Biopsy today after 13 years NED help!

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hey guys:

    Thanks for that info. I had not heard of an oncotype until I was on here second time.

    I do have time I guess to figure out if chemo is needed or not. I will ask the oncologist what are the pros and cons. I have only spoken with the surgeon so far.

    Waiting, waiting, waiting.......

    wallan

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  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2017

    wallen, hope you get as information as you can on your new primary. Keep in mind you weigh the risks in deciding treatment. I am sure you know that having been there once. I just got off the phone with a SIL she is dealing with how to proceed with her treatment.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2017

    wallan my Dr said because some micro cells in one of the nodes I needed chemo so no on co type for me.

    First time around I also didn't hear or knew anything about oncotype.

    My genetic testing was negative.

    Thinking of you 💙

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hey guys:

    You guys are the best! I had the pre-op stuff today for the SNB next week. It brought back memories of the surgeries from the first time.

    I was never afraid of surgery before, but I am nervous this time for some reason. Then again, my whole anxiety senses are over active, so maybe its just over active nervous system.

    By the way, the nurse at the hospital said the dye they inject for the SNB can turn your skin a funny color. She told me that I may look very ill and it will be alarming/shocking to my family. Did any of you have this?


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  • brigid_TO
    brigid_TO Member Posts: 75
    edited February 2017

    Hi wallan I am in Ontario and they send for the Oncotype here. They need to get permission from OHIP (Ontario Health Insurance Program) for payment for an out of Country test but I think it was just some additional paperwork with a few days turn around.

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hi brigid TO:

    Thanks so much. Did you have to ask for them to do the Oncotype or did they just do it?

    wallan

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  • brigid_TO
    brigid_TO Member Posts: 75
    edited February 2017

    hi wallan I asked for it but they didn't react -just said ok. It was the breast surgeon that ordered it.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2017

    hi wallan...I never heard change of skin color or anything you mentioned above.

    I had the procedure twice and nothing like that happened.

    Sending hugs 💜

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hey guys:

    Thanks. I am going to press my breast surgeon to order the oncotype test if I am node negative.

    And thanks for the heads up on the dye. I thought it was odd when the nurse told me about the color of the skin. I even google it and there is no mention of this side effect. I will let you know if it happens. Maybe I will be a giant Smurf. LOL

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  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2017

    wallen, the only thing i noticed about the dye was blue pee.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2017

    Wallan- if you need chemo ask them to do the chemo sensitivity test which tells you which chemos will work on your cancer. After 2 rounds of A/C doc stopped it because it was not going to be a benefit. The test did show that Taxol and several others would. This should be done for everyone. Who wants to go through a chemo that isn't going to help.

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  • Numb
    Numb Member Posts: 432
    edited February 2017

    Wallan - I was told that my face would look very pale after the op and be prepared for that, but I wasn't looking in the mirror at myself until the next day and by then I didn't see anything different. I had no visitors after the op on the day because I was operated on at 6 p.m.and was not back to the ward until 10.00 p.m.

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  • Ridley
    Ridley Member Posts: 634
    edited February 2017

    Wallen, my Mom did look like a smurf after surgery with the SNB. The dye didn't impact me that way. I'm also in Ontario and had the oncotype test done. My oncologist ordered it.

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  • Lisey
    Lisey Member Posts: 1,053
    edited February 2017

    I got the Mammaprint as a second opinion. It normally bills the insurance around $9000 for both the Mammaprint and Blueprint. However, because they are still in the early phase of trying to market share - competing with the Oncotype, they have a policy that if your insurance declines paying it, they will ONLY CHARGE PATIENTS $500 max. I got an EOB from my insurance declining the mammaprint (since they paid for the Oncotype) and the amount shown was $9K. I called Agendia (the makers of mammaprint) immediately and they were so nice and told me to just disregard the EOB and they would go through several appeals with my insurance and in the end I'd only pay $500. They sent that to me in writing. I highly suggest you call Agendia directly.

