New Here and Just Diagnosed

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    I have made a decision. I am going with second/three opinions. If I like the Sloan, i will go with them. After talking to someone, they pointed out that I need to go to a cancer center not a hospital with a cancer department. Just waiting for pathology report and I am already set up with Sloan.

    I am just feeling better that I am going to finally meet with an oncologist. I just want to get the right treatment, no the best treatment for me. All my anixety has gone away once I made this decision to a cancer center. I know I will have my moments and stress, but I rather be stressed from what is going on with me then stressing over the people who are treating me.

    This group has help alot and I will be writing down questions for my second opinion appointment.

    Here is the start of me getting on the right path, it will be a long path but I know I will get to the end and live a long and happy life.


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    That sounds great justme1964. When is your appointment at MSK? That is where I'm being treated and I've been very happy with them.

    My tips for you are that the hot chocolate from the machines is surprisingly good, and that their patient portal/app is great and totally worth the time to set up.

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    first appt is 1/23 it is for a second opinion but I am going to stick with them.

    What I like so far, when they confirmed my appt they said time I get there a treatment plan will be discussed.... again never met with an oncologist.

    Just what the best care and avoid any unnecessary surgeries, etc. Oh trust me, if Sloan says more surgeries I will. I just want to know with 5 positive lymph nodes removed it necessary to remove more? If so, I am on board.

    Again, just as the best treatment and move on with my life.

    Feeling super good with my decision to finally go to a cancer center not a hospital.

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  • Mncteach
    Mncteach Member Posts: 274
    edited January 2019

    Such great news! Having confidence in your team and a plan makes the worry so much easier to handle!

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    I am very happy in making the decision to go with Sloan Memorial.

    Just some concerns about the 5 positive lymph nodes.

    During surgery doctor did not feel anymore then the 5 she removed, she wants to do an anxillary nodes removing all my nodes; before anything i am getting that second opinion if the surgery is necessary and if it is then all on board... what are the chances of all those being positive and chances of spreading beyond the lymph nodes.

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    Just wondering, my doc, well old doc, when I met with her she told me she had part of my pathology report, told me that 5 positive nodes, now pathologic stage 111a and prognostic 1b. She recommended the PET Scan, chemo, and radiation, and some kind of pill. Ok, really don't understand that, but will ask my oncologist. Just wondering what or if anything else is on a pathology report could change my staging again??? I am breaking ties with the doc because I am going with a new one. I have been searching the internet and of course I am finding thing I don't understand and making me a little nervous. i know better, just to ask my questions with this group.


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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    I don’t think I’ve ever heard anyone say their doctor had part of a Path report much less quoting from an incomplete one. Why would she do that? Which part is missing? If it’s me I’m not making any decisions until the WHOLE report is available and I’ve conferred with my oncologist. He/she is the decision maker about treatment not your surgeon.

    Diane

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    This is the reason I am leaving this doctor, to me, she did not tell me everything.

    At first, I did not want to hear what was in the report, just wanted to hear treatment, but at my appointment and to give me a piece of mind, I said ok, let's hear it... she said that she did not have a written form and had some information and was waiting on the confirmation of the cancer being combination of lobular/ductual. don't know why she did what she did, but she did send a report to my primary doctor stating the same thing, that she only had part of the report.

    I know the new place I am going does have the entire report. When I confirmed my appointment they did mention what I have is manageable, so I am guess no more surprises when I met with the oncologist. Honest, I just want to hear, if I need an anxillary node removal, if so, I will schedule the surgery with them, then when, what type, and how long for chemo, if they have a cooling cap and does that work.. then when radiation will start.

    At this point, I just don't want anymore surprises and get my treatment going. I want the chemo over before my son's wedding in september.



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  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited January 2019

    Hi Justme,

    I too went from a general hospital (small town)to a cancer centre (in Toronto) for a second opinion. They seemed so much more organized and understanding. They also seemed leary of going with the information supplied by my first hospital. They redid the mammogram and the ultrasound and had their own people read them. It seemed that everyone worked together to achieve the same goal. You will probably notice a big difference at the Cancer Centre. You say that you don’t want any surprises but you will probably be pleasantly surprised at how well you will be treated and how they include you in everything, making sure you understand what is going on. Best to not dwell too much on the confusion and just look forward to your upcoming appointments. It will be like a new start!

