Dis Breast Cancer Survivors Part III - GAGWTA!

[Pea-n-Me]

I wish I had a trip coming up!

lmp, I haven't seen hand written scripts in several years, but either on handwritten ones or electronic ones, I think writing on them would probably void them. I'd agree with Sha.

Off to make breakfast tonight! This morning we stood on a frozen baseball field for an hour and a half in 28 degree weather trying to landscape. Nobody remembered to bring the hot coffee, but worse, all we could smell was breakfast cooking at a restaurant across the street. It was torture. Later we had to run off but I've been wanting bf now all day.

GAGWTA

PS had my yearly MRI the other day. Gosh I hate those things. There is absolutely no way to climb up on that machine on all fours gracefully. Yuck.

 

[luvmarypoppins]

Good evening ladies

Fl Lisa - so what do you like at captains grille? We have just done the breakfast buffet. With hungry ds it was a bargain.

Laurie - That is so neat about your dd. Wow, I wish my ds had some type of scholarship, alas they are not super smart, but we have tried for something from dh work for d18. No news yet

Linda - Wow, those are some pretty cold temps!! Glad you are having breakfast for dinner. I am sure you all deserve it after your hard work. Hmm, reminds me of your cake quest

Has anyone heard from Laura? Just wondering how she was doing post surgery etc.

Well dh learned something from a co worker who's son teaches some classes at the state univ. He said lst they tell the best kids of acceptance, makes sense since 2 brains in ds class found out already, then they do the outright rejections, makes sense since other class mate got that letter, and then they do "everyone else". Those letters are going out...April lst!! So hopefully by next week end we will hear something. At least there is still some hope right now and not an outright rejection. We will keep praying.

O.K. My neighbor who works in the pharmacy was throwing out her old lawn chairs. I had ds18 "recycle" them into our yard. I figure with all their friends hanging out in the backyard in the summer they will be put to good use and if they end up trashed it will be fine with me.

I am looking at the vacation stuff. My head spins. I was mistaken about ds class trip. I think its May 24-28 and dh and I want to go the week before.

 

[snappy]

I wish I had a trip coming up!

lmp, I haven't seen hand written scripts in several years, but either on handwritten ones or electronic ones, I think writing on them would probably void them. I'd agree with Sha.

Off to make breakfast tonight! This morning we stood on a frozen baseball field for an hour and a half in 28 degree weather trying to landscape. Nobody remembered to bring the hot coffee, but worse, all we could smell was breakfast cooking at a restaurant across the street. It was torture. Later we had to run off but I've been wanting bf now all day.

GAGWTA

PS had my yearly MRI the other day. Gosh I hate those things. There is absolutely no way to climb up on that machine on all fours gracefully. Yuck.

Breakfast sounds great! WHEN ARE YOU SERVING?

Have you gotten results yet?

Do all MRI's require climbing up like that? I need one for my shoulder, I was thinking it would not be so involved, only expensive?

I had my annual mammogram yesterday. They did something this time that I did not see before, the readiologist wanted more magnification in one area. They had the breast films they took on the screen and showed me. It gave me the heebie jeebies. I sort of saw my life going before my eyes. It was over in an hour though since they were not busy at all on a Friday.


I have been called back for more views before but not with my breast up there is all its glory. I thought it actually looked pretty darned good.

I guess I must be over it as I did not think to post about it until I saw Linda's post about not being able to get up on the MRI machine gracefully.

One thing I have never been described as is graceful, even when not attempting to perch on an MRI machine.

Ok I just realized I have never seen an MRI machine. So its big?

Linda, we may have an extra room at Wyndham bonnet creek since we got a 3 bedroom and it may just be four of us, who knows? Wanna come in my suitcase?

 

[TruBlu]

Hey Girls!

I've not been around much lately, but I wanted to give you all an update on my mom...

Her mastectomy went really well, but about a month ago she developed a staff infection inside the surgery site. She was in the hospital for about a week. After it cleared up, she never felt any better. The oncologist was worried because she kept needing blood transfusions. He sent her in for a colonoscopy. About 20 cm in, her colon was almost completely blocked by a malignant colon cancer tumor. They wouldn't let her leave the hospital. It took them a couple of days to get her blood counts high enough for surgery, but eventually they were able to remove the tumor.

