currently taking Arimidex. From what I understand from my BS I see him every 6 months. My last visit last week they did a mammogram of both breasts. The next one in 6 months will be for the affected breast only and then back to the routine mammograms of both breasts. I am seeing my ONC tomorrow. I am supposed to see her following my appt with my BS. I know I am supposed to see her at least once a year for I think 5 years but I will verify that tomorrow. My ob-gyn does check my breasts and runs a complete blood profile. I think all my ONc is going to do tomorrow is check to see how the Arimidex is affecting my bones because it tends to do that and examine me too like checking the nodes, etc. She said I am to call her asap if I have any kind of pain other than the joint pain from Arimidex that lasts for a long period of time. Diane

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  • lago
    lago Member Posts: 17,186
    edited November 2012

    cinnamonsmiles I am well aware that DCIS is not invasive but you still have breast tissue (they can't remove it all) and your scars still need to be checked because that is the most likely place for a recurrence. And while you might be considered 95%-98% cured someone needs to be checking on the 5-2% My risk of getting breast cancer with my non family history and excellent health was less than 2% when I got it! While you may not need to be checked every 3, 6 months I don't think every year is out of the question.

    Believe it or not I have not had the best luck with doctors but I found a good team, have a great PCP and fired my old gyno replaced with one recommended by my PCP. There are good ones out there.

    (Granted Aenta, my insurance no longer has any my doctors in network starting 2013 so I found out last week. So I too am a bit freaked out. My husband's company was unaware so they might find another option/insurance plan for their employees).

    Thanks for the compliments. Digital pictures are very flattering. Might have to put up my Strides Walk picture from the 20th

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