Intruducing myself

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MaryToU
MaryToU Member Posts: 28

I am one of your (sadly) many newbies. I was diagnosed on October 6th, I know it is breast cancer awareness month, but I did not think they were giving out free samples. Anyway, I turned 53 this July and this was my first mammogram. I avoid going to doctor's unless I am on my death bed. Easy enough to do when you are in the military health care system. Now my husband is retired, so I decided it was time to get a doctor of my choice and get thing ready for my next stage of life. There is no lump or any other sign, the tumor itself it close to the chest wall. Even my surgeon can not feel it. So after many mammograms, ultrasounds, a core needle biopsy, and finally a PET scan, all within a two week time frame I am ready for the next step.

What I know, the cancer has not spread, and I will have a full mastectomy on the left breast since more than 1/3 of the breast is involved. Beside the main tumor, I have several different calcium deposits in my left breast also. I will also be heading down to Tampa for a second opinion and a genetic testing to see if I should have both breast removed. The right breast right now it totally clear.

For the most part I am very optimistic over the whole situation, with a few bouts of depression here and there. I guess that is to be expected. I guess what is bothering me the most it not having actual time frame for anything. My life is just on hold for the time being. My doctor thinks it will be 3 to 5 weeks before I have surgery. Now just have to wait for the Tampa stuff to happen.

Comments

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited October 2016

    Mary, sorry you found yourself here, but you are in a group of supportive people! You have done so many things right to this point. Keep it up! It does feel like a hurry up and wait scenario at times and that can be frustrating. Once you have a plan in place, you will feel much better about moving forward. These decisions are hard. Your Dr may also order an onco-test to see if you would benefit from a chemo regimen. That may be part of the genetic testing that you mentioned. I'm sure you already know, but, get copies of your medical reports as you go. Best wishes on your treatment and recovery!

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Hi Mary, and welcome to Breastcancer.org! We're sorry you have to be here, but really glad you found us. As you can already see, our wonderful Community is full of helpful and supportive members, always here for you.

    Please continue to post, let us know how you're doing, and ask questions. We're all happy to help!

    --The Mods

  • Positive2strong
    Positive2strong Member Posts: 316
    edited October 2016

    hello,

    I was diagnosed on August 23, I went to Italy and returned Sept 17. I had a lumpectomy on Oct 10 this past Monday. This community helped me immensely. I am not sure of your stage etc, I am no expert.

    Where do you live? I felt blessed that I went to the best surgeon, Dr. Krist Funk. She has many YouTube videos. But please know this is manageable and please ask many questions and try to find pleasurable things to do. The Italy trip helped me immensely. I took my photos to look at while waiting for surgery. My anxiety was so high once I returned from my trip and had to face surgery..

    I had never taken a prescription or had a surgery so I know what you mean about not going to a doctor.

    Thank God you did go now and you have many quardian angels watching over you.

    These women are amazing.

    Try to post what you know in your profile and make it public to the members as that will help to find similar people that have been thru it.

    I have a friend a 20 year survivor and it helped to know she made and there is do much more advances today.

    Thinking of you.

    Positive Linda

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2016

    Just a clarification: OncotypeDX testing and genetic testing are two different things to determine two different courses of action. OncotypeDX assays a sample of your tumor for 17 genes and is an adjunct to the other histological and biochemical features of your tumor—and for IDC that isn't clearly suited or unsuited for chemo, it determines the advisability of prescribing it, based on predictions on how much benefit (distant recurrence, overall survival) chemo would add to hormonal treatment. A “low-risk" (0-17) score indicates the tumor wouldn't be very responsive to chemo and the risks would outweigh the benefits. And it does not take into account type or extent of surgery, as it is almost always done on a bit of the tumor removed during your mastectomy or lumpectomy.

