What is NORMAL Screening after Breast cancer, mastectomies, reconstruction without chemo or radiatio

Lludwig
Lludwig Member Posts: 5
edited March 2014 in Breast Cancer #1
I realize everyone is different with specific types of cancer, diagnosis and treatment, I will try and outline my journey. My concerns are feeling confident with my care and treatment in the past year.

I was diagnosed with invasive ductal carcinoma in July of 07. I had a bi-lateral mastectomy, reconstruction with silicone implants. I have family history of maternal aunt, mother with breast cancer with reoccurences. I also have had 3 of 4 siblings with some type of cancer. I can no longer of course have mamograms, would be no reason. I have not received any chemo or radiation. My oncologist assured me if something developed under these implants, he would notice it, I simply don't know how he would do that. On my last visit with him in Sept 08, there was no blood drawn in advance prior to my visit, and there will none be drawn in 3 months accoring to my schedule. I have never had a cat scan or MRI. I am currently taking Arimidex due to fact that my cancer was estrogen positive. They only removed my sentinel node, it had not spread into lymph nodes.

In the past 5 weeks beginning in Sept, it started with headaches, nausea, ringing in my left ear constantly, burning hot sensation in neck, upper arms and breasts and then the worse-very high blood pressure 230/124 at highest with a visit to emergency room. Main concern is lowering my BP, but other symptoms are not being addressed, oncology office won't return my calls, primary care physician is trying.

Sincerely, I do realize that this is minor to what some of you are having to live with and endure, but if there is anyone out there that have had similar concerns or symptoms, I would sure appreciate any feedback. I have been told that silicone implants need to be checked every 3 years for leakage. Somewhere in the past year I would have thought that an MRI or cat scan would have been done. I am not trying to obsess over this, but I do know that my body is trying to tell me something.

Thank you so much for any help. LLudwig

Comments

  • ohilly
    ohilly Member Posts: 441
    #2
    same concerns
    Lludwig, my story is very similar to yours: I also had invasive intraductal, then bilateral mastectomies, no spread to lymph nodes. I discovered that I am BRCA 1, so I had a preventive mastectomy on the opposite breast even though the cancer was in only one breast.

    Like you, I questioned why there are no MRIs, tests, scans, follow-ups, etc. The only follow-up I am receiving is to see my breast surgeon and oncologist every few months, and they check me by 'palpating' me. They explained to me that they are checking for any local recurrence in this manner. I asked at least four doctors (including my oncologist, who is very well-known at the U of Chicago Medical Center) and they all agreed that no testing or scans are recommended once you have a bilateral mastectomy. I also feel uncomfortable with this, but I guess that is the standard of care. I take Femara, by the way.

    I think it is very hard to live with the fact that the cancer may recur, and there's little we can do other than report symptoms to our doctors and take Arimidex or Femara. But it seems to be the state of medical knowledge at this moment. I check websites (www.breastcancer.org and www.lbbc.org or com, I can't remember which) once a week to see if there are any clinical trials to make myself feel better. I am in a clinical trial at this moment in which I take Zometa, which is supposed to prevent recurrence by making the bone hostile to cancer. If you're interested in this, look on the above websites and there is information.

    Good luck, and let me know if you find out any different information about follow-up. Ohilly
  • Joycelouise
    Joycelouise Member Posts: 482
    #3
    There is absolutely nothing
    There is absolutely nothing minor about your questions...we all have lots of them. I think you need to meet with your onc. until you are comfortable with his information. Direct information, not "trust me" stuff. I will suggest the following...but it is uninformed. The implants go under the muscle, I believe. The most likely location for recurrance after your mas. would be the scar site. I would think that the tissue on your chest most closely aligned with breast tissue would be above the implant and there fore easier to monitor. But, please, check this out with your medical team. I am going to have an implant soon, and I will ask the same questions. If the cancer (God forbid) goes into the bone or muscle, I do not think this would be detectable by a breast squeeze type proceedure, even if you had "real" breasts. But, I offer this just to help you ask questions of someone who is qualified to give good answers.
    Best luck in gaining peace and trust. And, beautiful baby! love, Joyce
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    Cancer.net guidelines....
    http://www.ascocancerfoundation.org/patient/ASCO+Resources/Patient+Guides/ASCO+Patient+Guide:+Follow-Up+Care+for+Breast+Cancer

    Cancer.net is a comprehensive site for all kinds of cancer information.

    I clicked on cancer types, then breast cancer, then follow-ups....there are many pages...

    (I use the followup guidelines for colorectal cancer from this site, it recently caught my oncologist's lack of ordering a CT scan for the year....)

    Hugs, Kathi
  • horsegal
    horsegal Member Posts: 22
    #5
    LLudwig, you're not alone in
    LLudwig, you're not alone in your concerns over feeling confident with your care and treatment. I think we probably all feel this to some degree at one point or another.
    My sister had the same type of aggressive cancer as me, but we received different scans and treatments. I was diagnosed Jan '07 with stage III invasive ductal carcinoma with lymph node involvement. I don't really know what the 'norm' is, but I had a bone scan, CT scan and MUGA scan(to show the health of my heart). I immediately started chemo, followed by a double mastectomy, more chemo and radiation. When I was done with treatment, I asked about having follow up scans. I was told that because of my treatment, follow up scans usually were not ordered. They were usually done to see if the chemo was shrinking the tumor, and since the lump in my nodes was no longer palpable at the time of my surgery, we knew it was. I accepted this explanation at the time, since it made sense to me, but the worries still creep in. My oncologist didn't feel follow up scans were necessary, but if it eased my mind, she would order them. So I just had a bone scan and CT scan done. I feel more at ease, so was glad I asked about them. My sister had PET scans done before and after, but my insurance wouldn't pay for them unless they found something suspicious on the CT scan, as they are very expensive. She even asked for a brain scan, to make her feel better about her whole body. As for other follow up, they do draw blood every three months at my appointments, and I'm pre-menopausal, so am on tamoxifen.
    Also, I'm having implants put in next month, and they will be under the muscle. I was told I still need to check monthly around my breast area and armpit since they can't possibly remove all the breast tissue - even with a mastectomy.
    Ask your doctor if he'll order a scan for you if you think if would ease your mind. If he refuses or says it's not necessary and you're not comfortable with that answer, get a second opinion. Scans aren't going to keep it from coming back, and several people have told me the anxiety lessens with time, but since you've never had one done, if it will ease your mind to have a scan, I say go for it. Peace of mind is worth something. Oh, and nothing is minor when it comes to your well being. We're all different in how we feel and how we deal! Best wishes, and do what makes you feel good! Fran

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