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Mareny109
Mareny109 Member Posts: 34
edited July 2020 in Just Diagnosed

The results of my right breast lump biopsy. DCIS. Since we have Covid 19 there is no surgery they will do for me right now. It's Estrogen and Progesterone positive. She's not sure when she'll be able to do the surgery. She said normally she would send me to the oncologist. So today I tried to apply toMedicaid. I'm currently unemployed due to the Covid. So I guess at least I have all day to sit on wait on the phone. I miss the old days here you could go in someplace and ask to speak to someone about your options. So thank you Covid for being a wet blanket.

The Dr. is starting me on Tamoxifen. I'm going to have to read and read on that one. I get why. I'm mostly afraid of mood swings. And not sleeping. I'm 50 so basically my vaj is a desert anyway. But I took birth control pills years ago that were Progesterone only and had to stop after a week. I was so hateful. I hated myself even. It was evil. Generally I have a decent sense of humor and like to be a bit sarcastic.

I think I took the news pretty good. I really don't feel like I have cancer. I guess I'm not thinking it's all that bad b/c it's DCIS. Then I youtube it and see it's surgeries and possible reoccurances ect. I will probably have radiation. I didn't even ask the dreaded Chemo question. But I've been praying that I would live past my dogs and I feel like God is granting me that. ( I mean- I could get hit by a bus tomorrow)

I told the Dr. We could remove the one breast and just move the left one to the middle so it would be asymmetrical on both sides. I'm sure she thinks I'm a nut and not taking it very seriously. ( I am- probably nuts to some degree, but definitely taking it seriously.)

Even suckier I'm guessing due to the Covid I'll have a hard time finding a "battle buddy" or local support group to go to. My husband is great. He did freak out when I mentioned mastectomy. So I guess I'll go for the lump first. She may not be able to since I have implants and was very small chested before. My thinking is just get it over with instead of having to deal with mamograms and chemo and reoccurances. But on the other hand I almost view leaving them on as "cancer traps" In other words the bc would come back there versus mets.

Well. I'm sure I'll be here alot. I don't want to be all cancer talk with my husband.

I have 3 dogs. One we did the dna test on b/c he's a mutt. He looks like a small rottie, but he's actually a poodle , lhasa apso and pomeranian! 40% they weren't sure. I have an applehead chihuahua and a shih tzu. All three from different shelters.

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  • toria1212
    toria1212 Member Posts: 136
    edited April 2020

    Hi sweetie,

    I am sorry for your diagnosis, but you have found the best place to "hang out", receive support, understanding and helpful information. I was diagnosed on March 19, just as covid19 was ramping up here in Michigan. Ugh. With 4 kids at home, I have been very distracted by the virus and keeping us alive and well(my oldest son is type 1 diabetic) so mostly I don't "feel" or even believe that I have bc. I have stage 1, grade 1 IDC so like you, I am grateful that it is a much lesser sentence than many receive.

    As everyone will share, getting a plan in place with your breast surgeon, medical oncologist and (likely) radiology oncologist definitely helps. But again, with covid, my May 11 scheduled lumpectomy may be just a fantasy. My medical oncologist prescribed Arimidex pre-surgery and I was FREAKED OUT. I have been taking it for over a week, but every other day to start. I have felt fine-hard to fall asleep, usually up til after 1am(often 2am), a teensy headache but no need for tylenol or anything. I have chills in the morning here and there and definitely GERD-I was already taking Prilosec prescribed, but now on Nexium and much better, but not 100%.

    There are sooo many wise and informed women here. You can ask ANYTHING and you will receive a kind and thoughtful response. I have mostly good days, and when the sun is shining even better. I am a faithful person and pray a LOT about God keeping this from spreading. Waiting is hard-you want it overwith, and yet some questions can't be answered til you have the surgery. I always swore if I ever got BC I'd have both lopped off, but now I am having a lumpectomy and praying that it will be enough to keep me well.

    Take care of you, and those precious pups today :). Breathe and let hubby baby you if he's that type. it is going to be ok. Reach out to me anytime. I am also fortunate that as a part-time teacher, and school secretary, I will receive unemployment. I pay a HUGE amount for private insurance as a single mom, but I am not worrying about the cost. I just want to be well.

    (((hugs))) from Michigan,

    xx

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  • Mareny109
    Mareny109 Member Posts: 34
    edited April 2020

    Thank you so much Toria1212. I was starting to feel like the new kid in the school cafeteria that nobody wants to sit with. But that will remind me to check for newbies here as I make my way through this.I chose Mareny109 b/c I am originally from NY. So glad I'm not there, but all of my family is. Upstate. My husband and I moved to Fla.

    I guess if I go to my next appointment with the Dr in a month I will have more answers.

    I just looked up the Amiridex se. Yes, I'd be freaked out too.Is it a 5 year like tamoxifen?

    I'm definitely learning alot here. I hope your May 11th surgery can go through! It would be great for you to get that out of the way! Thank you so much for your response!

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  • AnjaliSawant
    AnjaliSawant Member Posts: 1
    edited July 2020

    hello, sorry to here all of this you are going through. May , I know you did DNA test for what purpose ?

