More Questions, More Answers (medical)

JJ, No regrets, and Angela made some similar comments on my last post: “So what are they doing to get more research on this particular topic?” “So, there is movement to get more research on this, correct? Hmmm…. gotta start thinking about raising money for it…, “ and “I hope the powers that be are stepping up and researching the heck out of this!”

There is more research beginning, thanks to the work of the IBC Research Foundation and committed doctors like those at the M.D. Anderson Cancer Center in Houston, TX.  In fact, they have very recently updated their website to answer this question, but warn patients and friends that the answer is very blunt.  I’m not up to reading it tonight (I had chemo today, and I’m whupped), but you should feel free to if you can hack it.  There’s a link at the bottom of the IBC Research page I linked to above.  I suspect it says something along the lines that 60% of IBC patients will die within 5 years, even with early detection.  And that 90% will suffer a recurrence.  This is a lifelong issue, people, not just a quick disease to fight, win, and forget about.  But if the answer is more dire, please don’t tell me. 

No one asked the question  I expected: “But are you going to get a masectomy?

I’m not sure if I was clear about this.  For me, personally, and most IBC patients, the protocol is to have 8 rounds of chemotherapy (4 of AC and 4 of taxane), one every 3 weeks, and then, if the cancer has shrunk sufficiently, to follow with a masectomy or a double masectomy to get the rest of the cancer cells and hopefully prevent it from returning.  The masectomy and recovery period are followed by 6 weeks of daily radiation.

Meg asked some questions that I think I’ve answered before, so I am just going to provide some links here.  It is hard to revisit this, Meg, sorry, but I am happy to help provide some answers.  The questions: “I’m a nurse, but not for oncology patients. I am intensely curious about the experience. What does your cancer look like? Is it moving? Does it feel different after chemo? How are you dealing with the nausea? Did you decide to get a port-a-cath/mediport?”

And no, I don’t have a mediport yet. But my friend LawMom does, and she describes her experience with it (as “RoboMom”) in a beautifully detailed manner over at The Merits of the Case.

Dawn asked, “Mine is rather personal, but because this idea scares the shit out of me, I’ll ask – if, after you’re cured, etc. will you share a pic of what it looks like? Or point us in the right direction, for those of us who need to know what we’re looking for?”

Dawn, don’t let it scare you.  This disease is still exceedingly rare.  Most symptoms (like inflammed skin, redness, achiness, and potential breastfeeding difficulties) are similar to mastitis. But if it looks like mastitis and it doesn’t get better after ONE ROUND of antibiotics, it’s incredibly important to go BACK to your doctor and get a referral to a breast surgeon or specialist who is willing to run the tests.  Including a biopsy if she’s at all concerned.  And there are symptoms that indicate an immediate core and/or skin biopsy: itching of or behind the nipple, one inverted nipple, ridges or thickened areas of the skin, nipple discharge (if not breastfeeding, or if you are and there’s blood in it), peau d’ orange (where your skin is dimpled and looks funny, sort of like an orange), a bruise that doesn’t go away, and thickness changes in the skin of one breast.  These are things to look for.  I’m not about to post pictures of my breast on the internet (that one sentence just brought out the trolls!) but you can google it or check out the picture on the Susan G. Komen foundation information sheet.


9 Responses to More Questions, More Answers (medical)

  1. canape says:

    Here’s the only thing you need to see from that page, S.

    “Regarding the statistics presented below, please remember that no person is a statistic and seldom or never does one’s personal experience with IBC match any of these statistics.”

    You are not a statistic.

  2. How strong and kind of you to patiently and frankly answer questions when it must be difficult. So often I wish I could reach through the computer and make this easier for you. I wish I take a portion of your pain so your load would be lighter. Each day you, and your family are in my prayers. And those are not empty words, my prayers are full of Whymommy these days.

  3. whymommy says:

    Thank you, Joy. I appreciate each and every one. The chaplain came to visit me today, and I was in much better spirits — because of your prayers, I know.

    Canape, step away from the computer. Pregnant women should not be stressing themselves out over pages their friends are scared to read….


    Love and light to all reading tonight. I’m logging off to try to get some sleep.

  4. Kristin says:

    On vacation, past my bedtime and thinking of you. Just wanted to check in and say that. I hope you’ve had a good night.

  5. Astrid says:

    I just have to comment about the port. I’ve had a port since I was quite little (not because of cancer though) and it really is a life saver for me. Last time I was in between ports (eventually they give in) I was ready to just say sod it to all what IVs was called. They blew all my veins in my arms, hands, legs and feet. Not fun. So if you ever get problems with your veins, I’d highly recommend it. Mine’s in my upper chest and while it’s really visible, it’s not bothering me at all.

  6. Gill says:

    Thank you so much for being willing to share your knowledge and experiences so frankly – you are a remarkable woman.

  7. Jenster says:

    So will you do reconstruction after and if so, do you know what kind? I had a right prophylactic mast. in December with bilateral DEIP reconstruction at that time. Just got my nipples Monday. Woo hoo! :o) But the choices seem to be nearly endless. So much to think about and decide.

  8. whymommy says:

    Jenster, I’ll email you privately….

  9. Meg says:

    Thank you for being brave enough and strong enough to share your story. I am sure that you don’t feel brave and wouldn’t wish this on anyone. But THANK YOU. I hope and pray for complete remission for you.

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