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    it is hard not to worry about everything. Try so hard to think about what the doctor told me. I am trying to work on that part.

    And I know I have to stop worrying about the past and just look forward to this new appointment. Because from what I heard Sloan is awesome.

    I just don't want to hear something bad again. Meaning something worse in my diagnosis then what this doctor told me.


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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    We understand it’s virtually impossible not to worry. We have all been right where you are. No one wanted the other shoe to drop and the DX is worse than first thought. Try not to imagine the worst.

    It’s so important too thatyou have confidence in your medical team and facility. I went with the cancer clinic in town with the best reputation and staff. I also chose a BS not a regular surgeon. He was one of the 2 best in town.

    Nothing is definite for you yet so I’m sure that adds to your angst. Mine was defined from the getgo so I just went through the motions. I’m 7 years out last August.

    Ask your doctors questions if you have them and make them explain. All that medical rhetoric is confusing. It’s their job to put you at ease and you need to feel confident with their decisions. It’s your life not theirs.

    I don’t think the fear factor ever goes away because it comes with the territory but time does help.

    Keep the faith and keep us posted.

    Diane


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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    Well, I just have to hope that from what the doc told me is correct and not more surprises. Just comes down to trust issues with me right now.

    My main concern is the 5 positive nodes that were removed, hope the doc was correct where she did not feel anymore, possible axillary node removal, and the fear that cells have gone beyond the lymph nodes.

    Question, how to you work through those fear moments????

    I am realizing this is going to be a long road but with this group and others I have talk to, I know I will get through it.




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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited January 2019
    How to get through the fear moments? Whatever it takes: going for a walk, Ativan, binge watching Netflix, going to a counselor, EMDR (a technique my counselor used that involves binormal beats), meditation. Reading on here about people with a similar diagnosis as you, surviving and thriving. Also, deep breathing, magnesium, and vit. D helped me. You will get through this, but you need to see what works for you to calm yourself down.

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    Found some mediation and relax breathing. Tomorrow, I am going to my primary doctor just to talk to her and see if she can explain some of this to me.

    I am still confused about my sentinel nodes were positive which were removed, the chances of having axillary nodes removed, and if I have more positive nodes does it automatically mean it spread through my body. If she can give me a little piece of mind and guidance for my upcoming appointment with an oncologist that will be helpful. and maybe something to help me sleep, but not Xanax, that did not agree with me at all huge side effects.

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  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited January 2019

    Your lymph nodes’ job is to catch and kill disease. They are the most important part of your immune system. Kind of like filters that prevent spread of disease. Yes, hopefully nothing got past the lymph nodes. Just because you had positive nodes, it doesn’t mean that the cancer cells got past the nodes. There’s a lot that you can do to improve the immune system like exercise and heathy eating. It will really help emotionally too. You sound more relaxed compared to your earlier messages so congrats for that!! Good luck talking to your Dr. tomorrow!

    Lori

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    I have been trying mediation and found good ones for mediation to sleep which I tried last night. Can't believe that I actually fell asleep and did not wake up that often at night. Found ones for anxiety and overthinking....

    Been eating healthier and the biggest change was my wine. I love my wine, but down to having some over the weekend. Someone told me, change one thing at a time, try not to change everything at once that will also cause anxiety...

    Thanks for some insight on lymph nodes. Guess I have to understand how that system works.

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    Ok, thanks to all for helping to get through this. I know it just started.

    I am finally going to meet my oncologist tomorrow and just need to know what to expect and what questions should I ask.. I never heard anything from my other doc, it is whatever. I need to focus on my treatment and getting better.

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  • dtad
    dtad Member Posts: 2,323
    edited January 2019

    justme1964...just for clarification I would like to add that you do not have to go to a cancer center. IMO it's important to be treated at a major university teaching hospital rather than a small community hospital. At the very least get a second opinion at one. Good luck with your journey and please keep us posted.

