Dis Breast Cancer Survivors Part II -GAGWTA!

[Aliceacc]

I had a doctor's appointment this afternoon.

Turns out I'll need radiation. The tumor was so large (10 cm) and so close to the chestbone that they're a little concerned that it will spread or recur.

And, needless to say, the first visit to get it all organized is....

Christmas Eve!!!!

It'a an 8:30 am appointment, and he said I could expect it to go about an hour.

He did say that, since my type of problem was so rare, he had contacted "2 of the top guys in the country" and they all concur but I was absolutely free to get another opinion. I already have 3-- I'm not sure how much good another would do.

Once I get that initial visit over, it will be 28 consecutive weekday sessions. He said I could expect to spend half an hour each time, of which about 5 minutes would be the actualy procedure.

As far as side effects go: he said I could expect some fatigue. I asked how much -- like pregnancy fatigue??--and he said it was like spending a long day at the beach. OK, that I can live with. And he said the breast may get what appears to be a mild sunburn. I'm fair skinned enough that I've gotten my share of burns-- though I've never sunbathed topless, so that area has been well protected.

His final comment (aside from the "please call with any questions" stuff) was this: I promise you, this is NOT horrible. Of the 20 new patients I get each month, 19 will wish they were you.


So now that I've had a good cry, I'm determined not to feel TOO sorry for myself.

 

[drivencrazy]

Hi all........ I have a good friend (wish we were closer...) but she is in sugery right now... I am waiting an update. She found out about a month ago that she has breast cancer and today is the day that she went in... the first part went well and was rather quick... the second part was started about 3.5 hours ago and like I said, we are waiting to see how that one went as well.

She will be in the hospital for a few days before going home where she will be for about 6 weeks before she can even think about going back to work.

My question to all you wonderful people on here... what can I do for her now? Her sister (who I am really close to) has set up meals to be delivered to their home when she goes home! So I plan on setting up a roast and taking it over so they can cook it up that night (when it's my night)...

What other things would be good to take over for her and her family? They do have quite a bit of family that live around, so I do know that they will be taken care of, but I also want to let them know that they mean so much to me and that I care.

She is 42 years old and has 2 wonderful girls (12 and 13 years old) and a wonderful husband. Like I said, I wish I were closer with them, and do plan on growing our friendship. I would like to know what would be most helpful for this time and what might be getting over looked!

Thanks!

 

[grammynelliebelle]

Alice, You are in my thoughts and prayers as you face this. Grammy (Carol)

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Linda- Thinking about you...wondering how are you? Do you have power?

Aliceacc- I'm sorry you have to start rads on Christmas Eve. I didn't have rads, but others here have and I'm sure they'll have lots of advice for counteracting an possible side effects. It's ok to cry, good even. I know it's yet another hurdle that you wish you didn't have to jump...but you will. Let's kick some BC butt for Christmas!

drivencrazy- I'm sorry your friend has been diagnosed. It's really sweet of you to want to help. I felt some of the best things were the simplest. If you want to bring her gifts, comfort items are nice, but steer clear of scented items. Non-scented lotion, soft socks, hard candies or mints. Be available, listen to her cues, treat her normally... laugh with her!

Melissa- Thanks! It's warm here! Crazy.

Laurie- Thanks! I guess all those discounts will be another goal for the next decade. I think your dream sounds so wonderful and realistic...do you think you would ever pursue it?

Carol-Thanks! I have a whole new appreciation for growing old, and plans to go with it! Hubby and I were saying how we hate winter. I would love to do what you are doing! We have stayed in condos in FL and really feel like we have moved in, but not nearly as long as you are.

I've been lurking around the DCL boards, here and other cruise forums. Just reading up.

Last night my UC started to rear it's ugly head as I'm tapering off the steroids. Typical. I have to email my dr. this morning. He mentioned some alternative type stuff that I could try that hopefully will help. I was hoping not to have to deal with any of this until after Christmas.

 

[grammynelliebelle]

GAGWTA! and Good morning to all. Today is my MRI (10:30) and I am a little nervous. A little bit about the actual proceedure, but also as to what is seen or not seen. They said you can bring a CD and I went through a few last night. I think I am going to bring Classic Disney! I also have some Christian praise music that I like and will bring. More latter. Carol (Grammy)

 

[snappy]

Alice, I did not have rads either, but others here have. I am sure they will weigh in.

