Alice, Hanoria and Sue

Congratulations, Sue, on a GREAT mammogram! That's so reassuring -- I'll echo that Thank God!

on the bizarre weather front -- did you notice that DC will get 2" of SNOW tomorrow? We have to travel south to speak at a NC missions conference -- and even there it won't be more than about the mid 50's. Then again, I spose it will be 100-degress-plus this summer and we'll be wishing for these days...

Happy Easter yall!

Wendy

Hi everyone,

Sue, great to hear your mammogram news. What a relief. I know that I'll breathe a sigh of relief after I have mine in May. I haven't made the appointment yet, maybe I'll do that next week. The radiology place I go to has a radioligist there who will look at it right away. That's what they did when I had extra views in October when all this started. I'm assuming that's how it will go, if not, I'm sure going to ask.

I had a question for you guys, my breast surgeon is the one who will prescribe my tamoxifin for me. Is that unusual? It seems that from what I've read, that all of you guys have seen a medical onc for that. I see the surgeon after my mammo in May, and that's when we plan to discuss tamoxifin again. Should I ask to see a med onc? She was ready to write me a prescription when I saw her last month, no blood work or anything. Maybe I'm being paranoid. It's not like I want to see another MD, but I take medication for high blood pressure and high colesterol. What's your opinion on this?
Thanks, Alice

Alice,
My surgeon sent me to an onc. 4 days after my lumpectomy. He was expecting me to just get tamoxifen. His take on my cancer was lumpectomy, mammosite and tamox. He was surprised when the onc said chemo. So I basically asked all of my drs. and he was the only one who said no chemo. So, I went with chemo. I also take meds for blood pressure and thyroid. Don't worry about that, I am pretty sure you can take the tamox. with other medication. I think if it will ease your mind, you should make an appt with an onc. I actually see my onc. every 3 months. She does blood work and a physical. I see my breast surgeon every 6 months for mammo and breast exam only. Personally I feel better having someone monitoring my se's of the tamoxifen.

As for the mammogram. My surgeon looks at the films right there and I see them also. I was not expecting a follow up letter so when I got a letter after my first post surgery mammo in Sept. I was shocked when it said basically we see something that we believe is benign. I freaked! Of course it came on a Saturday and I had to wait until Monday to call. It seems they have a radiologist on staff who has the final say and since it was the first one post surgery there was nothing to compare it to. So this time, when they did the new view they also had nothing to compare it to. What he saw he was sure was lymph nodes but as before the radiologist has the final say. I left there with a firm it is nothing but I wanted to see it from the radiologist.
Anyway, I say go see an onc. just for your piece of mind.
Sue

Sue,

By mistake I hit the enter button before I said YAHOOOOO! on the marvelous mammo report! We all share your major league relief.

Gotta ask, though, how tough was the first mammo after the surgery, etc? I really dread it.

Hanoria

Kelly,
Maximum lifetime medical coverage? Hmmmm....guess I'd better check that out. If my policy has it, I've got a big problem.

So far this year, my DH has had kidney stones, I've had the whole breast cancer thing, my 10 y/o was in ER with a neck injury, my 14 y/o broke his arm, and this week my 12 y/o son had abdominal surgery (both sides)to fix varicose veins in the scrotum. And it's only the beginning of April.

I figure that if I quit my job I'll get a "thank you for leaving" note from BC/BS.

All kidding aside, I have no clue what I'd do without medical insurance. I feel so badly for people that don't have it, and can't get it. Considering everything, I'm lucky in a lot of ways.

I don't think the hospital would casually provide mammogram, repeat mammogram, biopsy, partial mastectomy, and mammosite radiation treatments ala free. I kiss my Blue Cross/Blue Shield card regularly!

Hanoria

I was given a little pillow when I did my pre-op. My tumor was in the same place. It worked great! I put it between the seatbelt and my chest and it protected me from any rubbing, pain, etc. I used it for many weeks after mammosite. I had a lumpectomy and Sentinal Node Biopsy but I did not have any drains. The surgery is really quite easy and recovery was easy also. Keep us posted and ask any questions you need answers to.
Sue

Kelly,
Trust me it is probably the tamoxifen. I did not like myself at all about 1 month in to the meds. I had no patience, wanted to scream or cry all the time. It does even out though, now I really don't notice any mood swings at all, just hot flashes and night sweats. I just finished 5 months only 55 more to go! Hang in there!
Sue

MaryAnn,

Welcome to our group. I'm not sure I could follow your plans about having OR on April 24th, Mammosite the beginning of May, and then immediately being on the road for 5 months (May-Sept).

