Roll call

Roll call!  It’s the first of the month, and I’m thinking about all my friends with cancer or a cancer history — how is everyone?  Please check in by leaving a comment below!

Edited to add:  Read the comments.  There’s some really interesting discussion going on, about remission vs. cure, lingering nerve pain, preventative surguries, foobs, and more!

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41 Responses to Roll call

  1. whymommy says:

    I suppose I should start — I’m currently in remission, but fighting lymphedema in this summer heat. Twice-weekly PT and constant arm-wrapping is helping, but it’s still a problem. I’m hoping for insurance to cover a lymphedema pump, which I heard about thanks to this wonderful group of moms.

    • Stella says:

      Susan – I’ve always wondered why you consider yourself to be in remission. Until you’ve had a recurrence aren’t you considered cured – cancer free? I know that’s what I consider myself until proven otherwise… Just curious.

      • whymommy says:

        My oncologist says no. Remission is the word she uses, and we do quarterly checks. Don’t know why … I would love to consider myself cancer-free, and maybe I will — God knows I think about it too often if that’s the case.

      • Lyn says:

        My oncologist – who is awesome by the way- says we are going for a CURE. She says IBC can be cured if caught early enough with proper treatment. It’s just terminology of course, but I HOPE to be able to consider myself cured one day.

      • Stella says:

        Hmmm. I KNOW my onc considers me cured until I’m not. If it were me I would question yours, Susan. What does she know/presume that you don’t???

      • Stella says:

        Lynn – That really seems like overkill to me. Your uterus has nothing to do with ovarian cancer. Unless, of course, there’s something else like polycystic uterine blah blah blah…

        I might get a 2nd opinion on that one.

      • Now I am going to preface what I am saying by saying that I do not have IBC… but my onc told me I am in remission or no evidence of disease. My chance of reoccurence goes down each year especially 2 yr/ 5 yr and then at 10 years I would be considered cured.

        About the Hysterectomy… my OB pushed for it and the Onc convinced her to only have the ovaries removed. He wanted to help support the bladder etc. I also have heard that uterine cancer does not hide as much as ovarian. Lyn the other thing I would question is being able to have both surgeries at the same time. I was told they were both too large of surgeries to have at the same time (dirty surgeries). They did the ovaries at the same time as they switched out my implants because they were both outpatient. It still amazes me that we all(or most of us have breast cancer) but how many differences there are with this cancer and its treatments.

      • Lyn says:

        Stella- I’ve had some suspicious paps in the past though nothing more serious, and I should have mentioned that my grandma had both Uteran and Ovarian cancer, and her daughter my aunt got Ovarian both in their 20’s. I’m 30 and have IBC, my mom died at 51 of cancer my other aunt is 43 and has been fighting a brain tumor primary since age 35. It’s a very interesting dna sequence the dna gal told me. So they aren’t taking chances I think, and I’m OK with it considering my family history. I know it is alot, but I want to LIVE.

        MaryBeth- I also thought it would have been too large of a surgery to have done all at the same time and talked with 3 different docs who all think it is going to be OK. They did talk about the ‘dirty’ surgery, the uteran area being dirtier which is why it’s the second half. I was truly surprised when they said yes let’s do it and be done with it, and since it’s so hard to schedule stuff with my kids and no help during recovery I think for me at least, it’s the best decision. If I actually stay 2 days in the hospital, that will be a surprise.

  2. whymommy says:

    Also, we’ve just heard that Katie has entered hospice. Please drop by her blog and offer kind words if you can.

  3. Just posted, but will sum it up anyway. Brain Mets discovered at the end of June. Radiation during July. Now on Xeloda and Tykerb (Lapatinib).

    Will do an MRI soon, and another general scan in another two months. Will know more after I get those results.

  4. lorri s. says:

    I just had my two year cancer-a-versary on the 28th. High normal tumor markers holding steady as of July, next check up in October. Loving my 19 months post chemo hair. Not in love with my foobs. Enjoying our new foster dog with 3 legs!