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2017

    Hi, Wallan. I was checking in for news on you. It sounds like the MRI news is pretty good. I thought that radiologist may have been out of line with what was said. I hate when they do that! I also have PTSD after treatment. There is a physical anxiety that happens that is so weird because I've never had that in my life, and have had plenty of medical treatments, lbs, etc. But one thing I wanted to mention is cancer centers may be totally different than 13 years ago. I hope yours is more compassionate this time around.

    Overall it sounds like you have pretty good news. Even if it is a recurrence, to have gone 13 years is an advantage over a shorter time period. Still thinking of you!

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Thanks TwoHobbies:

    Your words are kind. It is encouraging that the MRI showed early stage and even if it turns out to be a recurrance, 13 years NED is good. I know all this. I wish it made me feel more grounded though.

    I am just figuring out I probably do have PTSD from last time. I mean, when the radiologist freaked me out, I immediately went to there is no way I am going back to that treatment centre. Which caught me off guard because I didn't really know I felt that strongly about it. It all came flooding back and I realized how traumatized I was first time around. My anxiety is sky high. Do you get treated for PTSD?

    i wish I wasn't so devastated. It has laid me out flat! Any demands on me, and I can't seem to get it together. I am about to put in a formal leave at work. I feel guilty for not being able to cope with the stress at work and treatment. Crazy as that sounds. There was a woman who used to work at my company and she was diagnosed with BC and did work thru all treatment. Had surgery and chemo. She did have a different position than mine though. Not as high pressure or physically demanding as mine. Yet, my boss seems to remember that she worked thru it all and has tried to reassure me not to take a formal leave and to wait for the shock to wear off and then see how I feel. He said I may want to work to distract myself. he says that is what this woman did and was fine. He says everyone will help me out. But I can't see it. He doesn't know I had BC before. I know the deal. I know what treatment entails. And my position is very stressful. I wish I could just retire. I can't though financially and I am the breadwinner.

    Man, it really sucks to have to go thru this!


    wallan


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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited February 2017

    Wallen,

    I'm so sorry you are going through this. I know it's a bit of a cliche but I do understand a lot of what you are going through. I also had many years cancer free after an original diagnosis in 2001. It took time but I went on with my life and eventually put BC behind me, planning for the future again. Now,the rug has been pulled from under me and I am struggling to find a new normal.

    Don't beat yourself up, comparing yourself to others. Each person's situation is so individual. I also worked through my treatment during the first diagnosis as I had flexibility on the days I needed it (and I was a lot younger!). But this time, I decided to go on sick leave, at least for the time being. I do feel a bit of guilt on the days when I don't feel that bad but recognize that my job is demanding and worry that when push comes to shove and we are faced with our typically high work load and tight timelines I will not be cut any slack. Having said that, my work is a big part of me and, after only a couple of weeks off, I am already considering how I might ease myself back into work, perhaps on a part time basis. I am finding that a distraction would be welcome after all.

    Give yourself time, wait until you know what you are dealing with and the treatment plan going forward. Then you can decide when the time is right to go back to work. Sending you a virtual hug and hoping that the treatment is easy.

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  • Lisey
    Lisey Member Posts: 1,053
    edited February 2017

    Wallen,

    Keep in mind treatments are different now - so you may not have to go through chemo or anything else but surgery and pills. With the genetic testing of the tumor available many women who would have been treated with chemo are removed from it. It may be easier than you are imagining now. I'd give it a shot before quitting - especially since you are the breadwinner.

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hey Ladies;

    Once again you offer me so much help and support. I am so grateful to you for this. You have no idea.

