Just Diagnosed and now confused and sad.

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tekwriter
tekwriter Member Posts: 216
edited June 2014 in Just Diagnosed


I was just diagnosed and Friday. I know that I have no outside involvement and no hormone involvement. I will be seeing both the surgeon and Oncologist this coming week. They said at the clinic I would need chemo and surgery. They gave me a book to read. I was doing okay and thinking things through positively until I read the book. The book says I am not eligible for reconstruction because I am obese and a Diabetic. Now I don't know what to think or do. Does it mean I have no options? I was doing fairly okay and now I am just confused and sadder.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    tekwriter, I'm so sorry you've been diagnosed.


    Do you have a copy of the pathology report from the biopsy and the imaging reports from your mammo and any other imaging that was done? It's hard to know what options you have and what questions you should be asking without knowing what these reports say.


    With regard to not being eligible for reconstruction, have you been told based on the size of the tumor that a mastectomy is required, or is a lumpectomy + rads a feasible option but you are choosing to have a MX?


    Sending (((Hugs))).

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    Hi tekwriter, very sorry to hear about your diagnosis. You may not be a candidate for reconstructive surgery, but you also may not need it. If your tumor is large, and they already know that you are going to receive chemo, you can talk to them about having the chemo before the surgery. In most cases, chemo shrinks the tumor, which sometimes makes a lumpectomy possible rather than a mastectomy.


    Also, even with the option of reconstruction, many women choose not to have it and are very happy with their decision. There is a thread about 'flat sisters' - I often read it because reconstructions can fail for any of us & I can see from what they say that it's perfectly possible to be very happy without reconstruction.



    For now, the most important thing is to focus on what you can do to get the best treatment for your cancer. Of course you are confused and sad, but you do have options, and as your treatment plan becomes clearer, those options will appear. It's perfectly legit to ask your doc for anti-anxiety meds to help you through this time & it's great that you found this board early - I wish I had early in my diagnosis.


    (((hugs)))

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  • tekwriter
    tekwriter Member Posts: 216
    edited December 2013


    thank you! I do not have a copy. I asked for it and then forgot to ask again before I left. I will need to request it again. No I don't really know anything, I was just thinking of not the lumpectomy for fear of re-occurence but I will keep an open mind and go down and read through the other groups and keep listening to wisdom of those that have already been there. Thanks.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    tekwriter,


    There are two types of recurrence - local recurrence (i.e. in the breast area) and distant recurrence (i.e. metastasis). No one wants to experience either, but it's distant recurrence that is the really big concern. Breast cancer in the breast is actually harmless - and that's because the breast is not an organ that is vital to our survival. It's only when breast cancer cells move beyond the breast, into the bones or into a vital organ in the body (the liver, for example), that breast cancer becomes life-threatening.


    And this is why the survival rate is the same whether one has a mastectomy or a lumpectomy. Because the risk that you face from breast cancer is not the cancer in your breast - so whether or not you remove your breast doesn't matter. The risk you face is the possibility that some cancer cells might have already found their way into your body, before your surgery and before you even knew that you had cancer. And that's why chemo is given. Chemo is a systemic treatment - it goes through your whole body. The role of chemo is to track down any breast cancer cells that might have already moved beyond the breast, and find those cells and kill them off, before they can take hold and develop into mets. This is why if it's determined that chemo is necessary, it won't make any difference if you have a lumpectomy or a mastectomy. While chemo can be effective at shrinking tumors in the breast, the primary reason why chemo is given is to address the risk that there may be some cancer cells in the body, beyond the breast. And this risk is the same whatever surgery you have.


    Many studies have shown that the survival rate for those who have a lumpectomy + radiation is the same as the survival rate for those who have a mastectomy. The most recent study on this actually showed that the survival rate was higher for those who had a lumpectomy + rads. Ultimately the choice is yours. But if a lumpectomy + rads has been presented as a feasible option for you (sometimes, if the area of cancer is too large, a lumpectomy might not be possible) and if you have concerns about not being able to have reconstruction after a MX, then there is no reason why you should feel that you are doing more or being more aggressive in your treatment by choosing to have a MX.

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2013


    Tekwriter, have you had your oncotype tested yet? Early in my diagnosis, everyone was telling me I would have to have chemo, but then my oncotype came back at "13" (quite low) and recent studies show that chemo/radiation are not very helpful with such a low oncotype, and can actually do more harm than good... so I had no chemo and no radiation.


    This early in your diagnosis, it can be very confusing to know what to ask. This board is a great place to get advice -- I think that the best advice I got here when I was first diagnosed was to take my time, do my own research, ask LOTS of questions, GET (and keep) COPIES OF EVERY TEST AND REPORT, and (the biggest) a strong message that each woman's BC and treatment plan will be unique. New studies are always being published. There is no one single right answer, and sometimes your gut will tell you NOT to do what some doctor is telling you... so you find a new doctor, who is more on the same page with what feels right to YOU.


    My first doc (the surgeon I was sent to after my biopsy came back positive) was a total ass. It actually was a great lesson for me to begin to understand that there are many theories out there... and depending on the training of the doc, and their personality, "the right thing to do" will vary.


    I am also obese -- not by a great amount, but by enough. And, I have had a very happy reconstruction result. No diabetes, though -- so that may still be an issue. However, what many of us have found here is that this BC can be a great opportunity to get serious about our health. Its possible (depending on whether your cancer is aggressive or slow-growing, and many other factors) that you could actually lose weight and get your diabetes under control prior to reconstruction and still have that option open if you decide you want/need it. In fact, with my type of reconstruction (DIEP flap) it was imperative that I have enough belly fat (I certainly did!) to construct the new breasts.


