Newly diagnosed today and feeling shattered.

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13

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  • nonkyboy
    nonkyboy Member Posts: 188
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    Thanks Steplightly,  Still a battle in front of you but hopefully one that you will come out of at the other end feeling positive about. I will have more info tomorrow and hopefully a plan in place which will make me feel better. Please take care of you x
  • Romla
    Romla Member Posts: 2,092
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    In your kit is a journal which you could diarise visits I too have poor memory. Lots more info on bcna site too. Hoping all goes well - am here if you need me as are many others you are not alone xo
  • nonkyboy
    nonkyboy Member Posts: 188
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    Thanks Romia. The kit arrived this afternoon so I have been having a good read
  • steplightly
    steplightly Member Posts: 185
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    All the best for today nonkyboy.  I hope you have had a decent rest overnight and the mindgames have stayed in check.  The 'waiting' in each step is as challenging as the process and hopefully today you will get as clearer picture as possible. Glad your sister is with you and the tape recorder is a brilliant idea.  So many words, unfamiliar phrases etc and while they try to explain I found I closed off the further it went, not through denial, but literal inability to continue absorb. You are in my thoughts and prayers.. stay in hope  xo
  • Romla
    Romla Member Posts: 2,092
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    Dear steplightly - well said. Also know it's ok to get the Wobblies and that there is a net here to catch you xo
  • nonkyboy
    nonkyboy Member Posts: 188
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    Thanks girls. I had a shocking sleep last night. Ended up falling asleep around 6am for 2.5 hours. Thank God for my sister and the tape recorder because I think I'll need them. Like you step lightly, I close off when I just can't absorb any more. I'll let you know what the plan is once I know.
  • nonkyboy
    nonkyboy Member Posts: 188
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    I saw the bs today and she is doing a lumpectomy and sentinel lobe biopsy on the 16th August. Before this happens I need to see my gynaecologist to have the mirena removed. I also have to have a bone scan, CT chest, abdomen, brain and US abdomen. I also need to see my cardiologist and have an echocardiogram and stress test plus have multiple blood tests done. So although surgery is 7 weeks away  I will be very busy! She has said I will be having radiation definitely but she's unsure at this stage about chemo until she gets results from all the tests including the biopsies of lymph nodes. She has also said a hysterectomy may be necessary if my body doesn't go into menopause. She is going to try and avoid mastectomy if she can as I have a compromised immune system and she's worried that the scar won't heal. Lots to think about and a full on few weeks/months ahead of me it seems. I feel much calmer after chatting to her today though.
  • fairydust
    fairydust Member Posts: 290
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    @nonkyboy I remembered the whirlwind of tests and procedures. It takes so much time going to and fro. Then it is quite and surgery is happening. It will be easier from now on as you have some idea what you are doing. To say it will be a walk in the park is silly there will be ups and downs. 
    Sounds like you have a caring bs that you like makes all the difference . Good luck
  • nonkyboy
    nonkyboy Member Posts: 188
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    Thanks fairydust. I do like her and feel comfortable with her care.
  • primek
    primek Member Posts: 5,392
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    @nonkyboy You can just have ovaries removed if you don't go into menopause which is a much smaller op. Just thought I'd let you know that. 
  • socoda
    socoda Member Posts: 1,767
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    @nonkyboy, so good that you're that much closer to being cancer free. Xx 
  • melclarity
    melclarity Member Posts: 3,507
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    @nonkyboy sounds like you will be very busy, but at least you are on your way with a plan. Things will be clearer once you get pathology back from your lumpectomy, treatment can also change, so step at a time. 

    @steplightly you sound very level headed and taking it in your stride, I've been through the works in 6yrs, and wanted to say that both of my diagnosis in 2011 and 2015 were not picked up in mammogram but were in ultrasound, can be quite common and most don't have a lump at all. 

    @Romla You are correct, nothing is definitive until a lumpectomy, biopsies are only a piece of the puzzle, for me both times were useless. Thankfully I have an amazing Surgeon who I trust implicitly if it werent for his gut feeling of ignoring the original biopsy results I hate to think where Id be. A lumpectomy confirmed his suspicions as biopsy showed nothing as they missed it. :/ Chemo is derived from what Grade the Tumor is, so I was Stage 2 but Grade 3 which is automatic Chemo my Oncologist said, plus mine was a recurrence in the same spot after having radiation 4yrs earlier and tamoxifen. I now have Osteoporosis since Chemo LOL to be honest I wouldnt know, and am on 2 Prolia injections a year. I take powdered magnesium and caltrate in water every day, Vit D & C. Working with an Exercise Physiologist which is awesome...am really starting to kick goals now. Oh and on Aromasin, switched from Arimidex but their side effects are the same, oh well. 

    Hugs everyone, you will absolutely get through one foot in front of the other and out the other side wondering how on earth you did it!!! Lifes good if you keep going. xxx Melinda 
  • steplightly
    steplightly Member Posts: 185
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    Hi all,  Nonkyboy I am glad you now have a calmness after speaking to your specialist today. You now know what you need to do and can work with her to step into each of the new spaces.  Melclarity thanks for sharing about your journey.  At times the non pick up in mammogram has tended to strike at me a bit and I get concerned for women generally as this seems to be the first port of call in diagnosis other than breast self checks etc.  I have had to let that go for me which has helped but I do share with friends and family that part to encourage closer checking. For each of us there will be hills, valleys, plateaus along the way in this new road.  I am thankful that this space is open to us 24/7 and while there are different stories and many paths we can stand, sit and be in the support presence for each other.  Hugs to all and hope today is all it needs to be for you.  xo
  • melclarity
    melclarity Member Posts: 3,507
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    @steplightly 6yrs ago after my first diagnosis I urged 2 work colleagues to get checked. They had no lumps or anything..both had Breast Cancer and didnt know it. So I believe there are so many women who have it and don't know it unfortunately, because its not picked up in a mammo and self check well doesnt come into it alot of the time. It is alarming, I urge everyone to start the process and get in the system, I was under 40 when I started as my Mum had BC at 40 but I don't have the BRCA Gene. xx Melinda
  • steplightly
    steplightly Member Posts: 185
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    Yes Melinda.  I would agree with you it is alarming.  My mum hasn't had it although she does remember having something done to her breast a very long time ago but cant tell me what (she is 84 this year).  My younger sister was recently diagnosed with dcis and has been been through surgery and radiation but is having some other issues and seeing the bc nurse and her specialist today.  Hers was picked up in mammogram.  I didn't even pick up the cyst because of the way I was breast checking and it would move away.  I don't know if there is a gene connection for mine and have to wait now for clarity for the next phase.  My sister and I are discussing connecting our specialists for discussion of results etc (don't know if that is possible) as we are in different states or if it would be helpful.. any thoughts?