I'm Baaaack

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justjudie
justjudie Member Posts: 3,397
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hello.  I have just been dx'd with meastatic breast cancer.  I have been enjoying 9 !/2 years of good health and thought I was a breast cancer survivor for sure.  Well, I was, but now I certainly am not.  Got a small bump on the top of my head, on my scalp under my hair. After a couple months and it did not go away I went to a dermotologist who took one look and sent me to regular surgeon.  That Dr removed & biopsied it...and the path report shows it is mets breast cancer.  

Thus I returned to my oncologist who ordered various test...the pet scan shows cancer in about 5 location in the bones and there is a "spot" on the liver.  He wanted a biopsy of that,but due to te location on the liver the radiologist would not do it as it would be risky or whatever.

Sooo now I guess I'll see the onc sometime soon to review all the tests, blood work etc and he can tell me just what poisons are coming.  Sigh....I guess I should not feel so sorry for myself.  I did have 9 1/2 great years of recovery for which I am profoundly grateful.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

      Don't make it sound like this is the end....you may think it is the end right now, but it is not.   You were a survivor and still are.  When they discovered my mets 12 yrs ago, I had a spot on my liver as well as areas in the bone and lung and I am still here. I called all my friends together and told them what the odds were of survival with Stage lV and thought I would be lucky if I made it five year.  Today I am still here and working full time.  WIsh I could say I was cancer free, but I will never be able to say that,  however I am living with cancer and doing a very good job of it.  You are still in a state of shock as is to be expected, you thought all this crap was behind you.  Once you get a treatment plan figured out, I think you will feel a lot better.  The fear of the unknown and being in limbo is a scary place to be. You are no different that you were a month ago....the only difference is that now you know and now you can start dealing with the problem.  I am saying my prayers for you, Judie.    Marybe

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Wow, Marybe....your note certainly cheered me up!  12 years!  Good for you!  That is amazing.  I really didn't know it even COULD go that long.  I am really encouraged.  None of us know how things will go, but if you have done 12...well, maybe I will too!! I really do feel better.  Thank you for telling me.

    I start chemo tomorrow morning & the doctor is going to go over all of it tomorrow so we shall see,  You are right that the period of time until you are DOING something is really worse.  While I'm not looking forward to chemo, it definitely does feel good to be doing something to fight back.  Thanks again and you are in my prayers too, Marybe!   

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

      I will be praying for you Judie.  What chemo are you doing?  A dear friend of mine had her very first treatment today and I talked to her right after and she is just so happy to be getting this started...they told her two weeks on her hair and she was stopping at the pharmacy on the way home to get anti-nausea meds.  Hers isn't like mine....I am ductal, she is lobular, but still I think she takes comfort in the fact I have been dealing with this for a long time and am actually doing very well.  I feel confident you will also.  There is one woman who has posted on here and she has been Stage lV for 17 years...that should really cheer you up!!  

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Thanks, Mary..it does indeed cheer me up to hear all this.  And you look great in your picture with your little dog too! Today they are going to give me Aredia.  I guess its a bone mets drug.  How have you done with this one?  I was also ductal...was originally diagnosed 12/2000.  Had 9 out of 18 nodes positive, so that was a considerable amount of nodes.  I had a lumpectomy and chemo & rads, and as I said, I was good for 9 1/2 years.  You certainly started off with a bang, Marybe. And still going after 12 years too.  That is wonderful. I hope your good friend will do well too.  God bless her & you. 

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  • Padiddle
    Padiddle Member Posts: 853
    edited April 2010

    Hello Judie:  Just wanted to say hello and share that I too had 9 years of remission and then metastatic disease diagnosed in October 2009.  I was 41 years old when I was first diagnosed and now I am 50.  Invasive ductal.  No family history.  No chemo for me though.  Had radiation for bone mets, oophorectomy, FEMARA and started Zometa yesterday.  It sure is a drag to have it come back.  It's so much to process.  I try to process little bits at a time to not be so overwhelmed with it all.  Sending you my best.  Jean

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

    Judie....oh, I didn't start out with a bang....I was barely a stage, my first go round in 1990, had a mastectomy and none of the 19 nodes they tested were positive so they pretty much told me it was over....didn't do tamoxifen because it was still being tested and they didn't feel chemo necessary.  I did aredia after being diagnosed with bone mets and stayed on it until my insurance approved zometa. I got the zometa monthly until just this year when I asked my onco if I could decrease it to every other month. 

