New survivor

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celebrate07
celebrate07 Member Posts: 3
edited March 2014 in Breast Cancer #1
Hello...I have been recently diagnosed with DCIS, had my surgery, now facing the decision of radiation and Tamoxifen and feel so overwhelmed with all the information and decision process. When will I stop feeling so scared and vulnerable?? I often awake with that split second and think..."boy that was a bad dream"...only to realize it's not a dream. Guess I'm reaching out to you folks to see if the waters do calm soon??
Thanks,

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  • seof
    seof Member Posts: 819 Member
    #2
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    I do not know what you mean by "recently" or "soon". It is my experience that time seems much shorter when I look behind than when I look ahead. I think feeling overwhelmed and scared comes with the territory for survivors. For myself, it comes in waves. As each new phase approaches it brings new decisions, questions, and a new sense of fear and being overwhelmed. However, the shock and sense of living in dreamland have given way to acceptance of reality and determination to make the best of it. For me, my faith in Jesus, my family, and my church are the primary sources of emotional and daily functional support. Asking questions of the Doctors, doing my own research to back up their answers, and asking my "fore-mothers" on this site help me feel more secure in the decisions I make.

    You have come to a good place for help. seof
  • celebrate07
    celebrate07 Member Posts: 3
    #3
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    seof said:

    I do not know what you mean by "recently" or "soon". It is my experience that time seems much shorter when I look behind than when I look ahead. I think feeling overwhelmed and scared comes with the territory for survivors. For myself, it comes in waves. As each new phase approaches it brings new decisions, questions, and a new sense of fear and being overwhelmed. However, the shock and sense of living in dreamland have given way to acceptance of reality and determination to make the best of it. For me, my faith in Jesus, my family, and my church are the primary sources of emotional and daily functional support. Asking questions of the Doctors, doing my own research to back up their answers, and asking my "fore-mothers" on this site help me feel more secure in the decisions I make.

    You have come to a good place for help. seof

    I guess I mean recently because I was diagnosed August 21st. That is just a blink back in time. I've just gone through my medical oncology consult and my radiation consult and so confused with decisions. Because I have been "blessed" with DCIS?? so they say, I have actual options for treatment. I am asking many questions and researching what I believe are good websites for more definitive treatment, but I am finding with DCIS, there is limited absolute statistics and more relative results. I understand the research focus is on invasive and should be, but it seems many opinions fall towards aggressive therapy for a non aggressive presentation. As you may assess, I'm in that turmoil phase of diagnosis.....look forward to the clearing, even if it's for a short period of time as you say...

    Thanks, Brenda
  • 3cbrca
    3cbrca Member Posts: 206
    #4
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    Sorry that you have to deal with it at all. The upside of DCIS is that you do have time to make the decisions for treatment. (I had locally advanced disease and started chemo within a week of diagnosis - not a lot of decision time) I have several friends who have had DCIS and they all made different decsions. Knowing that you have time to let some of the information settle in and time to weigh it might lift some of the whirling in your head. What was similiar among all of them,was that they took their time and felt comfortable that they had made the right decision for them.
    It has been discovered that some women are not Tamoxifen "receptive" Before you start TAM be sure they do the Cytochrome P450 test to see if TAM will work for you. You may need an Aromatase Inhibitor (with Ovarian Suppression Drugs-if you're premenopause). Sorry to add more info, but a lot of doctors are still not doing this test and you need to be sure to ask for it. (more info on the Mayo Web site). Breath and then gather your info and make a decision.
    Best of luck. Welcome!
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
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    3cbrca said:

    Sorry that you have to deal with it at all. The upside of DCIS is that you do have time to make the decisions for treatment. (I had locally advanced disease and started chemo within a week of diagnosis - not a lot of decision time) I have several friends who have had DCIS and they all made different decsions. Knowing that you have time to let some of the information settle in and time to weigh it might lift some of the whirling in your head. What was similiar among all of them,was that they took their time and felt comfortable that they had made the right decision for them.
    It has been discovered that some women are not Tamoxifen "receptive" Before you start TAM be sure they do the Cytochrome P450 test to see if TAM will work for you. You may need an Aromatase Inhibitor (with Ovarian Suppression Drugs-if you're premenopause). Sorry to add more info, but a lot of doctors are still not doing this test and you need to be sure to ask for it. (more info on the Mayo Web site). Breath and then gather your info and make a decision.
    Best of luck. Welcome!

    I agree. I didn't have a 'choice', being stage II invasive breast cancer. But this was my second, having recovered from stage III rectal 6 months earlier. I postponed starting chemo, didn't want it again, went for 5 second opinions to find someone who would tell me I didn't have to.