  5. Jennifer says:

    I’m Jen (Jenster) and I celebrated my 4 year cancerversary from invasive breast cancer in May and have been happily dancing with NED since then. I still have lingering WBC issues and other mild problems from chemo, but mostly I’m happy and healthy. And Lorri – I’m not so in love with my foobs either. :o)

  6. throwslikeagirl74 says:

    I’m Nicole and I’m in the middle of breast recon. I have one frankenboob that’s a lat flap that looks great and the other frankenboob that looks like a big scaly mess. I’ve been on antibiotics since July. Hopefully this one will be the last one. Cross your fingers for me because if it doesn’t clear up it’s back to the drawing board for frankenrighty. Just had my 3 month onc visit and she says everything looks great but (there is always a “but” isn’t there?) she wants me to get a colonoscopy. Woo.

  7. Lyn says:

    I’m Lyn, diagnosed with IBC in April 2009 finished my 9th Taxol/Herceptin last week and this week will be my 10th of 12th. I’m getting scared as I’m almost done with chemo and on to surgery which is a modified radical mastectomy on the cancer side, a bi-lateral on the right and a full hysterectomy all at the same time. We’re looking at the last week of Sept. 2009, the two surgeons are working on a date. insurance is covering it all as I tested positive for the BRCA2 gene and being only 30, we all decided it was the best course of action for now. Wish me luck

    • whymommy says:

      Lyn, I had the same thing, only my mastectomy and hysterectomy were about 6 months apart. I wish they’d been together, though, because once I heard the link I was ready to have them all gone!

      With all of them (breasts and ovaries) gone now (and no reconstruction, I’m happy and healthy and not worried. I hope that it does the trick for you too.

      One thing I want to mention, though (and I’ll email this as well), is the massive HORMONE DROP that you may experience after the hysterectomy. It’s JUST LIKE the postpartum experience, so be prepared. (It’s easier to take once you know what to attribute it to.)

    • Stella says:

      Lyn (and Susan) –
      Are you doing the complete hysterectomy (uterus also) or just the ooferectomy (ovaries only)? They took my ovaries. I’m also BRCA 2 positive. Susan’s not kidding about the hormone drop. There’s nothing like crashing into menopause just like a brick wall! 60MPH to 0 in 2.2 seconds flat!

      • whymommy says:

        Oh, good point, Stella — I actually just had the oopherectomy. They left my uterus for “structure.” 🙂

      • Lyn says:

        Yes they are taking the whole enchilada. My grandma and my aunt both had ovarian cancer in their 20’s and they don’t want to take any chances. I’m gonna be cleaned out I guess, cervix uterus, everything. My doc put me on an anti-depressant this last week that takes about 4 weeks to get into the system so the hormone crash won’t be as hard, hopefully it helps.

  8. I’m MB.. just hit my 3 year and 4 month anniversary. Thankfully I am feeling good. I am trying to enjoy the summer in our new home and get the kids ready and settled into new schools. I am at 6 month visits with my oncologist which makes me a little nervous… but I am trying not to worry and enjoy life!

  9. Stella says:

    Stella here. I’m just a month and a half away from being free of IBC for 3 years! I’m feeling great. Eh. Actually, I’m feeling pretty normal which is crappy some days and ok the others. And THAT is great! Has anybody noticed how many of us IBCers have made it to to 3 year mark… Isn’t that an anomaly of some kind??? At least according to the old statistics…

  10. Spruce Hill says:

    Hi Sarah here. I am 1 year and 8 months past my doagnosis date. Will be two years in January. I was diognosed with IDC and had a bilateral mastectomy with reconstruction and did 8 treatments of AC/T. I am doing well and have just had my 4 month check up. I am having some pain issues on my cnacer side but am told it is just my nerves reattaching. Have some issues with sleeping but that is slowly improving. I have started taking yoga classes which are funded by Susan G. Koman and I love it. They are free and well needed in our community!