    I don't think I will quit my job - just take short term disability for now. It is true that I am thinking I will feel this devastated forever and I know logically I will not. I will get back up and adjust. Give myself time and kindness is the best advice there is. I also know that I really don't know what I am dealing with fully. Preliminary studies say surgery and pills only. But I still don't know for sure and its true that in my state of mind, I am freaking myself out. Work is a big part of life for me too. A very big part. I have been laying low informally since my dx, and I do feel bored at times. I think giving up my job is tough too on me mentally. More than I expected. I also know though with the stress and expectations of my job, I can't go thru treatment and do my job. If treatment is really less gruelling, than possibly. I do need to give it time. I need to breathe. Its true that maybe after surgery and some recovery, I will want to work. Even if I am on chemo. I can't know that now.

    I am regretting now telling some people about this second dx too. I don't have extended family support really. My father passed away years ago, my mother is elderly and ill herself and lives across the country and my sisters are not close to me and they live across the country anyways. I do have my husband who is not the most nurturing person. He acts like nothing is changed and can't understand why I am so upset. I have friends who are working and have busy lives. The few of them I have told are sympathetic. A few of them, although well-meaning, say and do the stupidest things that send me into tailspins. For example, this one woman I told about my BC said to me "this is the second time you have had it. You are going to need tons of support. I hope you have people who will be there for you and help you because how are you going to get thru it again?" This left me feeling sorry for myself. I don't have family and friends who will come and hold my hand during treatment. Sigh.... My SIL said to me meaning to sound loving and supportive "I wish it was me who had BC instead of you because I am older than you and can accept dying now. I have had more life than you."... This left me feeling really shitty. She has written me off.

    When I write this out, I can see the comedy in it to I guess. I need to get a hobby or something and get my mind off it all.

    wallan

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited February 2017

    Oh Wallen.

    People are amazing. You just have to laugh. When I first went through this at 39, I was understandably concerned given my age and diagnosis. About halfway through my treatment one woman I worked with had a recurrence after 7 years and another woman died after 7 years. That became magic number. A girlfriend commented..."Well, at least they got seven more years." Gee, how great. My response was that I was hoping for a bit more time - kind of impacts my long term investment strategy...

    More recently, the respirologist who did the first thoracentesis phoned me to give me the results of the biopsy of the fluid. After letting me know it was BC, he indicated he would refer me back to the cancer agency and that they would likely put me on chemo. When I suggested they would want to run some tests first to see how far it had spread he replied "What difference does it make?" Really???

    Humans may have advanced due to our opposable thumbs. It's definitely not due to our communication skills... Sigh.

    Sending positive thoughts. Let us know once you know 'the plan'.

    Pat

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2017

    Wallen and Pat - I'm so sorry you're both going through this. I would think a second round would be quite a sucker punch. To have some of those at best uninformed and thoughtless comments is the icing on the cake.

    Wallen, I know everyone talks about how support comes out of the woodwork when you're dx, etc., and it feels extra cr*ppy when that support doesn't show up. You're not the only one to experience that, even though it probably feels like it. Don't let the lack of that mythical support make you feel any worse than you do - if you can help it.

    Sending warm support and healing thoughts to both of you. Hang in there.

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  • bevin
    bevin Member Posts: 1,902
    edited February 2017

    Wallan and Pat

    Goodness, please do not listen to folks at work, especially your boss saying you should work through this tx and surgery. That is so unprofessional. Honestly, this is time to take care of your self. Take time to focus on you and only you and your health. If you have the ability to take time paid off from work and that is what you want to do then you should do that . I hope that you put yourself first.

    Hugs

    Bevin

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hi Bevin:

    Thanks for that. I just told my boss tonight that I am putting in formal leave. He wouldn't take it before. He told me to wait until the shock wore off.. etc etc. But tonight, I told him I am definitely taking formal leave. He was not happy and is still holding me responsible for the budget for the year (which is my job). He said to sit with a colleague of mine and tell her how I am going to meet my budget while i am away. The year ends at end of September. If I return before that and the budget is not met, I will be held responsible and likely be let go or written up or something. This is very distressing and disappointing to me because before I gave the formal leave he was saying tell us what you need, we will help you etc etc but what he meant is so you meet your budget. I am now nervous about my job security. Again. Regardless, I still need to take formal leave. There is no way I can work thru the treatment. i need to let the chips fall where they may. My hubby is now upset too because I am the breadwinner.