Unfortunately, they found a spot on her spleen, too. They fear that could be spread from the breast cancer, but they are focused on the colon cancer right now. She had 5 hot lymph nodes.

She starts chemo for the colon cancer in 2 weeks. They said they will watch the spleen and deal with it later. Unfortunately, the chemo wont work for both cancers. The GREAT news is that they expect this chemo to make her less sick than the other stuff did.

She tough, and she's fighting!

BUT - I have a question for you guys.... They are going to do genetic testing on her because her sister had some pre-cancerous breast cancer cells when she had a biopsy. Have any of you had this done? The doc said that if she came back positive my sister and I would both need to be tested. What will that tell us?

We also both have to get colonoscopys (sp?) ASAP. I'm going to see my primary care doc this week to get it all set-up. yay

-Tracey

 

[a1tinkfans]

TruBlu:
Hi
I have not been on this thread, am a cancer survivor myself. Just wanted to say that I had to have genetic counseling and genetic testing after my breast cancer and found out that I did not carry a gene for it and that was a relief since I have siblings that could have also carried it or passed it on to my nieces and nephew...
anyhoo, just wanted to wish your mom luck and say sorry she is dealing with all of this. I wish her well!!!

 

[TruBlu]

TruBlu:
Hi
I have not been on this thread, am a cancer survivor myself. Just wanted to say that I had to have genetic counseling and genetic testing after my breast cancer and found out that I did not carry a gene for it and that was a relief since I have siblings that could have also carried it or passed it on to my nieces and nephew...
anyhoo, just wanted to wish your mom luck and say sorry she is dealing with all of this. I wish her well!!!

Thank you!

 

[jackskellingtonsgirl]

GAGWTA, Ladies! Just a quick fly by to tell you all I am thinking of you!

TruBlu, I am so sorry to hear all that your mom is going through. Many, many good thoughts for her, and for you!!

 

[snappy]

TruBlu, if your mom is tested, and has the BRAC 1 and or BRAC 2 gene, then your chances of having breast cancer and ovarian cancer are very high.

If she does not carry the gene, you have a completely different (and lower) but elevated risk, because you have a first degree relative with it.

Before having the test you should receive counseling.

The colonoscopy is a good test to have once you are age 50 or above, or earlier if a family member has had colon cancer.

One of our posters here, Laura, gave me a link once with suggestions for both techniques and products to make that test (colonoscopy) a little easier (she has had many of those tests over the years). I used many of the suggestions and I felt like I sailed through the colonoscopy I had in 2006.

I will try and look for that link and post it for you.

One of the mothers of the girls at DD14's school had the genetic testing for breast cancer several years ago. She was negative. She was told that if she had tested positive, that her relatives should also be tested. The testing is less expensive for the relatives because the gene that the mother had would be targeted in her relatives, so that the testing would not be as broad in spectrum, if that makes sense.

This type of testing has been around for awhile, and it is a highly regarded procedure. Some women who test positive will go ahead and get prophalactic mastectomies or have their ovaries removed even though they do not have cancer as a precaution since their risk is so high. I think health insurance for the test can sometimes be problematic.

It is a useful type of testing but one does not enter into it lightly. Again, please try and have some genetic counseling before testing.

I am very sorry your mom has undergone so many obstacles. I was aware of the connection between breast and ovarian cancer, not as much with breast and colon.

I hope this round of chemo is easier on your mom so she can continue to be strong when they go to attack the spot on her spleen.

I am sorry I don't have more info. The only other thing I can think of is a website that Laura shared with us a few years back called facingourrisk.org.

Many people with the BRAC genes or people who have been tested post there. It is a little scary but I read much helpful info there when I was trying to decide on reconstruction. The site had many caring individuals who posted there when I was on it in 2006.

Please let us know how this progresses and give your mom my very best.

Laurie

 

[NHAnn]

Snappy-- The color verdict: Sparkling Lake. It is greenish, with blue in it. Looks blue next to sage or grass green tones, but looks green next to navy or true blues. It's lovely. DH has more than half the room done I found bedding at JCPenney that's just perfect with a sale and coupon, called Seascapes...all the aqua, blue green tones as well as a tan in it which means I do not have to replace the shiny "linen" colored (sort of pale gold/tan) lined roman shades in the windows Just PERFECT and I found a lamp with the palest aqua green shade in TJ Maxx, truly a no-brainer for the top of the dresser.