After radiation was finished I had a flurry of medical contact. I finished Mammosite 2 months ago today, and since then I've seen both the radiation onc and the surgeon once, and have been to the medical onc's office twice. Also, I had to do daily dressing changes on the breast for weeks, and had contact with the rad onc's office re: general breast status (via phone). I started to blister a full month after the radiation was finished, had telephone contact with the rad onc nurse (re: skin care), and could come back for more dressings (and free samples of skin cream). I drove, but the bouncing definitely did not feel well.

When I had the needle locator (immediately pre-op) they gave me a bag of misc breast cancer items -- booklets, cancer info, etc, and an ultra soft, small "breast pillow" (maybe 5" x 8" ???). I used this under the seat belt, under the breast, when I slept, and tucked into the gauzy surgical bra I had to wear post-op. I think we all had the same strange surgical bra and at least some of us were given the little pillow.

From the radiation I was hit with "radiation exhaustion". It's not just being very tired, or really sleepy. It's an "all-the-way-to-the-bone, completely-drained-and-exhausted" feeling. Not fun. At least once a day I felt like someone hooked up a vacuum cleaner to me and sucked all the energy out. I physically could nto even sit up. It's like a fog suddenly rolling in, and you are surrounded by a mist that makes you weak and woozy -- lasts for hours and hours.

You might want to reconsider waiting a bit before leaving for that marvelous sounding trip. You would probably enjoy it more in a couple months, when you're feeling more like your usual self. I would love a trip like that!


Kelly: I'm on Femara, not tomox, so I can't say if your mood is drug related. I do know that I had a combination depression & anger about a month after the radiation. I wasn't back to normal, would have to create a new "normal" again, was scared, felt that no one understood, didn't have energy, could only work pt-time (so had only half my income)...... My emotional state was a backlash of emotions, not meds. Luckily it seems to have simmered down a lot.

Today is my BD. Yesterday I was 59, and today I am 60. Somehow it seems like I'm suddenly old, a cancer pt, haven't finished creating my new "normal", have insurance paperwork coming out my ears, and still have to finish IRS paperwork. Overwhelmed is a good word right now. Phooey.

Time to go to bed. Mornings always bring more energy and a better frame of mind.

Spring is here and with it comes a new freshness to the air.
We will all have a great spring, and a terrific summer!

Hanoria

Hi all,

sorry I've been out of touch... I have been on the road, teaching in NC at a missions conference and having a blast (though busy 18 hours a day). I'm still in NC, but checking email and this board again, finally. I have only a minute but thought I'd check in!

Hanoria, happy birthday. 60 is NOT old. Every time I go to the doc and they recommend radiation, they say "If you were 80 or 90 I'd say don't have radiation but you're YOUNG." (apparently 50-70 is still young)! Ok, I'll take it!

Tamoxifen sounds like a hairy experience. I'm still trying to decide... Kelly, glad you're feeling a bit better today!

OK, so did everyone get the same radiation fatigue after mammosite??? I'm being told that it doesn't always happen.. but I'd rather check with you all than believe the docs Wait, I think I've asked this TWO times already!! Well,iIt still scares me, especially since my insertion is scheduled for this Thursday and I start radiation next Monday. Kelly, I think you said that the fatigue lifted after the weekend of sleep. Still some pain, but the fatigue was better? Wow, can't believe I'm still really concerned about this...

and will I feel up to going to a series of lectures this weekend with the catheter just having been inserted on Thursday? I've cleared my sched but now there's this local conference I should go to... argh.

"new normal?" Yes, I remember that from hyst surgery two years ago. It hit me REALLY hard and I was not expecting it to be so bad. I'm still not happy with my "new normal" from that experience, and now I'm anticipating another "new normal", so I'm nervous.

Any words of advice?

And welcome Maryann! Just so you know, my lumpectomy was on Mar 27. The needle loc was tough but quick, but the surgery was a total breeze. I've had very little pain, but my DCIS was at 3:00 in the right breast, deep and close to the chest wall. I'll pray yours goes as easily as mine did even tho it's a different location!

I'm MUCH more concerned about radiation and tamox... I'm thankful that it's mammosite but still concerned... (can you all tell I'm a nervous ninny??)