    My day is really sucking.... sigh.... my intuition was telling me this. You really need to listen to that still small voice... it knows... LOL

    Maybe I need an employment lawyer.... .sigh...

    wallan

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2017

    OMG-Your boss has made me so mad right now! You might want to contact someone in HR to document this conversation. Not sure about laws in Canada but that is what I would do in the US. Wallan,you have to put yourself first right now. Your boss and co workers can step up or not but you will take care of your health, and thats what I would tell him.

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2017

    Ypur hubby has no right to be mad, nor does your boss. You did nothing to deserve this. You need to focus on healing now

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Thanks everyone for your support again.

    I spoke with HR today and wheels are in motion for short term disability.

    Looks like there will be a lag for payment. The company stops paying me day of surgery. The insurance needs to approve the disability claim which takes time. I need to know my stage, full treatment plan and prognosis apparently which the doctor needs to substantiate. But at least, the wheels are in motion and I do not have to work.

    There is a big question about the security of my position. Even the HR person hinted at the possibility of me being let go when I return. Not during the leave, but when I return. She said all employees are treated the same and if they underperform in the fiscal year, they are let go. She would not say for sure that will happen with me. I asked specificially. She was vague and diverted the question by saying (and I am paraphrasing here) "you may want to quit because BC will change you"

    Sigh....

    wallan


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  • bevin
    bevin Member Posts: 1,902
    edited February 2017

    Wallan, so sorry that this is how they're managing your illness and related need for short term leave. Hoping all works in the end for you. This is your health and your life. I am amazed and saddened your facing this on top of managing your illness .

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited February 2017

    Wow. I feel very naive as I would never have believed that companies would take an approach like that to anyone's illness regardless of the type. How is it 'good business' to treat a strong performer in this way.

    Wallan, I am so sorry that you need to deal with this on top of everything else. I wish there is more that I could say. Stay strong.

    Pat

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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hey ladies thanks. I am feeling relieved a bit because the Short term disability is in process. That hurdle is over and I can get on with things.

    Interestingly, the HR lady told me about the former employee who had BC and worked thru treatment and they thought or expected me to be the same.

    So I think they do not understand why I am taking leave because they are comparing me to her. I did ask the HR lady about this and she agreed that if this woman can do it so can I. She came back to work 3 days after surgery apparently and worked all thru chemo. She did have a completely different job than me though. No travel. No heavy lifting. Answer phones and do computer entry. She got alot of support and help apparently. She did end up leaving the company on her own though later on.

    I am offended and baffled a bit by their attitude. But I should not be surprised really because I have seen them let go of people who came back from a leave and everyone is surprised. And talking with colleagues before my dx as idle chitchat, it is understood that it is best not to admit you have a chronic illness because they will get rid of you. One of the women there is my age and has chest pains and is undergoing tests and she confided in me and swore me to secrecy in fear of losing her job. I thought she is paranoid maybe, anxious. A grain of truth only. Who knows? She is a top performer. One of the best actually and a mentor.

    Of course, my boss has always seemed so supportive to me and championed me. So I thought maybe things are not as they seem or it was past management who gave the negative impression. Apparently not.

    But, things are moving and I feel better about that. We shall see what will happen....

    wallan


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  • ErenTo
    ErenTo Member Posts: 343
    edited February 2017

    Wallan, I'm so sorry you're going through this again. I can't believe what your boss and HR said, it's appalling. Just because one person can work through treatment, it doesn't mean everyone else can or should.

    Not sure what industry you're in, but I don't think this is normal. Make sure you document EVERY conversation you had/have with them, same with emails. You may have a good case against them if they end up firing you. You can even go to press. Imagine the headline: "Company XYZ fires cancer patient."

    It may not, and hopefully won't, get to this point, but just mentioning it is cruel.

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