Alice, Hanoria and Sue

Hi everyone,
I feel I dropped off the planet for a while. I returned to work last Tuesday, worked a twelve hour day. Wednesday and Thursday I couldn't get out of bed or off the couch. I was so exhausted, I didn't know if I was sick or just just tired from work. I finaly called and made a doctor's appointment on Thursday for 6pm, I awoke from another nap in the afternoon, and felt I was feeling slighty better, canceled the MD appointment. Friday and Saturday I slowly improved, but my new me can be very scary. Could I have been THAT tired from work? I am glad that I haven't started the tamoxifin yet, I wouldn't be able to know if it was se from the med or not. When I go back to the surgeon in May we will discuss the use of tamoxifin. I'm really worried about taking it, so far I'm leaning towards not. The jury is still out on that one.
I don't have to go back to work until Wednesday, I'm taking the amount of days slowly at first ( does nothing for my finances) but still am scheduled for twelve hour days. I was afraid to make too much of a stink and say I only wanted to come back for eight hours, being that my manager was so understanding! NOT. I'll have to wait and see how Wednesday goes. I am going to look for work in another part of the hospital. I applied for a job in...guess where? There was a posting in rad onc for a part time postion, and they don't work twelve hour shifts. I applied for it, and am waiting to hear about it. I don't have experiece there as a nurse, but I'm been through cancer treatment...that must account for something!
I've been trying to keep up with everyone's posts, but sorry to say I haven't.
Sue, I'm sorry to hear about your sore arm, I know how it feels to have another problem after BC, enough is enough. Same goes for Jackie, being tired and sore all the time is not fair. Hanoria, sorry to hear about your breast rad se, I've been lucky in that area, no rash or any effect from the rad. My seroma is getting much better, I've really started to see and feel it getting smaller. I'm hoping for your sake your se improves like mine. Kelly, what can I say...yes I did enjoy Flordia and it was a miserable St. Patrik's Day to come back to! Cold and snowy. You and your DH should try and go in October, it should be beautiful there then.
Jamie, I think I did sign up for the mammosite site, if I didn't, yes I would like to join, I'll go to the site again and see what I can find out.
Today is Monday and it's going to be another beautiful day here in South Jersey. I love that the winter is over, my treatment is over, so much to be thankful for.
Hope everyone has a great day and is feeling better.
Alice
PS Kelly I'm jealous of your picture on your postings, how did you get that attached? I don't even know how to put a smiley face or anything added.

Alice: When do you hear about the new job (on the onc unit)?

Kelly: I love your poop scars analogy! Makes sense to me. When the snow was gone, it allowed the poop to show. When the breast tumor was gone, the breast poop could show. Now, I'm not going to speculate how we all got poop in our breasts, though..... that's for another discussion.

I like the "1 mo down and 59 to go". makes it less formidable than "5 years". Heck, it's only 59 months. It'll be done in a snap.

Energizer bunny? I love it! I think I'll tell my family that I want a little energizer bunny for my grad present.

It's so hard to have no energy. I've always been a very high energy, active, over-achiever, and it's a miserable feeling to only be able to drag through the basics of life. I haven't even been able to start income taxes, and I'm running out of time. I have a hunch I'll have to file an extension because I won't be able to get it done by April 15th.
Mornings aren't bad, but after a few hours the fog rolls in and I feel like a new hairdo on a terribly humid day.....just a limp mess. By the end of the day it's all I can do to drive home. (My kids have learned that they can indeed survive if mom just serves cereal for dinner!)

We are survivors, and we have each other.

We are women hear us roar!

Hanoria (who probably should have gone to bed long ago)

Songbird,
It really is so much easier than full radiation. I had it a year ago next month. I had it inserted at my surgeon's office under local on a Thursday and then went to rad onc to have set up done. Started twice a day treatments (they took about 30 min. total)on Friday and had it removed the following Thursday. I will be honest, the first 2 days were rough, but once my body got used to it, it was just annoying. No showering wasn't fun either, I just took baths and washed my hair in the kitchen sink. You have to keep it clean and dry and change the bandage every day but since you will be there twice a day they will do it for you, you will just have to take care of it over the weekend. This time last year when I was trying to find info about it there wasn't much but these boards were great. Use the search in the discussion boards and read the info there is out there. Good luck and keep us posted.
Sue

Songbird,

All I can say is that if I had to do it over, knowing everything that I now know, I would still do Mammosite. Actually I would have run to get it, instead of inching my way into it.

