Tamoxifen

The latest study I can find on Medline has this set of statistics:

For women who had a mastectomy, post treatment of A provided recurrence of cancer results of B:

Treatment: Rate of Recurrence:
No Systemic treatment_____________________12.6%
Chemotherapy Alone________________________5.6%
Tamoxifen Alone___________________________4.6%
Chemo & Tamoxifen_________________________5.3%

I'm starting the Tamoxifen tonight.

Cancer stuff

I may have to construct a picture with a single blue footed booby on it, mourning the fact that it's all alone...


I got the results of my blood test, and yes, my body has the enzyme to utilize Tamoxifen. The side effects are pretty ugly and scary, though, although their chances are low. If it happens to me, though, the odds are irrelevant.

I've been digging through Medline, and there's one recent study that shows that in that one study, the chances of recurrence after mastectomy are significantly lower than with radiation therapy or nothing. However, most of the info is on lumpectomies, not mastectomies. I found a study just a year older that said that the benefit to risk ratio makes the use of Tamoxifen iffy. On the other hand, my DCIS was grade three. On the gripping hand, the mastectomy is supposed to be a 98-99% cure; the Tamoxifen is to reduce the risk of developing cancer in my remaining breast. Supposedly, the risk is 5 to 10% without the Tamoxifen, and about 5% without.

Hence my dilemma. I'm leaning towards taking the drug, but that increased chance of uterine cancer, though less than the chance of recurrence of breast cancer, scares me. If I can't come to a decision, I'll wait to take the pills till I can call the oncologist on Tuesday. It really feels like a catch-22 situation right now. Argh. Heavy decisions.

Another passage.

Today is our 15th wedding anniversary. We've certainly been put through our paces in the past few years. We've been through a hell of a lot together. I can't think of anyone better to go through the fires with me. We've supported each other through sickness and poverty -- now for some health and wealth in our future. I love you, sweetheart.

Time passes

The Sprog turned 13 on Sunday. I am now mother to a teenager. "Look on my Works, ye Mighty, and despair!" She did well for herself -- family sent her money; we gave her a season pass to Elitch's, a gym membership, a fanny pack with skulls on it that stirred delight in her Goth heart, and a sketchpad. The Housemate is threatening her with a frilly white dress with pink polka dots and lots of lace. Her Dad told her "Just five more years!" I'd love to pay her way through college, but it looks like she's going to need additional help, which we may be able to get from a grant to the Denver school district.

We were planning on having supper on Saturday at a favorite buffet place with extended (OK, adopted -- the girls are her godsisters) family, but they got stuck in the Colorado Springs area with car trouble. So we implemented Plan B, and on Sunday, we took her and two friends to that restaurant, and let the girls have their own table. They really, really enjoyed themselves.

It's Off!

The mastectomy bra and compression stuff is off. Feels strange. My silhouette has gotten stranger, now that there is no cloth or gauze in place. I do have a soft, light pillow to restore my shape for going out. Right now I'm getting used to being able to breathe again after 3 1/2 weeks in a bra two sizes too small. I figure the dent in my ribs will fill out sometime tomorrow.

The thing hooked sturdily in the front. Eleven hooks worth of sturdy. Ah, breathing!

My nails are terribly soft and tearable -- they're almost all down as short as possible, and one nail has torn into the quick.  Any suggestions?

I'm looking for a grown-up coloring book (I have colored pencils and lots of time) with mythical creatures.  Any leads greatly appreciated.

Other than that, my therapist says I'm entitled to freak out and get upset and that doing so is better than bottling it.  Since most of my freaks take less than 10 minutes, that's not bad.

Sleepy again; I must have left the house today. :^P

And now for something completely different.

For map aficionados like me, a map blog, strangemaps. Political, geographical, satirical, and just plain strange.

I got the drain taken out today. I've had a plastic tube hanging out of my left side for a little over three weeks. The normal amount of time the drain stays in is two weeks, but for some reason (lower body not working so hot...) I use my arms more than most people, so I kept the drain longer. This caused a couple of minor complications, as my flesh had attached to the suture and to the drain. It didn't hurt, exactly; it was just uncomfortable. There was a pull to removing the stitch, as the skin had bonded to it. The part of the drain inside my body was a tube with holes in it to take in the fluid. I had about 8" of the drain inside; as the PA said, larger breasted women need more length in the drain. It felt rather like one of those cheap bead chains being pulled out. I didn't watch -- I've learned that's the best idea.