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    i know I can stay where i am at, but there is a huge trust issue and even at my first appointment.. when I mentioned I will get a second opinion at the location I am going.. I was told that this place, new one, has better research and treatment then what they offer and was told that if I did originally go for a second opinion that the new place would want me to go there for treatment instead of using them.

    Hey don't care, I want the best of the best and I heard Sloan Memorial is the best in my area. Plus, seriously, I have not heard a word from my current doc for almost two weeks.


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    Good luck with your appointment tomorrow Just me!

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    Went for my second opinion at Sloan and totally loved the place, people and my doctor.

    the doc confirmed what the other doctor said, really explained the clinical, pathological, prognostic, and the new staging. so as of now, my prognostic 1b.

    she scheduled me for a PET scan... she feels that there is a low percentage that it is can be worse, but no guarantees.. the reason for the PET to rule anything out and if there is something there they can treat me the correct way. I am not going to worry, well, try not to worry myself about the outcome of the PET because it is what it is and if they find something they can treat it. She told me and my sisters that they are coming out with new treatments all the time.

    I do feel better not so freaked out and I can't believe how fast they moved on getting everything scheduled. PET next week then follow up next Friday... Of course, my first thought was OMG they think something is bad and what to get me in and my sister told me no it is how thing should have been done in the first place and the doc wants to get me into treatment as soon as possible.

    So, once the scan test comes back, she will give me a treatment plan.. starting with chemo first then taking a look at the nodes. She said doing it this way will take out what is needed.

    Asked about the cold cap and she said it might work 30%, hey, I am willing to try it and will be going wig shopping.

    Feel so go with making my choice to go to this place. What a difference from going to a hospital setting to this..

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  • Mncteach
    Mncteach Member Posts: 274
    edited January 2019

    Glad to hear you clicked with the doctor and the setting. It is amazing what a difference it can make!

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  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited January 2019

    I’m glad you are in a better frame of mind now, justme! The less stress, the better!! I’m glad things are moving at the pace you are comfortable with as well, and that you were better informed about everything. Keep us updated.

    Lori

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    ok been doing pretty good with the relaxing and focused..

    Not sure if I should be worried about some pain on the opposite side of the lumpectomy surgery, lower rib Area? Of course, been laying on that side since surgery as well as yesterday first time picking up grandbaby. Advil and heating pad seems to settle it down...

    Am going for pet scan on Tuesday, just hoping I am over thinking,

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    Well, tomorrow is the day I find the results of my PET Scan. So many mixed feelings, from scared, nervous, etc.

    Trying not to have my thoughts all over the place. Only thing I am nervous is because of the 5 positive nodes.



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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    Of course you are scared. We understand completely but keep in mind whatever they find it’s treatable.

    Keep the faith and keep us posted.

    Diane

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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited January 2019

    I am trying to keep as calm as I can and keep remembering what everyone is telling me especially the doctor. a small percentage it is anywhere else. Need to stop listening to my head on the thoughts where it keeps going..

    .


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  • Onlyme64
    Onlyme64 Member Posts: 71
    edited February 2019

    Ok got PET Results. Of course the doc said I am complicated.. Almost passed out.. but she told me good news, they did not find anything except very small spot on my spine. they did find some hernia disks and the spot just above it.. radiologist did not want to say the spot was part of the hernia disk, the doc said she is not sure what it is and could be nothing... I am not freaking because the doc said if it is a cancer spot then chemo and direct radiation will take care of that area.. yeah, they did find two more positive nodes... again not freaking.. the doc said something that finally made me feel so much better, well a few things, before she went into too much detail she said she had a treatment plan already for me, just need to biopsy that one spot, and this is curable.

    So, plan another biopsy, chemo for 16 weeks, see if the chemo reduced the nodes, the possible node removal, then radiation. Man, when my friend told me that she knew someone that it took her one year of treatment and she is better, I was like no way.. well here I am about one year of treatment.

    So, need to find the best wigs and push through this...

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2019

    So glad you feel at peace and ready to go with the plan, and glad to hear that it's all curable!

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  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2019

    Idk why doctors say curable because it isn’t. Manageable and treatable.

    Diane

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