Introduce Yourself

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Tricia Keegan
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Re:Introduce Yourself - Tuesday, September 15, 2015 4:26 PM
Oh sorry to read this and hope the meds work and help you feel better. I think the synthetic wigs are better as you really don't have the energy for styling a real one during treatments, hang in there, you're doing great and hope you feel better soon!Pals
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

IKeepGoin
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Re:Introduce Yourself - Wednesday, September 16, 2015 8:24 PM

Thanks for your encouraging words, Tricia!  I'm sure in the end I'll look back and laugh.

Best regards,
Joyce

eowynshieldmaiden
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Re:Introduce Yourself - Saturday, September 19, 2015 10:08 PM
Hi...I hope no one minds, but I'm more comfortable hiding behind a nickname. Just call me Eowyn. :)

I was diagnosed with Hodgkin's lymphoma at age 15 (1988), and my treatment included (among a lot of other stuff) mantle field radiation, albeit in reduced doses. Fast forward a few decades...lots of late effects and other chronic and often serious health issues, including systemic lupus. One basal cell carcinoma in my radiation field and two suspicious places on my skin which were benign. My radiation at that age places me in a very high risk category despite little family history of BC.

So I've had mammograms for almost 20 years, regularly once I got into my 30s and they began sorting out that I needed it annually already. They wanted a breast MRI once I got into an awesome survivorship program (OMG, finally, the help I'd needed to find!)...but first time, the machine shut down 15-20 mins before the end and they couldn't get it to work again. :P 2nd place: back (spinal curvature) kept hitting the machine, couldn't get the scan, wedged in - they hurt me so much physically and emotionally I was on muscle relaxers and pain meds for weeks after, and sobbed uncontrollably for a good 30-45 mins right after. I wasn't that much of a mess after my non-sedated bone marrow biopsy in 1988. :P Third attempt went much better, but still couldn't get it. Back curvature again. :P There's one more place (out of town for me, like #3) we can try - sometimes they can fit people who have probs with #3's machine. Only #3 and #4 really seem to know what they're doing, and I've liked them. So...no bMRI yet, but I'm game for one last attempt.

What happened to bring me here is this: I was referred by my amazing and wonderful and compassionate survivor NP to a high-risk breast center, where I met another awesome NP, and where they went ahead and did my mammogram almost two months early. Last fall when I'd had it, I'd had to have a diagnostic mammo on my L breast b/c of suspicious microcalcifications. They were satisfied then it could be followed up in 6 months. Did that this past May. The radiologist said it was OK and I could return to my usual screening mammo schedule, no more mag views for now. Well...my two NPs weren't 100% satisifed; they ordered some mag views again. Guess what? Suspicious increase in microcalcifications in the L breast, clustering of them...BI-RADS 4. So I'm having a stereotactic biopsy on 9/23. 

There are a lot of complicating factors if this is BC, including my lupus, my prior cancer treatment (surgery, chemo, and radiation), t2 diabetes...but I'm just doing my homework/research (I'm a former medical librarian specializing in clinical and patient information and resources) and getting prepared to ask whatever questions I need. I welcome any advice. :)

About my nickname...you might be able to find me in some ped-onc and LTS type circles as Frodo. I've always felt like Frodo, like cancer made it so coming home wasn't, so to speaek, really coming home. I wasn't the same afterward. And while I'll always be Frodo...I thought the potential of a new battle deserved a new nickname. I'm more annoyed and irritated than anything else right now - it's like - if cancer is STUPID enough to mess with me a THIRD time, then it had better be prepared to drag its sorry behind out of here, b/c I am ready to FIGHT. So...Eowyn it is. :) Those who have read and/or viewed The Lord of the Rings films, esp The Return of the King, will know why I felt that character name fits a lady warrior well. :)

So - that's my story. :) Thank you all for letting people like me have a place to come to talk about these things. :)

-EowynShieldmaiden
Hodgkin's 1988-89 (staging lapararotomy, stage II-A w/bulky mediastinal involvement, 6 cycles ABVD chemeo, mantle XRT)
Basal cell carcinoma (2013 I think)
BC undiagnosed, stereotactic biopsy slated for 9/23, hoping for a benign report, but if it's there I want to KNOW NOW, not later!