Tracey-- I am so sorry your mom is having such a hard time, and I know it takes a toll on you. Your head must be spinning. I agree with Laurie that genetic testing should be accompanied by personal counseling. Please do keep us posted.

wdw4us..../home projects are a reinforcement that you ARE a survivor....so when you are physically up to it, GO FOR IT!!

Linda, I will have an MRI this summer...my first

GAGWTA!!!

 

[Sha]

Sha - Your trip plans seem to be coming along well. I barely plan when we go to WDW anymore - we just wing it.

I dont do a lot of planning. Just on the things that are hard to get like Tea and Le Cellier. The other planning I am doing is just some things for friends to make it fun. Little gift things like individual margarita glasses with names on them that are pool safe. I dont remember if Disney has any. I will get little rings for drinks and do names on those to identify them.

Hey Girls!

I've not been around much lately, but I wanted to give you all an update on my mom...

Her mastectomy went really well, but about a month ago she developed a staff infection inside the surgery site. She was in the hospital for about a week. After it cleared up, she never felt any better. The oncologist was worried because she kept needing blood transfusions. He sent her in for a colonoscopy. About 20 cm in, her colon was almost completely blocked by a malignant colon cancer tumor. They wouldn't let her leave the hospital. It took them a couple of days to get her blood counts high enough for surgery, but eventually they were able to remove the tumor.

Unfortunately, they found a spot on her spleen, too. They fear that could be spread from the breast cancer, but they are focused on the colon cancer right now. She had 5 hot lymph nodes.

She starts chemo for the colon cancer in 2 weeks. They said they will watch the spleen and deal with it later. Unfortunately, the chemo wont work for both cancers. The GREAT news is that they expect this chemo to make her less sick than the other stuff did.

She tough, and she's fighting!

BUT - I have a question for you guys.... They are going to do genetic testing on her because her sister had some pre-cancerous breast cancer cells when she had a biopsy. Have any of you had this done? The doc said that if she came back positive my sister and I would both need to be tested. What will that tell us?

We also both have to get colonoscopys (sp?) ASAP. I'm going to see my primary care doc this week to get it all set-up. yay

-Tracey

Tracey many thoughts and prayers for your mom. Maybe as inconvienent and scary as the staff infection was, it was a good thing to find the colon cancer.

Havent gotten BRAC done yet, but I will one day. Being my mom and my aunt have had 2 different types, I would like to know.

 

[TruBlu]

I was aware of the connection between breast and ovarian cancer, not as much with breast and colon.

They are actually calling them 2 primary cancers. They don't think they are linked. The doc said that was much better than if it had been metastasis.

 

[TruBlu]

Thank you all so much for the wonderful advice - especially about me getting counseling. I am having a very hard time dealing with my mom having a second cancer. I can't imagine me being depressed, but I think I might be. I cry all the time and don't feel like doing anything. I force myself to smile thru it. I think I really need to talk to someone. But, I feel selfish for thinking of getting help for myself when I should be helping my mom.

 

[Pea-n-Me]

Shoot, I wrote out a long post for Tracey then lost it when I closed a window. I'm sorry to hear about your mother. I've had testing done. For me, the decision was easier because I've already had cancer and so insurability is already an issue for me. For you, you need to weigh the benefits vs risk of knowing, ie the ability to take proactive measures if you're postive, vs the insurability factor if you're positive. I'd make sure your insurance is all in order before having testing done, especially life insurance. But as they explained it to me, for BC there is screening; for ovarian ca there isn't. So if you are positive, you'd want to know. I had counseling beforehand, but based on 3 generations of my family history, they were almost certain it was going to be negative, which it was. I suppose I would have felt pretty certain just with that information, but I decided to go all the way to be absolutely sure. I was negative. Laurabelle used to recommend this site: www.facingourrisk.com . Hopefully it'll be helpful to you.

Ann, color sounds awesome. I'm picking out colors, too. DD and DS both picked out colors for their rooms (lime green, slate blue), we're picking out our bedroom (some form of taupe), we're doing the outside of the house (considering something different this time, maybe red or yellow, not sure yet) and then we'll be needing to get the sunroom (completely unsure about that right now) and family room (some form of gray as we are going with a barn theme, lol). I'm overwhelmed. We had a heck of a time getting the permit for the sunroom, but it finally went through and we should be starting any day. I can't wait until it's done.

