Dcis and obese with lots of health issues, mastectomy

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Jadedjo
Jadedjo Member Posts: 469
edited July 2018 in DCIS (Ductal Carcinoma In Situ)

Hello. I'm just newly diagnosed on Friday and couldn't get much from the biopsy results related to me over the phone other then it's around grade 1-2 but they kept stressing it was caught early at one point they said very early. Which is great. I'm not entirely sure yet if it means I just have dcis and it's not invasive yet. 

My issue is I already have a lot of health issues and just having a horrible past 5 years that has been non stop  that have pretty much destroyed my quality of lifeand left me in a very . I KNOW if I have to go through chemo and radiation( because sensitive skin issues is one of the many problems) i an done even at early stage I won't be able to get through it. I already have similar symptoms to those on chemo and having it multiplied would be the last straw. Add on side effects from tamoxifen (I am about to be 44) and my quality of life will go to zero.So I been researching and I saw if you got dmx and it's early enough you can avoid having to do all three. The threat is still there but greatly reduced. For me no boobs are worth keeping if my quality of life goes down to zilch to keep them. I won't know much more until I see my surgeon. Please don't tell me you will get through it l.i know my mind and body enough to know I won't and if losing my breasts is the price I will pay it. I don't even know if I'm still in dcis until they remove it and do pathology but am looking at choices that will greatly reduce my chances of reoccurance without having to deal with both short and long term side effects that will completely destroy what little QOL I got going on. 

There is also the issue that I'm,well now it's less because stress has killed my appetite and it's dropping like an anvil ,but I'm about 100 pounds overweight lifestyle change including a new diet and exercise is going to be one of the things I'm planning to do to help reduce reoccurance because I'm pretty dang sure it's my pcos hormone issues and my obesity that contributed to this.

My question is: I have been reading that there is a much higher rate of failure and major complications in obese women for reconstructions.like I said lifestyle change, a diet suitable to my metabolic issues  and physical activity is one of the changes I will be implementing and one hopes it leads to weight loss but that means my body will be going  through some  major changes too.

Has anyone here gotten a double mastectomy with reconstruction done at a later date, like even a couple years later.

I would like to try for the diep flap if I am considered a good candidate If I go down this road I would like to be as healthy as I can before I face that kind of surgery. The mastectomy is going to be bad enough for me right now if the surgeon agrees it's the way to go.

I guess I want to know for those who waited how difficult it was? My breasts are the only feminine thing on my body so if I'm going to be flat for a couple of years as I get myself to a better place emotionally and physically.I would like to know what I might face mentally,physically and emotionally  ? 

I know everyone is different so experiences are different but there are probably some things that are the same for everybody.

Thank you for any future responses in advance.

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited July 2018

    I know it's kind of scorched earth if it's dcis so I am also asking people who chose to go down that road with a early diagnosis.

    Thank you.

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  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    You need to have the full diagnosis and be presented with treatment options before choosing one. I know, waiting is hard!

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited September 2018

    @ oxygen18

    I get what your saying.

    My doctors don't seem in an all fired hurry to inform me of anything.

    I've already mentioned my QOL is dismal already. Just the fact that I been dx with breast cancer has reduced it even further. I can live without breasts my love love is as dismal as my QOL and this has pushed me to accept for however long I live  it's going to be unloved. I have spent the past two days just looking at the common side effects of chemo and radiation and tamoxifen or any medications really and I'm thinking I already have mild versions of these symptoms with my sensitive system and sensitive skin it will more then likely be magnified by 100 and ya some will be temporary and some won't and it looks like the some that won't tend to be the ones I have mild versions of already. I can't live like that. I could barely live like this before they said you have cancer. I'm thinking of how things are now when I just been diagnosed and I'm being ignored and abandoned already and I'm thinking I can't do this. This already awful life of mine isn't worth living if all I'm doing is suffering. 

    So I need to decide what I'm willing to do and since the doctors are taking thier time letting me know anything.I got to decide on my own with very little information. I don't trust doctors. Years of writing me off because I was fat and "fat causes everything when your morbidly obese" attitude that missed two mild issues that were not caused by fat. I haven't trusted them since they "forgot" I was on medication for five years that your supposed to only be on less then one due to what it can do to your stomach lining. I don't trust them and I will never again trust them.