Rena
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Re:Introduce Yourself - Sunday, September 20, 2015 10:19 AM
Hello Eowyn, and welcome! After what you've been through, you can have any nickname you want! All I can say is that I hope your biopsy comes back negative. It's terrible that the cure can make you sick, but with chemotherapy and radiation, so many people end up with chronic problems that have nothing to do with cancer directly. You are an informed patient, and it sounds as though you have no problem being your own advocate. I'm glad that you found two NPs who are so good and so caring and who are looking out for you. I wish you the best, and please let us know how the biopsy goes. I will think good thoughts for you. 
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Tricia Keegan
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Re:Introduce Yourself - Sunday, September 20, 2015 2:21 PM
Hi Eowyn and welcome,

I can only echo Rena's words, you've been through so much already that you're obviously a strong person who likes to be educated on this disease and I'm so pleased you've done so well at doing that in the past.  I'll be keeping everything crossed for you and hoping for a B9 result, please keep us posted and good luck!Pals
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Notes88
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Re:Introduce Yourself - Sunday, September 20, 2015 3:25 PM
Hello, everyone, my name is Kathy and I had a lumpectomy for invasive DCIS 2 weeks ago. My oncology team recommended sending my pathology report on for 'genomic' testing to see if I am low or high risk for a recurrence or another cancer so we are in waiting mode until results come in. If I am high risk, they'll most likely recommend chemotherapy, along with radiation and possibly hormone therapy. If low risk,  maybe radiation and some kind of anti estrogen therapy.  My Dr. had originally said after surgery, we would likely do radiation, but now that chemo is a possibility, I am pretty down about it all.  It was such a small tumor (.4 cm) that it seems like a lot. I know that it's probably best to get the testing done, but doing all three seems to be overwhelming for me. I know many of you have gone through a lot more, I'm just worried about it all. 

Dx: I DCIS (7/2015) 
ER positive;  PR positive
Family History: sister died @44 from metastatic breast cancer




Tricia Keegan
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Re:Introduce Yourself - Sunday, September 20, 2015 4:40 PM
Hi Kathy, check out the chemo for tips or feel free to pm me:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

eowynshieldmaiden
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Re:Introduce Yourself - Sunday, September 20, 2015 11:11 PM

Thanks so much, Rena! :) Wow - look at what you've survived, too! Seeing your reply tonight has inspired me so much. :) I do try to act as my own advocate, being as assertive as I can about what I need in terms of answers, help to make a procedure easier, etc....I got to talk to the senior tech about some concerns I have regarding my biopsy, as I have neck and back issues, and she was so pleased to hear I've been practicing that position so I can stay as still as possible for as long as they need me to. It's getting easier. I know it's easier lying on a bed than having a biopsy, but - at first I felt I couldn't breathe on my stomach, so I had to train myself to relax, and now I do that automatically instead of freaking out. I'm really glad that my NPs have my back all the way. :) They're so awesome! :) And thank you for those good thoughts. :) I will most certainly let y'all know how my path report turns out! Hoping for B9, but braced for anything!


Gratefully, 
Eowyn :)


eowynshieldmaiden
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Re:Introduce Yourself - Sunday, September 20, 2015 11:19 PM
Hi, Tricia!


Thank you so much for the warm welcome! I found that educating myself about the realities, harsh though they were, of Hodgkin's helped me both get through my treatment and make peace afterward with realizing the risks I'd accepted in accepting those treatments. I don't regret having them - I wouldn't be here TO get another cancer if I hadn't gone through that, most likely - but I do wish they hadn't carried such risks. But this time I know more what to ask up front, and I feel like that can be my way to exert a little control in a situation which can make one feel helpless. I refuse to be helpless...maybe i can't help what's happening to me, or whatever's going on inside that troublesome left side (why is it always left?!?! broke my left arm, my left foot, original lymph node that triggered the investigation revealing Hodgkin's was on my left side, the mediastinal mass was larger on the left side - which might explain this, b/c that side would have gotten a larger hit of radiation...)...but I sure as the world don't intend to take this lying down. If the report isn't good, I can cry, I can rant - but I know that I have to make sure I also get down to business and get the ball rolling. As I told my husband, yes, it would be a loss, but I don't write books with my boobs (I'm a writer :) ). It's a loss that would hurt, if it comes to that, but better to lose "the girls" than my life. 


B9! I LOVE that! Hoping for it - and will keep y'all posted! :D Thanks so much. :) When I came on and saw the messages from you and from Rena tonight, after a long day on the road, it just perked me right up. :)


Thanks,
Eowyn :)


Rena
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Re:Introduce Yourself - Monday, September 21, 2015 10:16 AM
Eowyn, I love your attitude! I smiled when you said you're a writer. You can write whatever script you want for your life. I'm an editor, so I come at it from a different angle--I take what I don't like and edit it. I'm a long way from editing out all the things I don't want in my life, but every little step helps. I'm glad your husband is there to support you through this. Like Tricia, I've got fingers and toes crossed for the best outcome!

Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Rena
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Re:Introduce Yourself - Monday, September 21, 2015 10:22 AM
Hi Kathy. I know how hard the waiting is. I hope your results come in soon and that you get good news. No matter what the results, though, you'll get through this. I don't think any of us knew before cancer just how tough and resilient we are. I know that the thought of three types of treatment is daunting. Everyone here probably felt the same way right after diagnosis, and the not knowing is one of the hardest parts of all of this. Please let us know what you find out. 
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

eowynshieldmaiden
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Re:Introduce Yourself - Wednesday, September 23, 2015 7:28 PM
Because I promised some truly wonderful people here I'd keep updating, here's the hit-the-highlights version of how my stereotactic biopsy went!


*We got to the clinic in plenty of time. :)


*A very nice gentleman wheeled me down, and my brother-in-law wheeled me the rest of the time.


*The whole team working on me could not have been nicer (despite a "rather have Hodgkin's than Crohn's" comment from my fellow...but hey, what does she know? She's in training. ;) ). :) The senior tech was a total angel, attending and fellow were awesome, all ladies, all super encouraging. The tech even stood there and rubbed my back while they were doing the numbing injections, which barely hurt at all, and they kept really encouraging me. Had a tiny amount of mild discomfort, but I've had accidents at home which hurt worse than this. Very nice, very sensitive, got me into a mostly-comfy position, went GREAT. :)


*Now the dread of the biopsy is over. :) Whatever happens, now I just have to wait for answers. And those will come within a week or less. And then I'll *know* whether it's cancer or not. And knowing means that whatever it is, I can do something appropriate! And if it's not cancer, I won't be so nervous if I ever have to have another biopsy. The team was awesome.


*And now I'm sitting here drinking V8 and ice water, watching DVDs, and occasionally icing my L breast as per discharge instructions. :)


So - those are my good things for today. :) Hoping to hear results Fri, but I realize it could be as late as Wed next week.


Thanks for caring,
Eowyn :)

Tricia Keegan
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Re:Introduce Yourself - Thursday, September 24, 2015 4:21 AM
Thanks for the update Eowyn and I replied on the daily joy thread and will be keeping everything crossed for you.:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

eowynshieldmaiden
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Re:Introduce Yourself - Thursday, September 24, 2015 8:44 PM
Hey again, everyone -

I just got my biopsy results back. My biopsy went a lot better than I was afraid it would. The team was really fantastic. :) My results were not 100% what I'd hoped, but they could have been much worse. It appears to be DCIS, stage 0, though the bMRI might tell us more - there's a possibility it could be present and invasive in another area which didn't show up on the mammogram. However, my NP seemed optimistic that we've caught it early. Strongly fed by ER/PR, Her-2 positive but unless it's invasive elsewhere we wouldn't do chemo or Herceptin. We're evaluating both lumpectomy w/radiation or bilateral mastectomy, possibly w/reconstruction, though I'm leaning toward the latter b/c I have some complicating factors which might limit their ability to radiate successfully - prior mantle radiation for Hodgkin's, prior Adriamycin in ABVD chemo, systemic lupus - b/c patients in my situation sometimes don't have good results with radiation. Plus we'd have to make sure they could handle it back here b/c it's too far to go to my diagnosis center every day for weeks. 

Any advice, support, etc. anyone has would be greatly appreciated. I'm doing all right so far, but I know from my past cancer experiences that that can be quite changeable from hour to hour and day to day. 

Appreciatively,
Eowyn

eowynshieldmaiden
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Re:Introduce Yourself - Thursday, September 24, 2015 8:46 PM
Oh, and they're going to do the sentinel node biopsy deal as part of whichever surgery I have. I remember when I was a fresh out of school med librarian and that procedure was brand new! So great it's established now. :)

-Eowyn :)

Tricia Keegan
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Re:Introduce Yourself - Friday, September 25, 2015 6:00 AM
Hi Eowyn,

Well if you're going to have breastcancer there's no better one to have than dcis!:)  I'm really pleased you've caught it early, if you're undecided on treatment options you could always get a second opinion.  I also was her2+ but did chemo herceptin etc, in many cases Herceptin is given anyway regardless of stage etc so if I'd any advice to give it would be to be certain you don't want to push for this as her2+ is/was a very aggressive type before Herceptin.  There's a support site where you could learn more and perhaps talk to others who were stage 0 and may have had herceptin at www.her2support.org 
Thanks for the update and although you have to deal with this and make lots of treatment decisions I'm really pleased it wasn't worse.  Pals
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