    My friend had her lst chemo yesteday and was going for a shot of neulastin (sp?) today.  She is taking some meds for nausea and so far feels good, just a little tired.  She's doing adriamycin/cytoxin and will get taxol the last four treatments. She's only 46. 

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Hello Jean,  

    Thank you for responding to my note.  I DO know what you mean about processing it all just a litttle at a time.  I feel thats the best way for me too, just deal with it all one step at a time.  It is overwhelming otherwise.  You were also free of it for 9 years too.  I guess we were lucky it took this rotten disease all these years to return.  You are so young for this too, Honey.  Hope we can beat it back again, Jean.  The other lady who responded to my note, Mary, has been fighting mets for 12 years!!  Maybe we can be like her.  You are in my thoughts, Jean. I wish you the best.  

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Hi Mary,

    You poor thing...with such a favorable iagnosis at the outset I am sure you never expected to have to deal with it again.  But you are certainly dealing with it well, Mary.  I had an infusion of Aredia early this week.  That was fine...no problem whatsoever, but then I guess that is just to support the bone and doesn't kill the cancer, if I understood correctly.  What is Zometa?  Is that also for bone mets?  Tomorrow I have a liver biopsy done on an outpatient basis at the local hospital.  They had it scheduled a week ago but the first time, the radiologist would not do it because of where it is in the liver.  Right at the top of a lobe or something and she felt it would be dangerous to try and do.  Then my oncologist found a "Liver Interventionalist" (whatever that is)  who says she CAN do it, so lets hope she can. Anyway, I will be mercifully drugged enough not to know what they are doing.  I am glad about that.  Then the oncologist will have much better info I guess to assess what the treatment should be re: the chemo drugs to use.  

    You know, I didn't miss all this medical drama one bit the past 9 years!  Oh well...it is what it is

    I think of you and your newly diagnosed friend too, Mary.  I hope it will not be too hard on her.  Sounds like she did pretty well for her first treatment.  I recall that the drug Zofran really helped me with nausea.  She might want to ask for that if the nausea is bad.   

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  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2010

    Judie -

    Had a scare myself two weeks ago, but thankfully, dodged the bullet and it was just a small seroma in my cancer breast.  Just want you to know that I wish you an easy journey and nothing but a great outcome.  You are in my thoughts.  This disease is so unfair and just never gives us the time to ever think we are safe - no matter what our stage at initial diagnose.  Stay strong!

    Hugs,

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

      Zometa is pretty much the same thing as aredia, but my onco switched me because the time to administer it is much less...I get the zometa in 15 mins.  I will say my prayers that the liver biopsy isn't too rough, Judie.

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Hi Mary,

    The liver biopsy was not bad at all.  I expected worse since the first radiologist didn't want to even do it.  But it really was not that bad at all, and everything went fine.  I guess it will be a couple days until my onc has results, and I'm sure I'll hear from him them re: what chemo, when and how often.  I am trying to enjoy these last few days poisonless...lol.

    How are you doing? And how is your friend? 

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Hi Linda,

    Thanks for your encouraging words and I am SO glad you were able to dodge the bullet! With those beautiful kids in your picture, you really must stay well!

    I have to see about geting a pic of myself on here like so many ladies have.  Its nice to see who you are talking to.  I am not too great on the computer, so guess I'll have to get my husband on this, or better yet, my granddaughter!  Seems like the younger they are, the better they are with computers!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2010

    Judie -

    Lol!  It was my grand-daughter (in the pic) that put it up, not me!  I'd still be trying to figure it out.  Keeping you in my thoughts - hang in there - we are all here for you.