     They won't do lumpectomy with no other treatment I know that.i know about lack of feeling, I know about not feeling like a woman afterwards but I barely feel like one now after 30 plus years of rejection from the male species. I can live with it. I'm at higher risk for other cancers due to health issues and genetics.i know I'm going to be in that chemo chair and rads room eventually and I am not ready to do it right now even if it costs me my life because really what life? Why would I want to extend this hell. The only reason I'm even fighting is because of anger and this is my way of flipping a major bird to god and the Universe .and maybe a small little part that thinks maybe things will change but been saying that for 5 years and trying to make it so and it's actually gotten worse.

    So my only option is surgery.

    They don't seem to be moving all that quick not even my gp like did he really think I would be ok waiting two weeks to talk to him once I been told I have a carcinoma in my breast? I'm having a hard enough time waiting until Thursday.

    Waiting just not hard it's impossible when your trying desperately to find a reason to even live to the next year and the year after I still have no idea how I made it this far but I got here with still some health  and you have just been given a reason to make you think that something out there doesn't want you to.

    So I get what your saying I don't know anything yet about the cancer but I know everything about my life and now I'm having to know everything about my life with cancer in it and things aren't  looking bright and shiny for me in any situation. I was supposed to be plodding forward towards working and finally being able to support myself and held the hope that I could get a handle on my health enough that I could finally have a life ,a life that I just might be able to survive in and then I got dx. Even if it happens after this 

    Early stage or not I got even harder times then I had endured already coming towards me. I need some control.at least knowing what I'm willing to do when they tell me treatment. 


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  • Icietla
    Icietla Member Posts: 1,265
    edited July 2018

    If your mastectomy surgery choice depends on (assumption of) reconstruction, understand that reconstruction does not always work out. Some women learn that because of health issues, they cannot have reconstruction. Some have efforts at reconstruction procedures over years, with lengthy waits between.

    Yes, breasts can be feminizing to one's appearance. So can hairstyle/s. So can the way/s one dresses.

    A hair follicle has only so many lives (only so many in the series of its hair growth cycles). This is why repeatedly pulling hairs out can result in permanent alopecia. I suggest keeping your hair covered so it will not be so convenient for you to grip absentmindedly in your times of such stress.

    >>I'm being ignored and abandoned<<

    You have just been to see your Counselor who is looking into the possibility of additional benefits for you; you have just been told about your biopsy result; you have an appointment to see your regular Doctor in a few days; you have an appointment to see a Surgeon; you have been getting help from the Crisis Hotline; and you have had people here encouraging you.

    It took seven days and about eight hours for me to learn of my preliminary biopsy report -- the disease type, grade, and hormone receptivity. It took ten days for my complete biopsy report to be issued.

    >>did he really think I would be ok waiting two weeks to talk to him once I been told I have a carcinoma in my breast?<<

    The Radiologist did not tell you that you had cancer. The Radiologist told you that something very concerning was seen to impress upon you the need for a biopsy to evaluate it. They do not deliver cancer diagnoses unless they are certain. They would not want to put someone with a benign condition through the needless distress of believing s/he had cancer.

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  • kaywrite
    kaywrite Member Posts: 219
    edited July 2018

    HI Jadedjo,

    I felt very anxious about time when I was diagnosed, too. I was constantly harping at my Surgical Oncologist about speeding things up, was it safe to wait, etc. I was frightened and angry, too. I did not have the other health issues you are contending with, so I understand how that could make it even more difficult. I was/am ER/PR+, meaning my particular DCIS was treating my milk ducts like a buffet. I did not understand how I had excess estrogen because I was menopausal. My SO explained the adrenal gland and body fat contribution to estrogen - probably rolling his eyes because I was such an aggressive questioner.

    I chose lumpectomy/radiation/hormone therapy due to the type of DCIS I had, and based up my SO, MO, and RO feedback and experience - as well as my own exhaustive research. And that's just it: this is exhausting, every aspect of it.

    Here are some things I wish I'd known in advance: the hospital has a social worker, a patient advocate, and a psychiatrist for oncology. All are covered by my insurance, and I have utilized them all - to my benefit. They have all helped me through these rough emotional decisions, administrative miscommunications, quality of life questions and issues. I was matched with a peer partner - who is a woman that had the same breast cancer as me and now volunteers to be a sounding board for others having the same experience. The psychiatrist helped assure I was asking myself the right questions and was being accountable for the things I could control. All of this combined contributed to a better quality of life in the 9 months I've had breast cancer to contend with.