    Genetic testing has nothing whatsoever to do with chemo vs. no chemo. It does not test your tumor. Preceded by a counseling session (required by insurers), it takes a sample of your blood and analyzes it to see if you carry the most dangerous mutations to the BRCA 1 & 2, PALB and Chek2 genes—all of which mutations can dramatically raise your risk of not just breast cancer but also ovarian, colon, pancreatic and melanoma. (Patients with BRCA 1 or 2 mutations have up to a 50% risk of developing breast cancer—and with BRCA 2 mutations, triple-negative is likelier to occur. They are usually counseled to have not just BMX but also oophorectomy, because the chance of ovarian cancer is so high). Mutations are more common in descendants of ethnic groups that historically rarely intermarried, so the mutations were likelier and likelier to be passed down with every generation. (Ashkenazi Jews in particular, because until the 19th century intermarriage was unheard of and we were concentrated in--and restricted to--Eastern Europe's “Pale of Settlement").

    So OncotypeDX is for chemo vs. no chemo. But genetic mutation testing is for determining whether to do prophylactic removal of both breasts and ovaries, as well as more aggressive regular screening for melanoma, pancreatic and colon cancers.

  • MaryToU
    MaryToU Member Posts: 28
    edited October 2016

    Postivestrong, thanks for the advice for making my DX public. I am still learning the site, and I thought it would automatically be posted. My bad. My husband and I are (or were ) going to Germany for two weeks after Thanksgiving. I am hoping we can still make the trip, as I feel totally fine. Now comes the worry of what damage can we cause if we do put everything off for two weeks. The cancer has not spread at all, is there a chance that it could?

  • Beatmon
    Beatmon Member Posts: 1,562
    edited October 2016

    That is a good question for your onco. You will have to get your port first. ...nothing moves fast in the medical community unless you have a trip planned. If it was inflammatory breast cancer, I think they would want to start quickly. The her2 may also move you up faster. There are some really smart ladies that will chime in that can help advise. Best of luck with your treatments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    marytou - I am also a triple positive, and here in Tampa. I was diagnosed at the end of September and did not have surgery until the beginning of November - waited on genetic testing for BRCA status before deciding on surgery type since I am adopted and have no access to family history. Due to your Her2+ status and tumor size I am guessing that neoadjuvent chemo will be offered so that you can receive Perjeta, not sure if waiting to start that until late Nov. would be advised. When do you come to Tampa?

  • JudyGG
    JudyGG Member Posts: 8
    edited October 2016

    Only my second post.  I have read many of the discussions and found them helpful and comforting.  I certainly understand the feeling of your life being on hold!  I was diagnosed with DCIS in my left breast the middle of August, had a lumpectomy, bad margin, MRI, 4 more biopsies and the result was two IDC small spots in my right breast- after much discussion with my BS, decided on DMX then had to find the right plastic surgeon.  Having DMX on 10-26 with reconstruction started immediately (expanders for implants).  What type of reconstruction was a big question for me and hope I made the right decision.  Would suggest you may not make your trip but hope all goes well for you. 

    We are planning a cruise in mid-April 2017 and I can't get a straight answer as to whether or not to keep that plan!  Mainly will depend on if I need chemo and won't know that until about 10 days after the surgery.  All the waiting - and not knowing- makes me nuts.  I can handle about anything but need to KNOW what will or might happen in order to get my head around it.

  • MaryToU
    MaryToU Member Posts: 28
    edited October 2016

    Specialk, I will be heading to Tampa this week, to the Moffitt clinic. Along with other questions for them, I want to see if removing my Ovaries will be a better option than a long spell of hormones. I have read this is a good option for perimenopause woman, but I have been in menopause for a year.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    marytou - even if your ovaries are removed your adrenal glands still produce hormones that convert to estrogen. Most ER+ postmenopausal women take aromatase inhibitors for anti-hormonal therapy for at least five years, just as premenopausal women are prescribed Tamoxifen. The three aromatase inhibitor drugs are Arimidex (anastrazole), Femara (letrozole), and Aromasin (exemestane). I was postmenopausal for nine years prior to diagnosis with breast cancer due to a total abdominal hysterectomy and bi-lat oophorectomy, and I still have to take an AI drug. Here is a link that explains this very well from the BCO main site:

    http://www.breastcancer.org/symptoms/diagnosis/hormone_status/treatment_hrpos

    I hope your visit to Moffitt goes well, it is a big facility - it can be a bit overwhelming. I am right down the street from there if I can be of any assistance.

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