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

      Judie,  Glad the biopsy was not bad..just the thought of them punching into my liver sort of gives me the willies.  You would think I would be immune to all this stuff, but I still close my eyes when they access my port or try to hit a vein.  It's not that it actually hurts, it is just seeing them do it.  I think in order to add a pic you go to your preferences and you can add an avatar there.  Or you go to your profile I forget, but it can't be too difficult or I never would have been able to do it.  The part I cannot do in spite of many people being kind enough to give me instructions, is add regular pictures for viewing the way some of the ladies do with the stages their hair went through, vacation pics, things like that.  Thanks for asking about my friend...she is GREAT....well, not really great, but they finally called in an anti-nausea med for her that worked Friday AM and by afternoon she was up doing things and her husband said he could not believe the change.  Sat was the lst communion and the mass was at 4:30 and she looked beautiful.  I don't know if the chemo has given her a golden glow, but her coloring looked beautiful.  My friends and I stayed at the house and got the food ready and when they all came back from the church, she actually enjoyed the party....was eating and laughing with people, helped Sam read his cards and open gifts and even had a beer.  This week she is still feeling good and I am encouraging her to get her hair cut since it is really pretty long and should start falling out next week.  We are all going out to eat while she is still feeling good.  I don't know if this will be a pattern, feeling like crap the first part of the week after treatments or if now that she has an anti-nausea med that works, she will do Ok for the duration.   I hope it is the latter.  And me...I am doing fine and still feel good.  Tomorrow they are going to do a CA27/29 in addition to just checking my INR and I am almost certain the numbers will be even higher than they were 6 wks ago and also they are going to schedule my scans which will tell us what is really going on.  But as I said I feel really good so am thankful for that.  Thanks so much for asking.

        Hope all you other ladies are doing well. 

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Mary,

    I am SO happy for your friend, that she was able to enjoy the First Communion party.  That is wonderful and truly what life is all about, getting to enjoy the happy milestones in our lives with those we love.

    On Monday I will be having a portacath installed. I guess that does really help save your veins, huh?  I had one last time and they recommended I do so again.  Not too sure just which day next week, but they will let me know, they will start Cytoxin and Taxotere.  Not looking forward to it, but have to get geared up because something has got to get after this cancer, thats for sure.  Its having its way with me at the moment. They gave me an Rx for the steroid drug I'm supposed to take day before, day of, and day after chemo. Yuck.  I had Adromycin (sp?) & Taxol last time...I think both with Cytoxin if I remember correctly.  But I have had all the adromycin you can safely have I guess.  Sooo its gotta be other drugs.  I'm hoping it won't be too bad. 

    Have you taken these drugs too, Mary? Here goes the hair again, huh? I hate that, but have to remember there goes some cancer cells right along with it. Hopefully.

    Judie  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

       I have had cytoxin, but it was oral so doesn't work the same as IV.  I had Abraxane which is the same family as taxotere.

        You will glad you have the portacath....it really does save the veins, plus all they have to do is stick you one time.  My veins are not only bad, they roll so I used to hate it when they would have to look for one....plus they can only use the one arm due to my mastectomy so there were even fewer to try.

       You will do just fine, Judie.  I am saying prayers for you. 

       I am having CT scan on Monday AM and will have the bone scan the following Monday so I will know how accurate my CA 27/29 is soon. 

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  • justjudie
    justjudie Member Posts: 3,397
    edited April 2010

    Hi Mary,

    Have you heard about your scan as yet?  I hope so much it was favorable.  Please let me know. You said it would tell you how accurate your CA 27/29 is. Is that your blood test for tumor markers?  I'm not too familiar with the jargon as yet, but I know I soon will be...sigh.  Anyway, I hope it is all good news, Mary.  This damn disease.

    Anyway, I had first chemo today with cytoxin and taxotere and as yet I feel nothing.  Really feel just fine!  I'm sort of amazed.  But the nurse did tell me that this is not too bad for making you sick or severely nauseated usually.  More like in two days you might feel like you have the flu...maybe run a fever. That might last a day or two, maybe 3.  But she thought that might be about it for immediate side effects.  I will be very happy if that is all it will be.  We shall see.  But as I said, I feel great right now!