makadiff6
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Re:Introduce Yourself - Friday, September 25, 2015 10:08 AM
Hi, my name is JoAnne Garza and I just found out that my biopsy showed cancerous cells. My surgeon called me yesterday with the news. A few weeks ago I felt a thickening on my right breast and walked in for a mammogram. I mentioned to the tech. about what I felt. Next morning a get a call to expect a call from Kaiser BP for an appointment to go in for a sonogram. Which I did in the next few days. I was given a paper after my test stating that in was Normal/Benign. I was elated and went on my way to spread the good news to my husband and family. Still something told me if not cancer then what was this I felt? I made an appointment with my primary doctor to ask her what else it could be. She then sent a referral to surgeon. It was at this appointment that he suggested a biopsy be done, I agreed and he did it right away. Yesterday morning he called and said yes it showed cancerous cells. and that this Monday the department was going to meet to go over new cases and he would discuss mine with the other specialists. I am to expect a call sometime after mon. as to what will happen next. One of my biggest concerns is my carrier does anyone else have any experience with Kaiser? We are in the open enrollment period and I could change right now for the new year. Also I am extremely claustrophobic and he did mention a special MRI of the breast but I am a big woman and don't think I can tolerate that tube. I had one before and totally panicked. Please does anyone have any advice?  

Tricia Keegan
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Re:Introduce Yourself - Friday, September 25, 2015 2:21 PM
Hi,

I'm sorry for your diagnosis but it sounds like you've caught it very early indeed which is good news.  I can't help much on the insurance but you may find something in this link to help you https://apps.komen.org/Forums/tt.aspx?forumid=68

I also am claustrophobic and can well understand your fear, I've only ever had one but managed it because they gave me something to help calm me beforehand and I closed my eyes before I went in and didn't open them again until I was out.  I think you should explain your fear to the surgeon, perhaps an Ultrasound or CT may do instead..  I hope you'll keep us posted and let us know how you get on.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

eowynshieldmaiden
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Re:Introduce Yourself - Friday, September 25, 2015 11:02 PM
Thanks so much! I'm looking into it - my breast NP was out today, but I've got a Herceptin question in for when she gets back Monday. Her staff have assured me they'll make sure she gets it first thing. :) It could be a concern that I've had prior treatment for my Hodgkin's which including an anthracycline and mantle radiation, so I'm not sure whether they're mainly concerned about my heart and lungs. But I've got an e-mail in with ALL of my specialists there, checking what the concerns are for cardiology, late effects issues, lupus, you name it. And perhaps I misunderstood my NP, b/c it sounded like she was saying all DCIS is considered HER-2 positive...I just don't understand how that could be, b/c I know DCIS progresses to IDC, and not all IDC is HER-2 positive. So...maybe she can clarify. I wrote stuff down, but I wasn't 100% processing perfectly and thinking of every question beyond what I had written down....

I don't know how much I'll be on this weekend - I'm going to try and take a day or two "off" from cancer for my mental health. We're getting the ball rolling on scheduling first my final attempt at the bMRI, and then the surg onc, reconstructive surgeon, and rad onc, hopefully all in one trip, and I might try to fit a couple of my other drs or so in there too, save some travel later in the month. But I did just watch a lovely movie that helped shed some light on HER-2, and it's called "Living Proof" - stars Harry Connick, Jr. It was available at a nearby public library (large one), and I highly recommend it. Somewhat emotional - I did do some crying - but it was a great film. :) 

And I'm going to see whether my insurance will cover a visit with the integrative health RD, b/c the two they have did a wonderful food and cooking class at my cancer center a couple years back. My husband and I got to attend, and we were very impressed. They're all about anticancer and anti-inflammatory foods, but they're complementary - they work with your conventional treatment, not against it. It's not about juicing and going vegan in lieu of surgery or radiation or whatever. It's about supporting the efforts of your conventional medical care to help reduce the risk of recurrence. I see an integrative health NP, and I really love her. She's improved my quality of life a good bit; my survivor NP connected me with her, and I'm very grateful.

Oh, and I was able to get some good recs for drs from a post-surg nurse at my place. She was so helpful. She takes care of post-mastectomy pts every night (she's night shift). :) I happen to know one of the drs she mentioned had the same kind of cancer I did. I met him years ago and hoped he could do my surgery if, God forbid, I ever needed it. Here's hoping it works out now.

Biopsy site's looking pretty good. It bled yesterday, but I forgot and pulled my arm up a bit. :P Today I've remembered better, and I got a shower without pounding it (yay shower sprayer). 

Cheers,
Eowyn :)

Tricia Keegan
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Re:Introduce Yourself - Saturday, September 26, 2015 2:05 PM
It can be good to take a break from this Eowyn so can well understand that, not all dcis is her2+ as you say, just enjoy the weekend as best you can and post as and when you need to  and we'll be thinking of you.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

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