Laurie, thanks so much for the invite. You're too funny. I'd love to come! Right now it's more a time issue than anything. We will make it back eventually. Actually, I've been thinking what I really need is a beach type vacation. One where I didn't have to do anything at all. That might be next. (I mentioned that to our friends we had over for breakfast tonight and she said she never thought she'd see the day we'd rather go somewhere other than Disney, lol). Oh yes, we had scrambled eggs, bacon, Mickey Mouse pancakes (they brought the "Mickey Mold"), warm cinammon buns, home fries, and fruit salad. It was sooo good!

As for the MRI, the breast MRI is different than a head or other type of MRI where you lay on your back. There are (you might remember me talking about this before) two "holes" in the table you have to get your, ahem, bosoms into. This while your gown is open in the front. So you climb up on the table (the girls there laughed and told me I got extra points for gracefulness, lol) on all fours, then aim down to the holes and slide em in. Your arms stay above your head on pillows and your head rests on a swim mask type device with a mirror inside that shows you the front of the machine. Then they either give you headphones with music or earplugs (I prefer the latter) and they put a ball in your hand that you can squeeze in case you need anything. You have an IV in your arm attached to dye syringes that go in about 3/4 of the way through the test (which makes me feel strange). They talk to you to tell you what's going on but between the earplugs and getting to be nearly deaf as a haddock, I can't hear a word they say. So you just lie there really still for about 45 mins. I was trying to meditate like I used to. Still nervous anyway. Uggh. Like I said, I hate those things! I don't have the results yet. This time of year I always get nervous.

lmp, funny you rememered the cake story. That still cracks me up. I heard my BILs voice in a dream recently. It was so weird. I forgot to scold him for that, I'll have to remember next time.

Have a good night, everyone.

 

[snappy]

I am absolutely loving reading all the posts this morning. Y'all are great!!

Thanks for posting for TruBlu, Sha and Linda. I knew you would hav some sage advice.

Your post about the provi dence of having the staff infection which lead to the timely detection ofthe tumor was perfect.

And Linda, your guidance about life insurance so important.

 

[Pea-n-Me]

Your post about the provi dence of having the staff infection which lead to the timely detection ofthe tumor was perfect.

Can't take credit for that - that was Sha. BTW, Sha, so glad to "see" you more. I don't think it's like this in FL, but around here, winter really does a number on your psyche. It's just so loooooooong and coooooooooold. I really love this time of year when a little warm weather's beginning to infiltrate and the promise of spring is around the corner. It always makes me feel so much better and energetic. I got out photo shooting a little bit in the last week and that felt good, too. You'll be happy to know I bought two new lenses last week, the ones I've been wanting forever (used). So that made me happy, too. I'm thinking of upgrading my camera as well. How are things going for you?

 

[wdw4us2]

Tracey - As others have mentioned, there are many considerations before making the decision to have the genetic/BRAC testing done.

When I was diagnosed with breast cancer last June the oncologist asked if I wanted to have the test. Since my mother had ovarian cancer and later died of bladder cancer, my DH and I decided I should have the tests. Unfortunately, I tested positive for BRAC1 which resulted in a different course of treatment than the doctors had originally prescribed for me. The oncologist told me my siblings should be tested as well as my children. She said there was a 50/50 chance of them testing positive. Of my three siblings the oldest, my sister, tested negative while my two brothers (one older, one younger) were positive. My younger brother's daughter was tested and she is also positive. My daughter will be tested this Summer while she is home from college. I didn't want her to be tested sooner as she has enough on her plate dealing with my illness as well as being a freshman in college. My son will be tested in a few years.

When I talked with my daughter about the testing, I told her I wouldn't have done anything differently (had I known then what I know now) as far as my life choices were concerned. The only thing I would have done was to have the bi-lateral mastectomy and my ovaries removed after I was done nursing my son as a preventive measure. I didn't have any counseling other than what the oncologist explained to me. The prognosis for my brothers and my niece are good, they just need to have preventative screenings done at a younger age and more often than most people do. Men need to be tested for testicular, colon as well as breast cancer when they have the positive gene mutation. For women who test positive, mammograms start around age 25 and are yearly.

I hope I have been of some help to you. You and your mother are in my prayers.