So I have a hole in my side and a new bandage -- I get to take it off and shower tomorrow after 24 hours, which works for me. Then 24 hours after that, I can take the evil mastectomy bra off! Yay!!!! I was going to throw it away, but I've discovered that I get a bit sore, so I'll keep it and the towels I'm using for compression for a while before disposing of the darned thing. The PA told me she has patients who insist the bra is too tight (It is; it's about 4" too small in the chest, but that's because it's there to provide compression); and other patients who love it for its "support" and want to buy another one. It has some similarity to a minimizer; it's deliberately tight and presses into the breasts, and the mastectomy side is filled with gauze or towels or other cloth to provide compression. She said the things are $80 bucks. Ugh. It's no secret I hate this one, but I don't have much longer to wear it, thank goodness.

And in two weeks I can have baths and I can swim. My swimsuit will look a little strange, but I am really looking forward to getting in the water and moving around; sleeping and taking the chair places are hardly exercise, even if traveling in the chair is wearing.

Oh yeah, I've started going to the various doctors by myself. Since I'm not driving, it's handy that both I and my doctors are a few blocks off of Colorado Blvd. Hubby built a ramp, and the chair usually stays in the house. (Today, we had the chair in the car, as he went to the doctor's with me for the drain removal.) Monday I went to my GP, who I have to see monthly for my pain meds, and Friday I will be going to therapy. But it's a single bus ride, and all the busses have wheelchair lifts or ramps, so while it takes a little longer, I don't have gas or parking to pay, and gimps get a discounted fare. Plus, I don't have to pull Hubby out of class, or Housemate out of work. It takes me a little longer by myself, but right now my time is inexpensive, so that's OK; after all, it's taking care of me. And there's several little shops and a grocery close enough for me to get to, so I'm not constantly stuck doing nothing. I do have a faint ache in my chest, but I'm sure that it will pass soon.

This weekend should be busy; the sprog turns 13 on Sunday. That means I will be parenting (ominous music) a teenager. As math would have it, she was born 3 days before our second anniversary, so Hubby and I will celebrate our 15th anniversary on Wednesday. Wow. It seems both longer than that and just a really short time ago at the same time. I don't know if we're doing anything for it; maybe we'll manage enough fundage to go out for pizza or something. My folks got us a zoo membership; anyone local who wants to hit the zoo with us, we can bring an adult each and various and sundry kidtypes. I plan to spend some time at the zoo this year -- we have the pass and I enjoy going there. Need to check the bus schedules; I bet I can go there pretty easily from here once I'm stronger. The zoo is also more-or-less off of Colorado Blvd. The museum is in between the zoo and the road, but it's still reasonably close.

Rambling

Saw the surgeon on Tuesday. Finally have the stamina to post about that. I still have the drain, most likely because I use my arms a lot. Since I need them to get me moved around more than most people, since my legs aren't dependable, that's kind of a given. The surgeon said that she wasn't going to ask me to hold still, but she would remind me that moving would make it worse. So I folded clothes in order to do laundry so we could wash the nasty mastectomy bra -- She said I could take it off long enough to wash it and run it through the dryer, so we did. Still, the drainage was less today, and I'm hoping to be able to have this thing out by Friday or Monday. Then I only have to wear the damn bra and pressure artifacts for another 48 hours. At 48.1 hours, the bra goes into the trash, while I sing "I'm Free" from the rock opera Tommy and gently dance around. Then, most likely, I'll take a nap, since that seems to be a lot of my daily schedule these days. I've been wearing this overly tight binder for way too long. The preop estimate was that I'd wear it for two weeks, and that was over Tuesday.

The armpit boob is partially loose skin from the surgery, plus some fat, plus some swelling. She says that it will go down some in the near future, but will take a year for all the rearranging to take place, and even then I'll have some excess skin there. I have excess skin in several places from losing weight, so that's not too upsetting. I'm quite numb from the chest, under the arm, to the back. That's normal, which I already knew, and will improve but not go away. Whee. I'm to see her in 6 weeks, although I need to remember to make that appointment when it's business hours.