I'm the pain wimp that insisted on being knocked out to insert it. That is just me, and I could not have had it inserted any other way. I have zero tolerance for pain. The problem was me -- not the insertion.

I'm also the gal who developed some radiation burns afterward, and blister a full month later. But in the scheme of life, I don't care. It is the smallest of side effects, and easily handled.

External beam radiation: radiates (hence destroys) healthy breast tissue, and can't concentrate on "the" spot. There is also potential for radiation damage to chest wall and structures underneath (heart? lung? blood vessels?). Skin issues on the breast are so common that they are almost expected to occur -- burning, blisters, etc. It takes 6-8 weeks, of daily treatments, and rescheduling your life.

Mammosite: takes about a total of 1 week. Mine was inserted on a Tuesday, initial CT on Wed, and therapy started on Thurs. Treatments were twice a day on Thurs, Fri, Mon, Tues, Wed. The catheter was removed after the second treatment on Wednesday. After about one week, I'm done. No running to the hospital, taking time off work, or rearranging my life to allow hospital time every day. Radiation only hits the cells 1 cm around the edges of the cavity. There was no damage to other cells, and no danger of involvement of the chest wall (or structures underneath). the tube was sometimes uncomfortable while in place, but ibuprophen and ice packs handled it nicely -- and remember I'm the gal who can't handle any pain at all, so if ice packs and ibuprophen made it do-able, any other gal would probably say it didn't hardly hurt at all.

I am glad that I opted for the Mammosite. Knowing everything that I now know, knowing all the pros and cons, the discomfort level, and the fuss, I would certain do it again.

If you want any more information, I would be glad to either respond here or in a pvt e-mail. My person e-address is gmvab1@ameritech.net. I get tons of junk mail and just delete them freely, so please put the word mammosite in the subject line so I don't automatically delete your message, thinking it is spam.

Hanoria

Alice, Hanoria, Sue and Kelly,

Thank you SO much for your input and PM's ---and Kelly, your incredibly generous 1/2-hour phone conversation with me helped immensely when I saw the rad onc yesterday. I'd love to reply individually but am a bit tired - do you mind if I reply here to everyone?

First, my path report yesterday was EXCELLENT! Most of the DCIS was apparently excised with the stereotactic biopsy, because they only found a "smidgeon" --- about .5mm of DCIS! And since the surgeon took out an area the size of a peach (in her words), there are definitely clear margins.

Second, the rad onc at Yale is doing a clinical trial with mammosite -- a Phase II trial, and she's using multiple dwell positions to try to reduce skin toxicity. She was appalled at the approx 50% rate of skin toxicity in general mammosite procedures, and wants to change that. The bad news is that it's a very new study (3 patients in the protocol so far). The good news is that she's had no skin toxicity in those three. She's really good -- from Sloane Kettering, treated tons of patients -- and very willing to work with me. I was reassured and impressed.

Thanks to all of you, I requested (and am scheduled for) IV sedation for the insertion, and possibly even for the removal. BIG wimp, here! I have zero tolerance for pain (worse than you all ) Between xanax and iv sedation, and the prayers and support of friends, I'm beginning to think I just might make it through radiation. I wasn't so sure before now.

I'm also seeing the med onc on Wednesday, and hoping I can skip the Tamoxifen or aromatase inhibitors. Too many side effects that I'm already dealing with would be made much worse with the anti-estrogens.... we'll see what the med onc and the Yale team suggest.

I, too, have had frozen shoulder (it's much improved)but on the opposite side from surgery... so WBI would be tough... as it is, it will be tough to sleep on the opposite side of the catheter. We'll see how that goes. I'm just so glad I can qualify for this mammosite trial. Whew, no 6 weeks of radiation to worry about :-)

I'm scheduled for insertion on the 19th, scans on the 20th, and mammosite on the 23-27th. I'm SO grateful for all your help in the last couple days. Sharing your stories has helped me TONS! I apologize for barging in on your friendship thread... may I keep checking back here? It's so encouraging to hear from you (veterans :-) who have gone through this and survived well.

So how long did it take everyone to start feeling "normal" again? Kelly, you said just the weekend.... is that the norm?

Sue, my PT helped a ton with my frozen shoulder - I'm so glad yours is helping with cording. Doesn't it feel great to have hope?