 

[Sha]

Can't take credit for that - that was Sha. BTW, Sha, so glad to "see" you more. I don't think it's like this in FL, but around here, winter really does a number on your psyche. It's just so loooooooong and coooooooooold. I really love this time of year when a little warm weather's beginning to infiltrate and the promise of spring is around the corner. It always makes me feel so much better and energetic. I got out photo shooting a little bit in the last week and that felt good, too. You'll be happy to know I bought two new lenses last week, the ones I've been wanting forever (used). So that made me happy, too. I'm thinking of upgrading my camera as well. How are things going for you?

I love winter... I love all the seasons really. It was colder and all here this year too, but I dont mind that. I think the accident was really the big cause. Then with Christmas, the traditions I love werent done at all. Had a small tree, not much in gifts though. I normally do a lot for others then. The baking... luminaries on Christmas Eve. Going to Disney for the Candlelight Processional. Couldnt find my favorite Christmas CD. The guy wasnt working out... still isnt. Not sure what I want to do with that. Just cant seem to get it together to go forward. And lots of thoughts of my friend Jen. Her birthday is coming up, so she has been on my mind even more.

I need to work on photos before I take a lot more. I want to get a new lens but that has to wait. Maybe 2. One is more wide angle but not fisheye (those make my eyes hurt for some reason). I have a photo class coming up. That might help and a couple more trips to WDW this coming month.

Im trying. All one can do. Hoping to get into a better routine for some things and see too if that helps. I miss my smile. I feel like its forced a lot of the time. But I have seen it a bit more here and there. Like at WDW with the Thumper garden statue. I am going to get one fo the backyard.... maybe 2?

 

[Pea-n-Me]

Well then I'll be expecting to see you on the POD and Assignment threads more next month. PS next lens for me is wide, too, I think. Fisheye's kinda cool.

 

[Pea-n-Me]

Tracey - As others have mentioned, there are many considerations before making the decision to have the genetic/BRAC testing done.

When I was diagnosed with breast cancer last June the oncologist asked if I wanted to have the test. Since my mother had ovarian cancer and later died of bladder cancer, my DH and I decided I should have the tests. Unfortunately, I tested positive for BRAC1 which resulted in a different course of treatment than the doctors had originally prescribed for me. The oncologist told me my siblings should be tested as well as my children. She said there was a 50/50 chance of them testing positive. Of my three siblings the oldest, my sister, tested negative while my two brothers (one older, one younger) were positive. My younger brother's daughter was tested and she is also positive. My daughter will be tested this Summer while she is home from college. I didn't want her to be tested sooner as she has enough on her plate dealing with my illness as well as being a freshman in college. My son will be tested in a few years.

When I talked with my daughter about the testing, I told her I wouldn't have done anything differently (had I known then what I know now) as far as my life choices were concerned. The only thing I would have done was to have the bi-lateral mastectomy and my ovaries removed after I was done nursing my son as a preventive measure. I didn't have any counseling other than what the oncologist explained to me. The prognosis for my brothers and my niece are good, they just need to have preventative screenings done at a younger age and more often than most people do. Men need to be tested for testicular, colon as well as breast cancer when they have the positive gene mutation. For women who test positive, mammograms start around age 25 and are yearly.

Interesting! How were your brothers with that?

A questions:

Unfortunately, I tested positive for BRAC1 which resulted in a different course of treatment than the doctors had originally prescribed for me.

How did the treatment course differ? Just curious and would be interested to hear more. Thanks for sharing.

 

[wdw4us2]

Interesting! How were your brothers with that?

My brothers always knew cancer was a possibility because there was a lot of it on our mother's side of the family. Since they are both over 45, they felt it was better to know and take proactive measures rather than sit around and wait and see what would happen. As for my younger brother and his daughter's diagnosis, he doesn't have custody of her (she's 18) but he did impress upon her how important it will be to follow the oncologist's recommendations when she turns 25.

A questions:


How did the treatment course differ? Just curious and would be interested to hear more. Thanks for sharing.

Originally, I was scheduled to have a lumpectomy with some follow up radiation. After the diagnosis, I then had a bi-lateral mastectomy followed by chemo and I started radiation a week ago. Oddly enough, when I was first diagnosed I told the surgeon and the oncologist I wanted the bi-lateral mastectomy and they told me it wasn't necessary. It turns out there was a tiny malignant tumor on the right side that did not show up on the mammogram or any other pre-op test I had. I guess I just had a feeling. . .