The news isn't good

13

Comments

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Dear Mischief - 

    I'm so glad everything went well and that you're pleased with the results. I'm sure you were holding your breath to see what they really felt and looked like. 

    Take it easy today. Do a little happy dance in your head!

  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2014

    Hopeful, I was in your shoes 2 years ago. I was scared, and didn't know what to expect. After meeting with my surgeon, and the MO, it was decided that in addition to the BMX, I'd have radiation. No chemo for me, which was a huge relief!

    This board is full of amazing women, who share their experiences and offer support. By the end of the year, you'll be offering help and comfort to newly diagnosed women. Take care, my thoughts are with, and please report back next week.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Andrea, thank you so much for your thoughtful message. I'm sure you remember just how much such kindnesses meant when you were at this point. At this point, if I can avoid chemo and just go with radiation and hormone therapy, I will be eternally grateful, but I'm not betting on that. 

    I will certainly update after Tuesday's consult. Thank you for caring.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Kay - You are a fount of information - thank you. Unfortunately, I had one node that was seen on both spot mamm. & US. Core biopsy shows it to be positive. It's part of the reason I think it's unlikely I'll avoid chemo and probably the reason my BS wants to dissect another 6-10 nodes during whatever surgery is indicated.

  • naiviv
    naiviv Member Posts: 535
    edited September 2014

    HOPE,

    I had 1 node show on US , It later showed in MRI and PET SCAN.

    I was told if no node showed they would have done a sentinel node biopsy. If the sentinel node was positive they would take out an area around it, usually removing 6-10 nodes. If the sentinel was negative, no more were removed,

    Since they already knew I had one node positive they proceed with ALND. They take the upper level of nodes. My total take was 14. I was lucky I had no lymph or vascular invasion.  There are new staging guidelines for nodes. Isolated tumor cells, and not really considered a metatisis for purposes of stats re recurrences (I forget how many cells) .  Micromet is up to 2mm and 200 cell . Bigger than 2mm and is considered a metastisis to node.

    My one node was a micromet and I became the new stage 1B instead of a 2A. My node and breast tumors had different Her2 results. That is how I found out about testing both.

    V

  • Mischief46
    Mischief46 Member Posts: 217
    edited September 2014

    Hi Hopeful!  Wishing you all the luck with your MRI today!  

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Thanks for the great details, Vivian. I really appreciate your hard-earned insights on this issue.

    I've just taken a closer look at the path report on the node, which describes it as "metastatic carcinoma spanning 7mm in greatest dimension as sampled, involving lymph node tissue. 

    Clearly, I'm going to need to have an in-depth discussion with BS. I realize that I am "lucky" in that she's talking about removing "only" 6-10 nodes and she says all her slender patients do well in terms of avoiding LE, but the procedure does create yet another area that has to heal and that involves plenty of other side effects. If I could avoid any of that it would be a relief. 

    Did you have any issues w/ LE?

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Thanks, Mischief! I'm debating whether to take a tiny bit of Ativan before hand just to deal with the boredom but since I can't drink anything for 2 hours before hand, that may be pointless.

    Other than the boredom (and staying still) and the possible results, I'm feeling o.k. about it. Thanks so much for thinking of me!

    How are you doing??

  • Mischief46
    Mischief46 Member Posts: 217
    edited September 2014

    hopeful, I had 3 MRIs and I don't remember the no drink rule...drink a lot after if they use the dye and get it out of your system.  I found it loud and you are right, it is kind of boring.   

    I am doing well thank you.  Pain is at a minimum so I am thankful.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Hi, Mischief - Glad to hear that the pain is minimal; that's probably a big relief. I hope you feel more like yourself every day! 

    I checked with the MRI center and they said the 2-hour rule was so pts. wouldn't get uncomfortable needing to use the restroom during the procedure! Taking a pill with water is totally o.k. 

    It's been a long week - I may not need anything to drift off - a bit of music and a pair of earplugs might be enough.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    No worries, Kay. I really appreciate ALL the info and plan to explore all my options from every angle. If there's even ONE obnoxious aspect of this that I can avoid, I want to know about it and go for it! 

    The MRI center did tell me it would be o.k. to take enough water to swallow a pill but in the end I didn't take any. I was so wrung out by late afternoon that I figured just lying down and zoning out would be enough. The MRI was fine. Like you, I hope the results are thoroughly boring. Thank you for your warm wishes, advice and support. 

    Have a good weekend.

  • Beatmon
    Beatmon Member Posts: 1,562
    edited September 2014

    Hopeful: do something fun this weekend!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Beatmon - I WISH!!! 