    They are concerned about the neck vertebra as it has a LOT of cancer apparently so the onc wants me to get that radiated.  But he and the rad. onc have to work out how & when since I'm already doing chemo. In the meantime I am to get one of those cervical collars to wear for awhile till we see how the chemo is doing or get te rads.  I guess he is concerned it could break which is not a pleasant thought. Anyway, right now I am good and I'm grateful for that.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

      Judie, I rescheduled my CT scan which was supposed to be Monday and am having it tomorrow.  I was supposed to go to lunch with the office and thought heck, I am not going to feel like eating after drinking all that chalky crap, so I just decided to put it off since I am not anxious to get the results anyway.  What do they call that avoidance/avoidance? But tomorrow is the day. And then the bone scan is Monday.  Yes, CA 27/29 is the test for tumor markers.  My friend doing the Adriamycin/cytoxin had her 2nd treatment on Monday...she is fine that day and Tues, but on Wed. and THurs said she  has no energy at all....sort of the same schedule as you. Do you getting zometa or anything yet to strengthen your bones?

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  • justjudie
    justjudie Member Posts: 3,397
    edited May 2010

    Hi Mary,

    I have been thinking about you but somehow have not made it onto the computer for awhile! How did the scan go?  I hope it was positive news, Mary. You asked about what drug I'm getting to support the bone.  I had Aredia 4 weeks ago and am due for another infusion of that in two days.  I believe that is the drug they are using to support the bone.  Is zometa the one you have taken for this? Do you know if they are different or pretty much same thing?

    They have put off my chemo treatments for awhile.  The radiation onc thought I should start having daily rads on this neck vertebra for 4 weeks so that is what I am doing.  Its about 5 days into that now.  Once they finish that I can go back to chemo, but can't take the chemo and the rads at same time they tell me.  The radiation isn't bad, I'm sort of tired etc, but not bad.  I guess it willg et uncomfortable for the last week or so because it will affect my throat...sore throat etc.  They are getting at the vertebra by going thru the front of me.  While my head is positioned up, some still apparently hits the throat altho they try to minimize that.  So thats all the news from this front!

    Hope you and your friend are both doing well.  I do recall that adrimycin was a tough drug...I felt pretty miserable being treated with that. But it is a wonderful cancer fighter.  I wish you both the best. 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2010

    Hey Judie - saw that you were posting and just wanted to drop by and say hi and that I am thinking about you and glad to hear you are coming along! 

    Didn't know you had it in your neck vertebra.  How did they find it there, just through the scans?.  I oftentimes have pain in my cervical area but slap some bengay on it and it goes away (also am on a computer every day at work for 8 hours and then at home for at least another 2 of 3!), but one never really knows with this freaky cancer where it can pop up.   How much longer for the rads before the chemo begins again?   I wish you a speedy and uneventful journey this time around, keep me posted - I care.

    Linda

      

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

      Judie, You asked about my scans and I am sorry to report they were not good....the CT showed that the tumor in my liver increase 1 cm. in size since Dec.30, and the bone scan showed "worsening" as they put it just about everywhere.  I have new mets in the right 4th, 7th & 9th ribs and new in the left 1st and 7th.  There were new foci throughout the thoracic and lumbar spine and also it says not the entire vertebral body of L2 in involved. It is now in my rt sacrum where before it was only in my left and there are some new areas in my femur and also the areas in both of my shoulders have gotten larger.  SOOOO, it was not a very encouraging report and definitely shows that hormonal therapy is no longer the way to go for me.  I am starting on a new chemo tomorrow, navelbine, which my onco says is a gentle chemo (somehow I doubt that,but won't know until I try it)  When I asked my onco how I can have so much going on and not have pain he said because it has not gotten to that point yet and we don't want it to.  I do have an area that hurts when I press on it under my left arm and I am thinking that is a rib and will ask him tomorrow.  Believe it or not I am looking forward to starting chemo since I was shocked when I saw my bone scan with all those areas that lit up white, a lot of them new.  Now I lay in bed at night and imagine the cancer growing.  I thought things were not improving when my CA27/29, went up, but thinking and knowing are two different things.  I am not ready to give up and my onco says there are many options.