I ordered three bras with pockets from Decent Exposures, so when I've healed enough for a prosthesis, I'll have bras to put it in. DE's bras aren't cheap, but they're custom fit and hand made, and less than the mastectomy bras I can expect to get elsewhere. They have high-quality clothes in all sizes, too. I'll eventually be getting more leggings from them as well, I'm sure.

I took the pampering money I was gifted with (Thanks to all of you!) and bought skin oils, some cocoa butter lotion for use on my scar after it heals up, and some nice soaps (of course -- I'm a sucker for good soap. Althaea as usual, came through with lovely products. And folks were so kind that I was able to go shopping for nice new socks at Sock Dreams, where I got toe socks to wear under my sandals, a couple pair of thigh high socks for fun, and some marvelous big cushy chenille socks that are marvelous for tucking my feet into to warm them up. Very luxurious.

I convinced Hubby that I didn't need to go out for Mother's Day -- the sprog wants to go out for her birthday with family and we don't go out so often that going two weeks in a row is kind of overkill. ( I need to make sure local family can all make it.) I did ask for some Breast Cancer Site pink ribbon doodads, and expect to see them around the weekend. Including a toe ring. I have very fine feet and ankles, and reasonably skinny toes. So while rings are usually not available in pudgy square hand size, my toes are in the "one size fits most" range quite comfortably. And I wear sandals as often as possible, too.

Overdue update

I procrastinated writing for a while. My apologies to those of you watching this space for progress -- I've been healing and dealing and haven't been writing. I still have the drain in my side, which I find terribly annoying. It pinches, and I have to continue to wear this ghastly mastectomy bra while I have it and for 48 hours afterwards. Plus, I can't lean on my left side, which is my preferred position for computer use. When I sit my back hurts and my hips cramp, causing me to lay down. I've been laying down and sleeping a lot -- the Bassets love it. "Oh goody, Mom's sleeping again. We get to snuggle!"

So. I've talked to Reach to Recovery, a group from the American Cancer Society specifically for women who have had mastectomies. That was a nice visit, and they gave me a lightweight boob placemarker that I can wear before I heal enough for a prosthesis. It's made with fiberfill and has safety pins to keep it in place in a bra.

And at some point last week I looked in the mirror after a shower and saw that, to my horror, I was growing a breast under my left arm. Let me start by saying I am a big woman, and I had ample breasts. It was about a G cup. Well, when the left breast was removed, there was swelling under my left arm. It looked to me like about a B-cup tucked under my arm. I cried for hours that night, sure I was going to look like a freak. After I calmed down, I realized there is a bit of a fold of fat there on the other arm, it just hasn't had the breast removed from in front of it. Add to that the fact that I'm swelling and still draining a lot, and looking at other large women who have had mastectomies, the swelling should go away for the most part, and the fat left will probably redistribute over the next several months. I was horrified to see it, but now it looks more normal to me. And the swelling has gone down some.

Saw the oncologist on Friday. Turns out that a full pathology report placed the cancer at Grade 3; it was growing fast enough that there were pockets of necrosis within the small tumors. It was still a Stage 0 cancer, with multiple small tumors, but it was throughout the breast, not just in the front left portion, and growing faster than originally thought. That meant the mastectomy was definitely the right choice, and the surgeon got me really good, wide, clean margins, but it still shook me up to hear it was worse than I though. It's still 98% curable with surgery alone, though. I had to get a blood test to make sure my body can utilize Tamoxifen, although it sounds like it's a pretty good chance that it will work as planned. Once the test is back, I need to record the day I start Tamoxifen for the oncologist. I see him in three months, and see a genetic counselor next month. I suspect that there won't be any real reason for a genetic test. I don't know my cousins well enough to know if they have cancer, nor do they know that I have. I guess I should make an effort to contact my cousins and let them know, but that seems a pretty daunting task, especially since I haven't spoken to any of them in many years. I saw a few of them after Hubby and I got married, but haven't contacted any of them since then.

Tomorrow I see the surgeon. I probably don't get the drain out tomorrow, unfortunately, but she can check the drain site and make sure everything is OK. Maybe I can get a second bra (or permission to take this one off for a few hours to wash it) so I won't be grossed out putting it on. That's about the extent of my hopes for tomorrow's visit; a clean bra.

Prognosis

Ah, Hubby didn't post the outcome of the surgery, sorry those of you on the edge of your seats. The sentinel nodes (4 of them) were clear of cancer, therefore, there was no invasive cancer, it was localized to the left breast only, and the surgery cured me of cancer.