Wendy

Wendy,
I did not experience any fatigue from the radiation nor any skin issues with it. I did develop after the catheter was removed a seroma, which is a collection of fluid in the area where the catheter was. It is slowy resolving, getting smaller, it will just take time. It makes the area sore but it's certainly tolerable. It's one of the possible side effects you can get. I did find the first several days painful after insertion so I took percoct every four hours. The first day after the procedure I considered having it removed, it was so uncomfortable. I did not do that, just figured it would get better which it did. I would reccomend more than just a local for the insertion, I don't know what you have planned. When I had it done I didn't know I had a choice. Everyone responds to it differently. I met another woman at the hospital who was having the mammosite radiation at the same time as me. We sat together prior to treatment each day and she said it didn't hurt or bother her at all! So it's hard to say how it will affect you. All we can do is tell how it affected us, and hope it's a breeze for you. I had pain meds which helped me through the first several days. Going twice a day to the hospital was tiring, but it was an "expected" tired from being at the hospital for a couple of hours twice a day, and the stress of having to go through treatment. So for me it was the pain of the catheter in the begining that was the issue. I would not have wanted to go anywhere. I think it's good that we can have such shortned radiation treatments that make it eaiser for us to recieve treatment, but we shouldn't swing too far in the other direction and think it's "nothing". I'm not trying to scare you, but to tell you how it was for me. I think knowledge is power and helps reduce some of the fear.
I'll be thinking of you on Thursday, saying a prayer that it all goes smoothly and easily! Keep us posted.
Alice

Hanoria, Alice, and Kelly, thank you!

I'm having IV sedation for the insertion tomorrow, and will use pain pills as needed. I'm still not comfortable with the thought of al this, but I am going through with it, and praying the discomfort and pain are manageable. Hanoria, I so appreciate your honesty in relating what you've been through... and Alice, you're right. I'd far rather have the information so I'm not surprised later.

I'll play it by ear this weekend... fortunately, this conference is local and low-key, and cheap, so I can decide at the last moment.

My pain since surgery is minimal, but the sense of bruising inside is still there so yes, I'm doing one-sided hugs I guess that might go on for awhile, huh?

We're finally home -- after a GREAT 10 days, but nevertheless happy to be home. I have a post-lumpectomy follow-up today, then tomorrow is the fateful day to start all the mammosite, so I won't be on here much til after pain and sedation meds wear off Thanks for all your input and prayers and I'll check back as soon as I'm able to let you know how it's going. Pain is not my friend so I'm praying lots

Blessings,
Wendy

Sue,
I'm so sorry to hear about your co-workers wife. That is so scary that she went that quick. I guess for her it was better, but harder for her family. It is a worry for all of us, and it's not easy. That's why when I tell people that I go onto this site every day, they kind of look at me funny. Like you said, no one knows but those of us who are living it. Thank God we have each other.
When everyone else gets tired of hearing about it, we can go online and know that we'll have a voice and won't feel like we have to "change the subject" for fear of making people uncomfortable.
Alice

Sue- I am so sorry to hear about your co-workers wife. You're right that is scary. I haven't been on the posts much because I have been dealing with illnes that I had before bc, but the physical and emotional stress has caused me to relapse. How am I not supposed to have stress? I see a therapist starting tomorrow.
Kelly- I read the posts almost everyday but don't always feel like posting, but I wanted you to know that I appreciate your sense of humor even when days are rough. I do believe that the Lord will not give us more than we can bear, so I fell that we bc sisters must be some sort of strong to endure.
Wendy- Good luck with your mammo insertion. Even though it is a little uncomfortable, its so worth having rads. over quickly. I'm afraid of what my health would have done had I not had the mammo rad as opposed to the 6 wks. I can imagine that I would be almost bedridden.

Can't remember who is planning on traveling, but good luck with that. I can only stand a bra for about 4 hours at a time and my ordeal was over in mid January.

On a positive note. My neurologist has sent my bloodwork to Mayo Clinic to do some more in depth testing. Have to wait at least another week to hear if they find anything. The weather here In N. Alabama is gorgeous. My tomato plants have blooms on them. Yeah! I love home grown tomatoes. That and peppers is all I felt like dealing with this year, but in-laws always have a big garden so I'm sure they'll share.

Just finished totaling up medical bills since bc and they totaled $74,000.00. Insurance only paid $35,000.00. I only owe $1500.00. Mostly from facility co-pays. I have new insurance that started in March that would not have had all of those co-pays, OH, well. Thankful for ins. none the less.

Do any of you have any fun summer plans? From the way it sounds, I may be the only one not working. I have filed for SSDI, was just turned done and met with lawyer Tues. that says by most standards I have a good case. Hope so.

Well, may not post again for a while unless I'm up to it, but know that I love reading all of your posts and am lurking around. Wishing you all well.

Jackie