    Unfortunately, my husband (who is truly a super star) and I are putting on a big party for Dad's 90th birthday next weekend (thank God we decided against holding it in our home!) so I have a ton of picky little details to finish off and errands to run in projected 90 degree heat. (Can you hear me whining all the way down there in OK?). Plus my sister's flying in for a couple of days for the party so I need to 'redd up the guestroom' as a friend of mine used to put it, and shop for whatever it is that she 'can' eat these days. Oh, and I need to catch up on some of the work I've not been able to focus well on this week. Bleah. 

    I'm tired of heat, tired of brothers who never help out, tired of the lack of rain. I know, it could be a LOT worse, but it's my pity party! :) 

    I am REALLY looking forward to the party - it will be a lot of fun - and I'm looking forward to the following weekend and just letting down my hair and taking care of some of my/our needs again. 

    I will postpone following your advice until next week end and I will think of you gratefully then. In the meantime, I hope you're doing well and that you are following your own advice and having some fun.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    On the other hand, there's a slim chance we may see the Aurora Borealis this weekend, which would thrill me no end, so there is that to look forward to!

  • Hortense
    Hortense Member Posts: 982
    edited September 2014

    I just spotted this thread and want to add that you ought to request an oncotype test. It will tell you if you will benefit from chemo or can skip it.

    I went to Memorial Sloan Kettering in NYC for surgery and their policy is to only remove two sentinel nodes. Their studies have shown that removing more did not change the statistics of patient's survival, but could lead to Lymphedema. I had two removed and both had micromets in them, which was a bummer. My oncotest score suggested that I would benefit from chemo, so I had it, but I did opt to use cold caps which allowed me to keep most of my hair. I really did not want to go bald, especially after I learned that about 4-5% of people do not get their hair back properly after chemotherapy. Doctors generally do not tell you that.

    There definitely are oncologists who specialize in breast cancers, just as there are surgeons who only specialize in breast cancers, I had both. You might have to be in a large city or go to a large cancer center to access them. I live about two hours outside of NYC and went there for all of my doctors, tests and treatments. I stayed overnight at hotels with my husband before surgery and chemo treatments, otherwise I would just go in for the day. The effort was worth it for me.

    Enjoy your father's 90th birthday party. My mother absolutely adored her's. It was the best gift we could ever have given her. I hope your father enjoys his as much.

    That said, you have to start thinking about yourself. You are about to go through an intense period which will take a lot out of you. Hand duties off to as many other people as you can - and don't feel bad about it. Accept help if it is offered so that you can rest and heal, such as help with meals, cleaning, errands, or at work, etc. 

    Be firm about your brothers and other family members having to step up to care for their father, if that is what you will need help with. It is fair to play the cancer card, because you actually have it. You can not allow yourself to get run down during treatment, or afterwards. 

    Stock up big time on basics while you feel well, so that when you are tired or not feeling well you will not have to worry about having enough toilet paper, rice or dog food in the house. Doing so made life much easier on my husband and on me over the months I was in treatment. That way he or I could quickly pick up fresh essentials at the market - milk, veggies, meat - without having to do a heavy shopping.

    Good luck in whatever you decide to do!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Hi, Hortense - thanks for sharing a ton of good advice on a variety of issues; I really appreciate it.

    Fortunately, my dad's still in great shape and lives independently so no care is required from us. We're very fortunate to have his example of how to live well into old age. I'm really ticked that this dx and the ensuing treatment may impinge on my intent to do so. 

    My brothers are hopeless - truly. One of them has already survived a very nasty cancer, and tends to be very prickly by nature, so I just stay away from him as much as possible. 

    I will have the Oncotype testing - it will be one of the final determining factors in treatment, of course. There's a lot more to get through before then, however. So many questions and the answers come with agonizing slowness....

    Back to housecleaning already in progress :) At least the cake is ordered and the errands are done. Hope you're enjoying your weekend. Thanks again for sharing your insights.

  • fire-n-ice
    fire-n-ice Member Posts: 24
    edited September 2014

    We are a weary group @ times, aren't we? The major thing I've taken from this discussion is something Beatmon said earlier, sorry sweety, just wanted you to know what you said was so on target w/ my inner turmoil :

    "You will still be anxious after tomorrow, but believe all of us, once there is a plan of some type in place, it gives you a type of peace that you are doing what you can to get rid of the beast!" Beatmon.

    Thank you for that as I have already found that out personally. It's the "NOT KNOWING," that drains us and accounts for 100s of restless nights. I know what my plan is just can't seem to get to the first of it: chemo. Am I nuts or what, wanting that started? No, I'm not, I just want to get on with my life as normally as possible and in that I'm a real "family" member. We all do and that's not asking a lot, right?