One of my co workers was diagnosed same time, same surgeon, same hospital. Her non-invasive tumor was deep on her chest wall too so she had rads. She is doing great these days, such a joy not to mention inspiration to work with. She also suffers from a progressive eye disease which has robbed her of almost all of her ability to see. You should see the consumers that come in when she does an assessment for them on her computer, showing them all the software and devices she uses that makes her so productive.

It is wonderful to behold!

Carol, good luck with the MRI. I never had one of those either. I do think it the right diagnostic test for you with your situation of the disappearing calcifications. They scheduled my mom for one back in October before her mastectomy as the calcifications she had extended very far beyond what was visible on the mammogram alone. I liked my Michael W. Smith Celebration cd during my waiting room period.

Those calcifications can be sneaky little buggers.

Luckily mom's cancer was non-invasive as well.

Size does not seem to matter much for long term survival when you are dealing with non-invasive. It does come it to play in whether or not a lumpectomy will get it all though.

Post later afterward. Do you have someone going with you?

I too was wondering who is without power. That winter storm was horrible. I can see why you can't wait until the last minute to Christmas shop up there.

Laura, I would love to live my dream. Not sure if it could work, but you know it is kind of like buying DVC at our ages. We now have a goal to stay healthy for 34 more years. Having a goal like living my dream is the same thing. You have to aspire high.

Sorry about your UC. I love that you can email your doc.

Driven crazy, how wonderful that you are part of your friend's network during her time of need. A nice basket with mints, gum, some light smelling good hand cream, a good book, a journal, a tranquil ocean sounds cd, any of that type of stuff is good.

Offer to take her kids to a movie or shopping. Do some chore. All good ideas.

Please let us know how she makes out.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!!

Laura - I am sorry the UC is acting up! Hopefully you are getting some good tips for your cruise! Congrats on 10 years!

Grammy - Good luck today!!

Aliceacc - My mom goes the 19th to get everything set up for her radiation. Hopefully you will both get through without any severe side effects!

Maureen - Congrats on one year! How are you feeling? Have you finished up all of the antibiotic treatments?

Mom is doing OK. She said the neuropathy is no better, no worse. She dropped a can on her toe, which they will have to watch. Her toes were already not doing very well. Her counts in her blood work have been fine, so that's a good thing.

I hope you are all well and that your holiday preparations are falling into place! DH convinced me to put our tree up (against my better judgement) so we'll see how long it takes for the cats to knock it over or chew through the lights.

 

[gemjoy]

Hi girls... sorry, I introduced myself about a month ago and explained that my Dr. felt a lump in my right breast and scheduled a mammo and ultrasound. I was then referred to a surgeon... which I met with on the 8th. Yesterday I had a core biopsy. What I know is that it is a solid 1cm tumor and it is oval in shape with a mostly smooth edge..... I expected the shot that numbs the site to hurt and it didn't hurt at all! The "staple gun" sounding tool is a bit intimidating.... and I'm a little sore. They marked the tumor with something so that they could see it easily on mammogram... and they did a mammo to make sure it could be spotted. Now I'm waiting - but may know as soon as tomorrow. If any of you have any info or comments on what I've shared I would certainly welcome it!! Thanks again for listening!

 

[jackskellingtonsgirl]

Hi girls... sorry, I introduced myself about a month ago and explained that my Dr. felt a lump in my right breast and scheduled a mammo and ultrasound. I was then referred to a surgeon... which I met with on the 8th. Yesterday I had a core biopsy. What I know is that it is a solid 1cm tumor and it is oval in shape with a mostly smooth edge..... I expected the shot that numbs the site to hurt and it didn't hurt at all! The "staple gun" sounding tool is a bit intimidating.... and I'm a little sore. They marked the tumor with something so that they could see it easily on mammogram... and they did a mammo to make sure it could be spotted. Now I'm waiting - but may know as soon as tomorrow. If any of you have any info or comments on what I've shared I would certainly welcome it!! Thanks again for listening!

Good luck!!