    Just Friday my Medical Oncologist took me off one hormone therapy (anastrozole) for a month until we try another - Tamoxifen (I had a non-threatening but quality of life side effect to anastrozole). Tamoxifen came with the potential for other serious side effects, which she explained were riskier for sedentary lifestyles or obesity. So yes, lifestyle changes sound like a good idea.

    Chemo was not on the table for me (or anyone with DCIS to the best of my knowledge), thank goodness.

    I hope this is helpful in any small way. Ask about your resources, take advantage of them, get the help you may need for mind and body. Best wishes.

    Kay

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited July 2018

    @ lcietla

    I am well aware of the chance of rejection and that not everyone qualifies. In fact the more I read, if I go in that direction flat is the way to go.

    I'm being ignored and abandoned by the people I know PERSONALLY not the medical community. But try to remember the medical community is impersonal. When your alone with this you want somebody.sonebody who's not paid to support you.

    Cutting it short enough I can't grab it is better.its by the time it gets long enough for me to grab at again things will be well on thier way and I will be less likely to yank.i did the same thing when my mom died. Went and got a short pixie cut by the time it grew out I had more control over things and wasn't pulling at it anymore. I've been through the hair loss thing before due to high stress I know what works for me. Trying to cover it didn't work last time which is why I had to get it cut.

    I get it.you had a long wait. I'm sure you remember what it feels like. Try to remember I'm in the middle of that purgatory right now. I know there is no magic wand to make things go faster.everybody deals with things differently. How you deal is completely different then how I deal. Calling the line,talking to a counsler, writing posts on a community is helping but it's still impersonal. We don't know each other personally. We are people who are in the same boat with different paddles. Mine might not be bigger then some have to work with  on that boat but it's still a paddle I have to row with in a boat nobody wants to be on.

    Right now I need somebody to make me not feel so very alone and there is nobody there because I am that very alone.i have tried to change that before this,failed.

    I was not talking about the radiologist asking me to wait 2 weeks.I was talking about my gp.You know, that person that gets the biopsy results along with surgeon. The person who will at least have some answers I know not all but some.more then just "it's cancer". He wanted me to wait til just a few days before the breast surgeon to see him. I don't see the BS for until end of first week in august. That's a way to go with only knowing you got cancer,that's all I know.that it's ductal in some way. Not what type,not what size on the ultrasound. knowing that your doctor will have those results before the end of this week if not already.would  you wait two weeks to have some of the answers long before that?i know the surgeon is the only one who can tell me which treatment is best.

    I was already broken by life, now I am broken,scared and beaten down again when I had barely been able to get up from the last beating.

    I am trying the best I can to deal with this nightmare. I thought this was the place to do it but from the tone of your post I guess not. Noted.

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  • Icietla
    Icietla Member Posts: 1,265
    edited July 2018

    Jadedjo, we all want to help. We want you to be as happy and well as you can be.

    I am sorry for my misunderstanding about your appointment schedule, etc.

    >>from the tone of your post I guess not.<<

    I tend to be terse in my typing -- only in my typing. Typing is usually rather slow, difficult, and painful for me. We are not all similarly equipped.

    Something in the nature of desertion, ignoring, avoidance, or shunning by the persons we thought closest to us happens to many of us upon or shortly after diagnosis. Many persons with cancer learn very quickly who are their friends and who are not their friends.

    I wish you would be kind to yourself. So many things you say -- dreadful of your life, and that it could never be better, etc. -- strike me as very discouraging and unkind. I would not want anyone else saying those things to you nor to anyone else. Life has given you some hard blows, so to speak -- why beat yourself up more? You deserve happiness. You deserve kindness. You owe yourself kindness.

    Peace and Blessings.


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  • JoyceA
    JoyceA Member Posts: 829
    edited July 2018

    Jadedjo, I’ve been reading your posts and am saddened that you are facing this awful unknown journey on your own. I hope you find a local support group so that you will have someone to hold your hand and give you a hug if you need them. Please take good care of yourself.

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited September 2018

    @lcietla

    Thanks. My reaction to you post  comes from being a little more sensitive about things right now..

    It's actually mostly family members who have abandoned me.i should have known better then to expect anything from them except apathy and silence.

    @joyceA

    I think that's what is the hardest about all of this. I don't have that person when in the middle of the night this hits me like a two ton anvil to turn and hold on to.or more I don't have that reason to endure.if I had a child or a loving husband or boyfriend I would say ok I got to fight this for them. But I have an empty life and after this, if there even is an after this, I have an even emptier future.

    I do have someone looking into local support groups to see if there is one that is suitable for me.

    Blessed be to both of you.

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