    I also found that some doctors will tell you all sorts of reasons to not have a certain type of reconstruction because they are not trained to do that type, don't know much about it, and yes -- sometimes it seems purely through greed, they will not give you what might be the best advise. I actually had 2 docs who told me to have the MX and then worry about the recon later -- based on what was best for THEM -- not for me. (One wanted to do the MX, but did not do the type of recon I wanted, and the other didn't have a long enough surgery time left for that year to work me in, so wanted me to endure two major surgeries and two recovery times based only on their operating schedule!)


    My best advise -- try to not worry. Do your own research and don't be afraid to question your docs -- (and even occasionally consider their motives). If they are trained in a certain way -- that is what they will recommend... but that doesn't necessarily mean what they suggest may be best for YOU.


    When you feel overwhelmed -- take a break. Go see an upbeat movie, or take a walk and feel the sun on your face and really listen for the birds in the trees. Stand out under the stars and feel the immensity of Life -- all that will still be available to you no matter what the next tests/surgeries bring. Breathe in and breathe out.


    On January 1st of this year, I surprised myself by saying that I had just had the BEST year of my life -- despite my beloved father's death, and my own dx of BC and double mastectomy!


    You can not only "do this" -- but you may be surprised to find that next year at this time you, too, may say that you just completed the best year of your life. We can be catapulted to a new plane of consciousness by "tragedy" -- and it's only tragic if you write it that way.


    All my best...


    Linda

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited December 2013


    Hi Tek! I am so sorry that you are facing this journey. One thing I want to add is that sometimes doing chemo prior to surgery (neoadjuvant) makes a lumpectomy possible where it otherwise would not be. So another question to ask. I also need to remind you that everything in the book won't apply, so it is very possible to scare yourself out of your wits unnecessarily.


    In these situations, it's usually helpful to ask yourself what you know so far.


    I had a medium sized tumor, and was thrilled to be able to do just a lumpectomy. I am a bit lopsided in the altogether, but just fine in a bra, especially with a bit of shaping.


    When I was going through diagnosis, I found that getting outside and walking (or cycling since I am a cyclist) did wonders for clearing my head. - Claire

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    Linda, tekwriter mentioned "no hormone involvement". I'm guessing that means ER-/PR- which means no Oncotype test. It also means that chemo is often prescribed even for relatively small tumors, because there are no other systemic treatments (i.e. hormone therapy) available. I know that sometimes surgeons make comments about chemo (either that the patient will need it or won't need it) and once more tests are done and a medical oncologist is involved, the recommendations change. So that might happen here too. However I'm guessing the chemo comment was made because of a negative hormone status, in which case it is in fact quite likely that chemo will be prescribed.


    tekwriter, there is a lot of speculating and guessing going on right now in our comments and suggestions. It will all be a lot more clear when you get your pathology and imaging reports.

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  • tekwriter
    tekwriter Member Posts: 216
    edited December 2013


    I will be sure to post when I know more. I feel that part of my problem is it is hard to be hope when i do not know what I am facing. When I know what is happening and can start making lists and sort of have a time frame and know what is going to happen I feel I will be able to face this much better. I ordered some PJ's today with button fronts for the hospital but that is about the only positive thing I can do. I still hate to order the head wraps. I am hoping maybe I can find some here in town at a better price.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    trek writer, take a friend with you to your appts. Have them listen carefully & take notes. It is impossible to take it all in yourself...I am sorry that you are having to deal with breast cancer..Keep us posted..

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  • tekwriter
    tekwriter Member Posts: 216
    edited December 2013


    HI everyone. I met with the surgeon yesterday. Some may have seen an earlier post I had about genetic testing. My first nurse navigator left a lot out so I was kind of blindsided by the call about genetic testing with terminology I had never heard before and very frightened when I looked up the type of cancer. I have a triple negative stage 2 cancer. They are testing for the BRAC1 and 2 which may change how I want to plan my treatment. The surgeon says I most certainly should be able to have some sort of reconstruction, just not the type that uses my own muscles and fat because that is too hard to heal for a diabetic. I do feel a little better now.

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2013


    Great to hear you are feeling better about the news!


    One important thing I learned during my own BC journey is to try to not worry -- try to stay fluid -- because (at least for me) it seemed that (especially in the beginning) there were so many tests and appointments and biopsies -- each offering up new options and each changing the course of my potential treatment -- so that just when I adjusted to one "plan" a new one offered itself up.


    Cancer seems to unfold at its own rate of speed, so 'worrying' and 'being impatient' are just a frustrating waste of energy, during a time that could be spent fully appreciating the beauty and loved ones around us with a renewed intensity. It has been (for me) a year and a half of coming into clarity about what (and who) is most important in Life... and a surprisingly wonderful opportunity to discard the silly/vain/time-wasting parts of my life that no longer served me, so I could focus all the energy I had on the "best".


    No matter what this journey brings, it is also an opportunity to become a different (and most-probably more aware/loving/appreciative/patient) person.


    One of your biggest 'treatment' choices will be to choose your own mental state.


    For me, cancer helped me become a "Glass half-full" sort of person (first as caretaker to my dad during his cancer, then continued through my own BC).


    You can do this!


    All my best,


    Linda

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  • tekwriter
    tekwriter Member Posts: 216
    edited December 2013


    that is wonderful advice Linda and I certainly shall take it. I think my biggest frustration has been feeling like I want to do something to help myself and not just sit and die. but i will plug into what you said and use that as my mantra instead. Thank you very much.

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  • msphil
    msphil Member Posts: 1,536
    edited December 2013

    glad you feel better about things HUGS go out to you,msphil(idc,stage2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxigen)

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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2013


    tekwriter- there is a wonderful thread here called "Calling all TNS". We are all triple negative and the ladies are so supportive and helpful. There are some who are just beginning the "ride" as you are and some that are past all treatments. Please come over and join us.


    Tiffany

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