 

[grammynelliebelle]

Hi all. Back from the MRI around noon. It wasn't bad at all. I absolutely did not feel closed in. The machine they used was called a large bore MRI. It wasn't an open MRI, but instead of being a long narrow tube it was short and wide. (sort of like me!) Anyway, you lay on your stomach and your head is supported the way it is on a massage table. there are two holes for your breasts to go through, but they are not compressed. Knees were supported by pillows. Arms straight out above your head. You get an IV for contrast that they do midway through the proceedure. Most important thing, you must stay absolutely still. You get to hold a button thingy that you can push if you have any problems. The music helped tremendously.(I went with the Praise Music) It took about 40 minutes total and the disc is ready for pick up. I am going to wait until the report is ready as well. At this point I feel much calmer, and will wait to hear from the surgeon when he gets the info. One way or the other, I am not going to do anything in NJ, but get down to Moffitt and have everthing reviewed. I hope the description of how it went for me might help someone who needs to have one. Of course, each facility and person is different, but at least this is general info. GAGWTA from your "information seeker" Grammy

 

[MerryPoppins]

Gemjoy, that sounds very much like how my biopsy went. However, they told me right away they were sure it was cancer. Hang in there. Hope you'll have good news tomorrow.

That MRI sounds like it's easier than the old kind. I've never had one. Crossing my fingers for good results. You hang in there too.

I agree that meals, doing something with the kids, helping with errands (grocery shopping or getting the kids where they need to be) are all great ideas for your friend, drivencrazy. I've had several friends swear by hard lemon drops (the old fashioned kind) for battling the metalic taste during chemo. Even just a phone call or note to let her know you're thinking of her would be appreciated.

 

[Pea-n-Me]

Laura, are you up? I'm glad you're having fun planning your trip. We had no ice here, I just got busy with work and holiday prep. Congratulations on your Cancerversary! (Others, too. I go by when I found the lump.)

drivencrazy, thanks for being so thoughtful. You've gotten good ideas. I think, too, just being there to listen if she wants to talk/cry, etc, is really helpful. Not everyone wants to do that, but if you do, it's nice to have someone who will listen. You might also seek out a cancer support center in her area in case she'd like to connect with others going through the same thing.

grammy, I'm glad the MRI went well. You did a good job of describing one. I have them yearly now and they don't bother me. Let us know how things are going.

gemjoy, oval with smooth shape is good. Likely a node or fibroadenoma. I had one, too. Cancer is ugly - nothing round or smooth about it. Let us know when you hear results.

Alicea, I had radiation. It's inconvenient and does make you tired, but not bad overall, especially in light of how it helps us. I got to really like the staff there, they were great. BTW, I loved your doc's final comment. What a great way to help keep things in perspective.

GAGWTA to everyone else.

I was upset over a story I heard about a fellow BC survivor losing her fight, suddenly, last week. She was only in her 30's, and left behind two children. Ironically, my kids' teacher told me the story in support of taking my kids out of school for a few days. It was her friend.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Linda- Thanks! I just had to check on you...glad you're (just) busy! It always hurts to hear of another sista dying of bc, especially leaving behind little ones...

Carol- I also get annual breast MRIs. I just go to my happy place and it's fine. I hope you get your results back soon.

Elizabeth- Thanks! The neuropathy takes a while to start responding after treatment ends, give it time.

gemjoy- I agree with Linda, the shape of your mass sounds B9. Looking forward to reading your good news soon!

I'm back up on my higher steroid dose. GI doc recommended some alt. probiotics but they are way too $$$$$! My nurse is going to see if she can get me samples. Just want to be left alone to enjoy Christmas!

 

[luvmarypoppins]

Hi everyone, would it be o.k. if I just tag along or lurk sometimes.

I know this is the bc thread, but I dont think there is a thread for people with other kinds of cancer.

I have read a little or this and it sounds encouraging since I have just been diagnosed with cancer too. I will know what type of cancer I have on friday. I do know I am having 6-8 hours of surgery Jan. 8 and then radiation. We are talking to the dr. more on Friday. and going for the pre op tests.

I did have a question for alice. Since you live on LI - did anyone mention the sattelite place they have in Commack for Sloan K,? I am going to Stony Brook but am keeping this in the back of my mind.