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    Hi everyone, your posts made me feel so helpless. Mareny109, I was so much luckier than you, even though I was diagnosed a second time in the same breast with invasive cancer, because I was diagnosed in Dec. 2018 and had my mastectomy in 2019, a full year before the other "Big C" came on the scene.

    I hope what I say helps and doesn't hurt you more. You, nor any of us, are defined by our breasts. We are who we are, with or without them. I like to think that breast cancer made me an even better person than I was before. I think of all the people I crossed paths with who enriched my life, who I would never have met had if I didn't have cancer. They have touched my life in ways I can't begin to tell you!

    Yes, you are being silly with the "center my one boob" idea, but don't feel bad. I don't know a single person who has/had breast cancer, that didn't have a crazy thought or two, in fact, I am pretty sure I had way more than two!

    I can tell you from experience that you can plan what you want ahead of time, but when the time comes to schedule surgery, the best plans can go out the window. Thankfully your cancer is not invasive now. I don't know what part of the country you live in, I am near Philadelphia, PA, but my brother-in-law, who live outside of Houston, Texas,has Covid. It is a toss up as to which is worse, Covid, or cancer. Ideally we don't want either, but we certainly don't want both!

    Hang in there. Vent here! Say whatever you want to, whatever is on your mind. There are many here who understand your diagnosis well and will hopefully offer more specific advice.

    A lot of time has passed from when you wrote this, did you have surgery?

    Until then, ((((cyber hug))))!

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  • Mareny109
    Mareny109 Member Posts: 34
    edited July 2020

    Hi Mavericlk's mom! I did have my Mastectomy and pathology came back dcis and 4mm IDC. I'm just now probably going to see the oncologist at 9 weeks out. I got the onco shuffle due to having no insurance. Everything went great. Now the PA is talking possible chemo. I see no reason to go that route. I'm thinking they'll be lucky to get me to try the tamoxifen.

    So you had a mastectomy and it came back on that site? :(

    I was naively thinking that I'd get rid of my breast and wouldn't have to do anything else.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    So glad things worked out for you!

    No, I didn’t have a recurrence but I thought I did. The ultrasound sound showed signs of fat necrosis and I will have another ultrasound in six months just as a precaution.

    Yes, recurrences do happen with mastectomies but don’t lose sleep over that. It is pretty rare. I realized after I found the lump that it is still important to do self exams on reconstructed breasts!

    As for your chemo, did you have an Oncotype Dx test done to see if chemo would be effective? I did and it showed that chemo wouldn’t have been very beneficial for me. Everyone is different.

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  • Mareny109
    Mareny109 Member Posts: 34
    edited July 2020

    I haven't had the onco test. Self pay for that is probably 3,400 and it's just going to tell me it's not going to benefit me. That's just not in my budget. They're going to have to give me Tamoxifen.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited July 2020

    Mareny, there is no way of knowing what the oncotype test will say without actually having it. Some women with tiny cancers have high scores and need chemo. I had a microinvasion to my sentinal node but did not need chemo. Get in touch with the oncotype company and ask for a reduced fee; if I remember correctly from older information on here, they will do that.

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    Mareny,

    For the small invasive cancer, what is your HER2 status? And what is the grade?

    And how old are you?

    A 4mm tumor that is HER2+ usually gets chemo. HER2+ cancers, even tiny ones, are very aggressive.

    A 4mm tumor that is HER2- and grade 1 probably doesn't need an Oncotype test - in fact the test is recommended for tumors that are 5mm and greater. Despite this, a 4mm tumor that is HER2- and grade 3 might benefit from an Oncotype test, to get a better idea of just how aggressive (or not) the cancer is.

    Age is relevant because even with equivalent diagnoses and Oncotype scores, cancer tends to be more aggressive in younger women. If you are younger, this could be why chemo has been mentioned. Here again, if you are younger (40s or younger) the Oncotype test might be beneficial.

    Odd to me that chemo was mentioned but the Oncotype test wasn't ordered, unless the cancer is HER2+.

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  • Mareny109
    Mareny109 Member Posts: 34
    edited July 2020

    Hi Beesie! I'm 50 I'm er+ pr+ her2-. An oncotype test hasn't been ordered because I have yet to see an oncologist and I'm self pay and broke. So I'm not sure why the surgeon's PA that I now see and have talked to twice keeps putting that out there. My grade for the IDC was 1- so very slow proliferation.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2020

    Mareny109, you need to update your diagnosis stats. Since you have IDC you are no longer Stage 0 (just DCIS). Do you know your stage and grade on the IDC?

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  • windingshores
    windingshores Member Posts: 704
    edited July 2020

    You can call Genomic Health, the maker of the Oncotype, about financial assistance. Many of the testing companies will do the test at no cost if you meet the requirements.

    I hope you are not saying you have no insurance. If that is true, I would go to a hospital financial counseling center and they can help you get on a plan.

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  • Mareny109
    Mareny109 Member Posts: 34
    edited July 2020

    Sorry Melissa Dallas- I thought I had changed that. Let me try again.

    Thanks for the info windingshores! I will have to call Genomic Health if the Onco mentions it. Yes, I have no insurance.



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