    My friend is still having a rough time with the adriamycin....she gets her treatment on Monday and is ok until Wed. and then she just seems to be wiped out for the rest of the week.  She was going to ask her onco if something could be adjusted so that she might have a little more energy.  She got her 3rd treatment this week and after four, they are going to add the taxol and she is worried about that. 

        Hope you do well with the radiation.    

        Aredia and Zometa do the same thing.  The reason he switched me to zometa as soon as my ins would approve it was the fact they can administer it in as little as 15 mins....as I recall the aredia was about 2 hours. 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2010

    Marybe -

    I am so sorry to hear the news of your scans and want you to know I pray the Navelbine is gentle on you and does a wonderful job of cleaning this up.  You are in my thoughts and prayers as well.

    Linda

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  • tedwards
    tedwards Member Posts: 11
    edited May 2010

    Hey ladies, I have not been here in a while...scared I guess. But thank you for the first posting I saw was justjudie and I'm Baaack. I am also baaack after 4 years and 11 months. November 23rd Mets to bone and pleural space. Treatment now is Chemo for at least 52 weeks...I am 1/2 way there as matter of fact on my way now for chemo. Just abraxene today, other weeks avastin and abraxene with one week a month chemo free. love to you all we all are survivors...how else do we do it? TRIPLE NEGATIVE too.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2010

    Hi Tedwards:

    Just read your post and am so sorry that you too had to come back after years of no cancer.  I too am triple neg, only 1 yr. 3 months out of diagnose, but still scared beyond belief of this diagnose.  I was caught early, Stage 1, no nodes, no vascular, but so what?  So were a lot of other ladies that went on to recur as well.  So much for their tag line of "once you hit 3 years, your chance of recurrence drops really low."  Yeah...so much for 3 years.  Will keep you in my thoughts - stay strong, kick butt and keep us posted. 

    Linda

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  • justjudie
    justjudie Member Posts: 3,397
    edited May 2010

    Ahhh Mary....I am so sorry the scan was not good.  That has to be very upsetting.  I know what you mean about looking at your Pet Scan and there are all those damn lit up places!! It seems beyond belief.  I have heard of Navilbene but don't know anyone who has had it.  I hope your onc is right that it is not heavy duty re: side effects. However, I think it is key that you said you "are not ready to give up and your oncologist says theres more options".  Good for you!  Give it no quarter, Mary.  You may have to change tactics for awhile.  I am thinking and praying for you, Mary.  

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  • justjudie
    justjudie Member Posts: 3,397
    edited May 2010

    Hi Linda & Tededwards,

    Thank you for you kind words.  I am sorry you both have to deal with all this too.  So many nice kind ladies here on this board.  Its not right, but then, what is?   Certainly not Linda stage 1, no nodes etc, and back here in just over a year.  Nor is it right for you,  Tededwards who ALMOST made it to 5 years.  I remember thinking to myself at 5 years...well, thats DONE.  I'll probably die from something else! (cheerful thought)  But we just don't know with this ugly thing.  I hate the way it just sneaks up on you. 

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  • AngieS
    AngieS Member Posts: 3
    edited June 2010

    Judie, 

    I'm so sorry to read that you are going thru this again.  I am a 4-year survivor, trip neg, no nodes, and I don't get on the forums much these days, but reading your post has me worried.  I have a bump on my scalp, it's been there about a year now, and I didn't really think anything about it, but it has gotten bigger.  Did the bump on your scalp move with your scalp?  Mine does, so I figured it's nothing to worry about.  After reading your post I'm going to get a dr appt to get it checked out.

    I hope that your treatments are going well, not too sick, and that you will have a good response to them.  There are so many wonderful, supportive people on these forums, all having gone thru or going thru this same battle with cancer.  Hang in there, my prayers are with you.

    Angie

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  • justjudie
    justjudie Member Posts: 3,397
    edited June 2010

    Hi Angie,

    Yes, do get it checked out. To tell you the truth, I can't exactly recall, but I think the bump did NOT move. It felt like it was just part of my scalp.  So you are probably right, but the only sure way to know is go have it checked.  I had no idea breast cancer could come back in such am unlikely spot...but then found out it could and it did. Good luck with your bump, Angie.  Don't be worried, just proactive. 

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