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Fire-n-ice - I'll think of you when I wake up and can't go back to sleep. I hope you can get the chemo started soon and get that over with. 

    It's amazing to me how long this whole process is and I don't think many people have a clue what a roller coaster it is until we actually know what our treatment plan will be. It IS wearing and wearying and draining and debilitating. Hang in there, and best of luck with your treatment.

  • Hortense
    Hortense Member Posts: 982
    edited September 2014

    But once you have a plan and start, it goes fast. Just take aim at what needs to be done, take lots of notes, educate yourself, check carefully with your insurance to be sure everything is covered, switch doctors if you have to or want to, and most of all be sure people are listening to you. 

    I switched doctors and hospitals after surgery just to have doctors that cared how I felt. I had a fabulous surgeon at a leading cancer hospital and still go back for check ups with her, but I did not find the same level of caring or listening in the oncologists there, so voted with my feet and went elsewhere - actually across the street to another renown hospital's Breast Center. It was an excellent decision. I was given the same chemo, but allowed to use cold caps and to ice my fingers and toes toward off problems because the team understood my concerns. I was treated like a person, not just another cancer patient on an assembly line. I went back to hospital one for radiation because of its convenience, but still go for check ups with the second hospital's Breast Center. Sounds complicated, but it is not.

    I have learned that we are not just patients, we are also consumers. Cancer treatment is BIG business, and very profitable.

    One more thing, look on the bright side. You will be getting very good treatment, and most likely you will be fine afterwards and for a long time to come. Cancer is not a death sentence anymore and a positive attitude is strong medicine that will help carry you through treatment. 

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Thanks, Hortense - your input is very helpful. 

    I know that cancer is not a death sentence but it feels as though treatment chews up a year of one's life and spits one out at the end, with all sorts of potential short and long-term effects that can really impact the remainder of one's life. It's not like a fracture that pretty much heals up and goes away, with just the occasional twinge to remind one of where the break was. It's the destructive quality of the treatment that I'm really, deeply concerned about. I don't want to just 'survive' this - I want to look forward to a normal, healthy, vigorous life again and so far nothing I've read is very convincing. Maybe I'll see a different aspect of this after I have a chance to meet with the support group at the Breast Center. I hope so. 

    By the way, I've read some of your posts regarding cold caps and wondered if there was anything similar to protect eyebrows and eyelashes? 

    I'm curious, too, about icing fingers and toes - if I have to do chemo I'll definitely have to follow up with that. Right now, sufficient unto the day is the evil thereof and all that. 

    PS - I don't want anyone to think that I'm being unduly pessimistic or defeatist. It's just that so far few of the reassurances I've received have been borne out by test results. I figure I might as well know the worst that could happen and make informed decisions based on that rather than being let down repeatedly. 

    Thanks again for all your info and insight, Hortense. You know both how valuable it is and what it means at this point.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Kay - bless you. I REALLY needed to hear that.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Today's new adventures - a bone scan and CT scan. Nothing to eat or drink after 7AM so I watched the sunrise as I enjoyed my morning quota of tea between 6:15 and 7. :)

  • Mischief46
    Mischief46 Member Posts: 217
    edited September 2014

    thinking of you today Hopeful, as you seek more answers!  Good luck on your scans!

  • Beatmon
    Beatmon Member Posts: 1,562
    edited September 2014

    hopeful: in your pocket!

  • naiviv
    naiviv Member Posts: 535
    edited September 2014

    Hopeful,

    There and here for you.

    Let us know your home, when you can.

    Vivian

  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2014

    Got my fingers crossed for you, Hopeful!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Thanks so much, Beatmon.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Thanks so much, Andrea. Hope you're coming along well with your implants?

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Got some good news! My BS called between patients to let me know that the results of my MRI last Friday looked good - the tumour's localized, nothing else is seen on either breast. The one lymph node still shows as enlarged (and we already knew it's malignant, so no surprise there).  Nothing else is suspicious. 

    The CT scan showed 'no convincing evidence of metastasis' - I need to discuss exactly what that means, but I'll take it as good until told otherwise. Bone scan results weren't available yet. 

    This is a relief. Knowing all this gives me time to process the info before our meeting tomorrow  a.m. as well as relieving a lot of anxiety. 

    Thanks to everyone who 'had me in their pocket' these past few days. I sincerely hope others are getting some good news these next few days, too.

  • Mischief46
    Mischief46 Member Posts: 217
    edited September 2014

    That is great Hopeful!!  So glad you got some good news!

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