    • Stella says:

      That nerve reattachment pain is no joke! I’m still having it from time to time… and in the exact same places, too. I sure wish the dang nerves would just reattach already!

      • Spruce Hill says:

        Stella it is good to know I am not the only one. It has been stressing me out a bit and always feel like the cancer will rear it’s ugly head at any time. I hope this feeling finally goes away soon!

    • Spruce Hill says:

      I would also like to add that my kids are showing some signs of stress. It has been a while and the have been great so far, but it seems to be a bit delayed. We are working on this and hope it is just a bump in the road!

      • It seems like mine are finally (hopefully) starting to get back on track. The doctors also feel that my kids being adopted (abandonment issues) then having their adoptive Mom diagnosed with cancer sent them on the anxiety rollercoaster. Cancer takes a toll on the whole family system emotionally. Damn I hate this disease.

  11. Hi everyone, Fran here. Just finished my year of Herceptin last month and waiting to get my port removed. Feeling great! Biked the Pan MAss Challenge (a bike race in Massachusetts to raise money for cancer)–150 miles in 2 days. Will need a couple of more surgeries to get my Barbie Boob just right… happy to have my hair back –even though it’s REALLY curly! Trying to forget about chemo-induced heart damage and getting on with my life. Can’t tell you how much you all helped me through the last 2 years. Thanks!

  12. whymommy says:

    Has anyone heard from Hedgie lately?

  13. Jo says:

    I guess I’m the new kid on the block and also one of the few here who doesn’t have a form of breast cancer. You women amaze and encourage me though immensely.

    I tried several times just posting a kind of short little update but the dang thing keeps turning out long. LOL.

    So I’ll just say no cancerversaries for me ever BUT I am getting ready to celebrate 5 years since diagnosis which I’m excited about because “statistics” gave me a 16% chance for 5 years. YAY!!! Take THAT statistics! 😉

    I look forward to getting to know all of you and congratulations to those who are cancer free or in remission.

    Hugz

  14. Laurie says:

    Laurie here. I live with mets – it spread to my liver but I have been NED for two years!! I just had a CT on Friday to make sure that’s still the case. I continue in treatment, though as my cancer was VERY aggressive and my onc feels that the chances are good that the bad cells are lurking somewhere. I did get a month off of treatment this summer, which was awesome.

  15. jillaldrich says:

    Hey, it’s Jill. I just celebrated 3 years cancer-free this July. I had Invasive Lobular Carcinoma), bilateral mastectomy, A/C chemo, radiation, three reconstructions, one total laproscopic hysterectomy 🙂

    The hysterectomy was a result of Tamoxifen. It caused uterine cysts that bled. It was like having a period all.the.time. Tamoxifen creates a condition in your uterus that is not unlike pre-menstruation. Your uterine lining thickens, however, there is nothing that signals it to shed (which happens in menstruation). I had a light “period” every single day for three months. Then one day I just started gushing blood. Took a megadose of estrogen to stop the bleeding and had the hysterectomy two days later.

    I am quite happy with the surgery, but man-o-man was I shocked by the zero-estrogen depression. I am using a Femring, which has a very low dose of estrogen (an amount equal to what my peri-menopausal ovaries were generating). I know estrogen is the bad guy, but the way my gynecological oncologist explained it was that this low dose would increase my total recurrence (based on women’s health initiative study) by 1-3 percent. That is a risk I am willing to take. I was crazy depressed, and it had nothing to do with the actual hysterectomy itself.

    PS/ Where have I been? What is NED?

  16. jillaldrich says:

    PS: I live up the block from Hedgie and talked to her a week ago. She is making big career plans…

  17. Spruce Hill says:

    It is great hearing about how everyone is doing we should make this a monthly thing!

  18. Stephanie says:

    HI, Stephanie here. I’m officially done with treatment and surgeries (having just has my exchange surgery – i.e. breast implants – last month). I had stage 2 breast cancer, chemotherapy and double mastectomy and reconstruction. I now take Tamoxifen. As far as we can tell there is no more cancer left in my body.

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