Wishing you all blessings.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Linda - How sad for those children to lose their mom!
I am glad your radiation wasn't too bad. I am hoping Mom is able to tolerate the doses OK. She said they have a new machine that is supposed to be state of the art, so we'll see!

Carol - I hope your MRI results provide the info you need to move forward!

Laura - I hope you are able to get some samples so you can "Try before you buy". It would be bad to spend a lot of money on something that doesn't work.

luvmarypoppins - Welcome! I am sorry to hear of your diagnosis! Best of luck on Friday with your tests and consults!

 

[Aliceacc]

Hi everyone, would it be o.k. if I just tag along or lurk sometimes.

I know this is the bc thread, but I dont think there is a thread for people with other kinds of cancer.

I have read a little or this and it sounds encouraging since I have just been diagnosed with cancer too. I will know what type of cancer I have on friday. I do know I am having 6-8 hours of surgery Jan. 8 and then radiation. We are talking to the dr. more on Friday. and going for the pre op tests.

I did have a question for alice. Since you live on LI - did anyone mention the sattelite place they have in Commack for Sloan K,? I am going to Stony Brook but am keeping this in the back of my mind.

Wishing you all blessings.

My next door neighbor (whose mastectomy was a month before mine... gotta LOVE Long Island) goes there.

My doctors work out of either Winthrop or Northshore. But Denise has had wonderful things to say about the Sloane satelite.

 

[snappy]

Hi everyone, would it be o.k. if I just tag along or lurk sometimes.

I know this is the bc thread, but I dont think there is a thread for people with other kinds of cancer.

I have read a little or this and it sounds encouraging since I have just been diagnosed with cancer too. I will know what type of cancer I have on friday. I do know I am having 6-8 hours of surgery Jan. 8 and then radiation. We are talking to the dr. more on Friday. and going for the pre op tests.

I did have a question for alice. Since you live on LI - did anyone mention the sattelite place they have in Commack for Sloan K,? I am going to Stony Brook but am keeping this in the back of my mind.

Wishing you all blessings.

I am very glad you want to join us. all are welcome.

I am sorry for the reason though you are joining us. I hope you get all the answers you need on Friday. This is a very hard time of the year to be facing all of this.

Please feel welcome to post here anytime. We love new comers. Please let us know how Friday goes.

Laurie

 

[Aliceacc]

Hi everyone, would it be o.k. if I just tag along or lurk sometimes.

I know this is the bc thread, but I dont think there is a thread for people with other kinds of cancer.

I have read a little or this and it sounds encouraging since I have just been diagnosed with cancer too. I will know what type of cancer I have on friday. I do know I am having 6-8 hours of surgery Jan. 8 and then radiation. We are talking to the dr. more on Friday. and going for the pre op tests.

I did have a question for alice. Since you live on LI - did anyone mention the sattelite place they have in Commack for Sloan K,? I am going to Stony Brook but am keeping this in the back of my mind.

Wishing you all blessings.

A few suggestions:
- Bring along a notebook and a pen. Take notes. An hour after you leave, you won't be able to remember what the doctor said.

- I would hesitate to run to the computer to look stuff up. There's just such a wealth of information there, but only a tiny bit of it will apply to you. Talk to your doctors, and ask them the questions.

- Once you know what you're dealing with, let the crew here know. They'll have some of the practical answers you'll need.

-It's OK to cry. (Ask my assistant principal. I had a total meltdown in his office Monday morning talking about the radiation. He was a total sweetie.) People will understandably give you lots of slack... don't be afraid to take it.

Feel free to PM me if I can be of any help!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

luvmarypoppins I'm so glad you posted! All are welcome here. The beast sucks in every way, shape and form.I'm sorry to read you are going through this, especially at this time of year. If you read back a page you'll see that I was diagnosed 10 yrs ago Monday. I don't live in your area, but did start out in a community hospital where I received my diagnosis then moved to a large university cancer center for my treatment. It was the best move I could have made. I am glad you have a satellite of MSK near you. I'm sure you will receive the most current treatment there, and it's probably easier to get an appt. there than the NYC location. Please keep posting. You are in my thoughts and prayers.

My nurse emailed back that she does have samples of a much cheaper pill to try. She can give me a 10 day supply!

 

[Pea-n-Me]

Glad you found your way over, luvmarypoppins.

GAGWTA