Hanoria, ibuprofen and ice packs were really enough??? wow!

Alice, hope you can continue gaining energy, and find a new job soon.

Thank you all SO much, I'll keep you posted this week as I hear more...

Blessings,
Wendy (aka songbird)

Wendy: You are now one of us, and you belong here. Don't just pop in now and again. Pull up a chair and make yourself at home. Re: the sedation..... I'm the pain wimp. I insisted on being knocked out for the insertion, and I'm glad I did. The removal wasn't great, but was do-able. I took a big dose of ibuprophen half an hour before the treatment, so it would be peaking an hour later -- right after the treatment (when the tube would be removed). After the removal, it only took a few minutes for the sting to stop, then I walked out and drove myself home. The removal itself took less than 10 seconds -- empty the balloon, rotate the tube slightly to be sure it wasn't stuck anywhere, and slide it out. Really pretty quick. It was a big sting, but it was over within seconds. If you have the option of having someone else drive you home, you can really be dosed up with some pain meds ahead of time, but I'm not sure you'll need it.

Alice: my empathies on not getting the job. Having to job hunt is one of the pits of life. I've gone back to working one 12 hr shift and one 8 hr shift a week. The 12 hour shift is a killer -- ye olde exhaustion is really a problem, but I need the paycheck and the BC/BS, so I guess I'll manage.

I finally got my Christmas tree down today. It turned into a Valentine's day tree, and a St. Pat's day tree -- I thought it would also be an Easter Bunny tree, but I had a burst of energy so took it down quick before my energy ran away again.

Taxes. What a nasty word. I'm not sure I'll have all the numbers/papers ready for quite awhile. Now, where did I put that automatic extension form?

Hanoria

Wendy,
Welcome. From your posts you might live up in Ct. I moved to south central NJ last year from Ct. My daughter goes to school at Southern CtSU. My niece is a nurse at Yale.
I'm glad you found us, it is nice to be able to talk with someone who's been through all of this. My surgeon gave me the info on breastcancer.org and it's been a life saver for me. The discussion boards are great, and the site has so much info on BC. I tried the chat room once, it was just too hard to keep up with the typing! Discussion boards are at your own pace, works well for me.
Happy to hear about your path report, sounds like mammo rad and then on the road to recovery.
I hope your shoulder doesn't start to act up, that's what happened to me and it's been a long recovery. I went to a ortho MD got a cortisone shot in the begining right after my lumpectomy, it didn't work. I started PT a few days after the mammo rad was finished, which helped a lot. They recommended a different ortho MD, and at first I didn't want to bother to change. When the pain and sleepless nights kept coming, I did change and I'm glad I did. He gave me another cortisone shot which worked right away, decreased the pain so I was able to really work on the PT. I'm not one to change MD's but I'm glad I did this time. My advice to you would be not to let it go on too long not seeking treatment.
By for now,
Alice

Kelly: your son is at a fancy place, downtown. I'm jealous!

Sue: Are you offering to take away flabby arms? Gosh, that's right nice of you! Please sign me up for both left and right arms. Do you do droopy butts, too?

Wendy: it's a big decision to take (or not take) tamoxifin or one of the aromatase inhibitors. You have to decide what is right for you.
Personally, unless the side effect's become really a problem, it is my choice to take the meds. I had noninvasive ductal in situ, and the wall of the duct was intact. Unfortunately, the cancer was a high grade (=aggressive) form of cancer, and double unfortunate the area just outside the duct was full of "abnormal" cells. It seems probable that a second site was just getting started. Statistics show that I have a 15-30 % chance of it coming back. It is my personal choice that I do whatever I can to prevent the cancer from coming back. I take baby aspirin twice a day to help reduce the risk of clot issues, calcium to help with any bone issues, and will deal with side effects as they come along.

There is no right or wrong. It is a personal, personal issue between the woman and the oncologist. For me, taking the meds is the right thing to do. Maybe for you it isn't. Don't let anyone talk you into (or out of) anything. Read! Read! Read! Learn all you can, and make your own decisions.

Without the Christmas tree my front room looks a million times less cluttered. A bit less "holiday" festive, but at least with the furniture back in place and I can walk through the room without having to walk sideways and dodge branches.

I've done more research on the statistics, and it's a tad depressing to realize that my chances of another go-round with cancer are so high (15-30%). No I'm not dwelling on it, but it does give one pause to think.

Hanoria