    I guess what I am saying is that you DO have some time...I think when we hear those 3 words, "You have cancer" all we can think about is OUT! NOW!. Actually, you DO have time for a thoughtful researched decision. Ask around, call the American Cancer Society (1-800-ACS-2345). I went to a celebration last night where a breast surgeon was talking about implanted radiation instead of whole-breast...takes less time (inserted into the lumpectomy space, then 5 days of treatment, then removed) than traditional whole-breast rads (33 days)...and is less damaging. Call MD Anderson. Or UCLA's breast center...ask...

    Hugs, kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
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    Yes, there will be calm. If you allow it. Breathing is good. Once the flurry of making treatment decisions, etc is over, then you will go from "I have breast cancer" to "I HAD breast cancer, and now I'm moving on".

    The emotions are different in each person. I jumped on the 'change the world' bandwagon, volunteered for every cancer-related thing on the planet, and almost sent myself into bad health from exhaustion...I have now (1 year post treatment) centered better, and even tho I really don't LIKE pink, I graciously accept the ribbons/pins when they are given, secretly knowing I will pass them to someone else...

    I pass my survivor pins to you!

    Hugs, Kathi
  • Jantique
    Jantique Member Posts: 3
    #7
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    I'm a Really new survivor--I also have DCIS, and I'm having my surgery next Wed.--so I know how you feel. You're told you're lucky it's "only" DCIS, but it's still an invasion of your body, and something that I, at least, was totally not expecting ever! Good luck with your treatments!
  • celebrate07
    celebrate07 Member Posts: 3
    #8
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    3cbrca said:

    Sorry that you have to deal with it at all. The upside of DCIS is that you do have time to make the decisions for treatment. (I had locally advanced disease and started chemo within a week of diagnosis - not a lot of decision time) I have several friends who have had DCIS and they all made different decsions. Knowing that you have time to let some of the information settle in and time to weigh it might lift some of the whirling in your head. What was similiar among all of them,was that they took their time and felt comfortable that they had made the right decision for them.
    It has been discovered that some women are not Tamoxifen "receptive" Before you start TAM be sure they do the Cytochrome P450 test to see if TAM will work for you. You may need an Aromatase Inhibitor (with Ovarian Suppression Drugs-if you're premenopause). Sorry to add more info, but a lot of doctors are still not doing this test and you need to be sure to ask for it. (more info on the Mayo Web site). Breath and then gather your info and make a decision.
    Best of luck. Welcome!

    I really do feel blessed that if I had to be selected to fill that dreaded 1 in 8 women develop breast cancer in their lifetime, I am so glad it was DCIS VS invasive. But to tell you the truth, having choices almost is more anguishing then a Doctor telling you this is what is needed to do. As a patient you research your issue to death, talk to all your Doctor's, strive for informed consent, but to be the one to make the decision for treatment is so very scary. I agree, I need to slow down and let all this sink in, but I feel like I'm in a funnel cloud of information. I appreciate your advise and kindness. I also wish you great success and successful outcome.
  • babs49242
    babs49242 Member Posts: 193
    #9
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    celebrate07 said:

    I really do feel blessed that if I had to be selected to fill that dreaded 1 in 8 women develop breast cancer in their lifetime, I am so glad it was DCIS VS invasive. But to tell you the truth, having choices almost is more anguishing then a Doctor telling you this is what is needed to do. As a patient you research your issue to death, talk to all your Doctor's, strive for informed consent, but to be the one to make the decision for treatment is so very scary. I agree, I need to slow down and let all this sink in, but I feel like I'm in a funnel cloud of information. I appreciate your advise and kindness. I also wish you great success and successful outcome.

    take time to meditate...you'll get focus on what you want to do.
    Hugsssss
    Cindie
  • Lludwig
    Lludwig Member Posts: 5
    #10
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    celebrate07 said:

    I guess I mean recently because I was diagnosed August 21st. That is just a blink back in time. I've just gone through my medical oncology consult and my radiation consult and so confused with decisions. Because I have been "blessed" with DCIS?? so they say, I have actual options for treatment. I am asking many questions and researching what I believe are good websites for more definitive treatment, but I am finding with DCIS, there is limited absolute statistics and more relative results. I understand the research focus is on invasive and should be, but it seems many opinions fall towards aggressive therapy for a non aggressive presentation. As you may assess, I'm in that turmoil phase of diagnosis.....look forward to the clearing, even if it's for a short period of time as you say...

    Thanks, Brenda

    Hi, Just diagnosed in July, invasive ducatal carcinoma, had bilateral with reconstruction, I am 56 with mother,aunt 2 brothers with cancer. My tumor was a little over a cent. I have my second consult with my oncologist, I am so confused, should I take the chemo or not. They have told me maybe l out of 100 women would benefit from it, how can they compare you to 100 other ladies who all have different backgrounds and bodies. This is the hardest part of this nightmare. Good luck to you, I hope I can find the answers soon.

    Thanks
    Linda

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