I will, however, be taking Tamoxifen for up to 5 years to help protect my remaining breast. I see the oncologist next week and will probably start the Tamoxifen then. I also need to shop at Puritan's Pride for a multivitamin without soy, and possibly a green food for energy. I will also be adding my Calcium and Vitamin D back in this weekend.

Griping

My mastectomy bra hurts. It's digging into my ribs with a vengeance. I have to keep the left side packed to keep pressure on the incision, for 48 hours after the drain in my chest is removed. The drain is another fun part of this -- There's a drain pulling fluid out of the surgery site. I can't have it removed till I drain less than 25 cc in 24 hours. The last 24 hours collected 130 cc. That's a fun 3 times a day process, where I have to let Hubby strip the drain hose, and he has to try not to tug on the drain.

My pain management isn't great; right now I'm in tears waiting for the Percocet that I just took to start taking the edge off the pain. No pain is a fantasy that I can't even fathom. I can't get comfortable, because my favorite position for surfing the Web is on my left side, which even if my left arm could stand it, would be lying on the damn drain. I mistakenly thought I could cut back on the Percocet today, and just proved myself very wrong by bursting into tears at nothing.

The healing mood swings have started. I've spent today vacillating between happy, standard, and horribly depressed. Gromit has been pretty good at snuggling up to me when I feel lousy. Bridget has even given me Basset lovin's.

I'm glad the surgery is over and done with; I just wish I could sleep through the healing process. Actually, I kind of am; I wake up, and when I shift to a lying position to give my back a break, I usually fall asleep.

On a sillier note, the annoying "Mr. Barky von Schnauzer" commercial for Petsmart that I mostly see on Animal Planet has led to Bridget having the second name of "Howly von Basset." She doesn't answer to that, either. I can't imagine why not. There are several obnoxious ads on TV at the moment.

When I came home from the hospital, I had an Amazon box waiting for me. It contained the first two books in the Dresden File series, and the package was a gift from someone I didn't know. I wrote her a thank-you note, and she said she lurked on one of the lists I subscribe to, and my story had touched her heart. She also said she'd been intimately involved in the mess that is our current medical system and she sympathized with me.

Oh, and when I was in the hospital, due to a room shortage, they put me in a Suite! It's about $600 more a night for a Suite, and is usually occupied by wealthy folk who are having elective (or not so elective) surgery. The floor is staffed better than the regular floor, and instead of hospital cafeteria food, the Suites have their own chef. I asked his name, which seemed to surprise him. He'd give me my food and tell me to "eat up, you deserve it!" He was a total sweetheart. There was an HDTV in the room, a table, a couch that could pull out into a bed, a dressing mirror, and a recliner. I spent a fair portion of Wednesday afternoon and evening, and my waking time on Thursday, in the recliner. It was nice. Not an extra $600 a night nice, but a nifty luxury to be bumped up to.

Ok, the meds are starting to hit, so I'm no longer in tears. I'm just remarkably uncomfortable. But my left arm, while sore and having an odd burning sensation on the back armpit, appears to be in pretty decent shape -- I can lift it and even hold it over my head, though not for long.

Mostly, I'm bleah. But I think it will get better. I hope.

I'm home!

In some pain, but fairly well medicated. Hubby put a headboard on the bed so I could use a pillow chair(very comfy), and I'll doing a lot of resting. Part of me doesn't get why I'm so tired; after all, I'm not the one who did all the work of removing a breast; I just laid there! However, the rational part of me is aware that losing a body part is a trauma that my body has to recover from.

I'll catch up on email, etc. gradually -- I'm posting this note before checking anything. I managed not to react to tape this time, which is a really good thing considering the amount of Tegaderm(TM) that I had on me. I've looked in the mirror with no clothes on, and it does look odd. However, it still looks like me in the mirror. My belly looks pretty big with no breast above it. I'd prefer not to go through that again any time soon, though. It was hard on the whole family. Everyone is starting to relax again, finally, from the stress. The whole family, with the exception of the kiddo, is utterly exhausted.

The kiddo, though, developed a back and neck spasm yesterday, though. Ask me where I think she puts her stress. She'll be needing Physical Therapy; her father will set up some appointments this afternoon.