Dis Breast Cancer Survivors Part III - GAGWTA!

[snappy]

Glad to be of service, KJ. Thanks for the reply. I do so get carried away sometimes with my posting. We used to have a poster who would visit once in a while with encouragement-Pop daddy who would call the long posts sexxy posts. I seem to have more than my fair share of those.

However, I realized at the support group meetings I used to go to that not all of the survivors had been given the info. Since there was some discussion about lymphedema and sleeves here, I just chimed in. I will check my little booklet and see if I covered everything.

I would be happy to fax or scan and email the stuff I have to anyone interested.

I am kind of an info junkie, not just about BC. In my work life I have had to do a lot of analytical work and I guess I am sort of a researcher by nature.
Some research is way more fun though, like which group is playing at which stage or where to find Crawfish bisque at Jazzfest, or options for our Disney stays for that matter.

We haven't been yet although I was in New Orleans both Thursday night through Friday morning and Saturday night. We are shooting for next Sunday now.

Hoping for good weather and good times.

I think I spend way to much time on the internet. I was way over the top figuring out stuff for my reconstruction in 2006. I think I actually knew more than I needed to.

 

[Pea-n-Me]

I have a mild case of lymphedema in my arm and hand. They took out 8 nodes total. My understanding is that the surgery cuts the lymph channels and then the radiation further obliterates them, therefore fluid can't find it's way back up from your arm, it needs to be re-taught how. Which is why prescribed exercises at the beginning are important and keeping an eye out for development of any problems.

I found out about mine after a WDW about 9 months after treatment. I figured out that flying affected it as did salty foods. I underwent PT for a couple of months and now have to wear a sleeve when I fly as well as watch what I eat, especially when on vacation. (Just home from a trip this weekend and I can feel I have a little swelling today.)

The reason infections can be a problem when you have lymphedema is that when there is fluid in your arm, helper cells can't get to the site as well as they can when fluid's not there so it essentially lessens your own immunity, which is why it's necessary to try to avoid cuts, burns, scrapes, etc. I always worry when I cut my cuticles as I'm great for nicks (but I make sure my hand is clean and the instrument is sterilized first). I haven't had any major infections, thankfully. Other things to know are that you shouldn't have blood drawn on that side nor should you have your blood pressure taken on that side, either.

Hope everyone's well. Had a nice trip. Baseball tournament and a hotel full of kids. I'm tired. lol.

 

[Sha]

Mom has had lymphedema problems but nothing severe. I sent her to Sally my massage person and she takes care of it with lymphedema massage. She does some with me too just and had me quit wearing wire bras. They are bad about blocking the lymph circulation.

 

[KJ Luvs Pluto]

More good info. Thanks Pea and Sha.

I'll have to be very careful around the shrub roses. I'm always getting scratched up good when working around those. I do wear gloves when gardening (but flowers and veggies) but I'm usually in short sleeves. I'll probably ask about flying and see if I need to be a sleeve for that and also about the exercises. That's a good idea. It sounds like it's better to get ahead of this rather than wait until it's a big problem. I had chemo in that arm and they take blood out of that arm since the other one has the permanent clots in the veins from the chemo and the vein for drawing blood is not available because of a tendon being wrapped around it. Well - I'm still fairly hairless so they could still take blood from the veins in my head .

 

[luvmarypoppins]

Good morning ladies

Fl Lisa - so sorry to hear about your truck. Cant believe people could be so brazen!! Is there any type of security camera on the premises?

Cheryl - your trip sounds fun

Sha - sounds like you had a great time!!

Linda - glad you had a fun, but tiring time.

Laurie - You are a wealth of information. The festival sounds fun!!

Glad everyone is getting the info they need. This is such a great thread, I find it fascinating to read, even if I have a different type of cancer I figure I can share this info in the future with someone I know that may need it etc.

Well dh is home. What little I saw of him. This morning I called to tell him they cancelled his surgeon appt. next week and mad it the following week I wanted to tell him if he was having issues maybe they could squeeze him in today, oh well , such is life. I tell him to keep his cell phone on him, but he is not answering it.

I am stressing out about going to see the radiation oncologist thurs, part of it is I dont like her personality. I think we didnt start off well and I dont think its getting better, sadly I have no other choice, since all the oncologists specialize in stuff at the hosp. and you have to go to one that does your type of cancer etc.Half is wondering what test she is going to do on me, of course I would like the easy way out. Somehow the word "easy" is never associated with me as the drs./surgeons know there.

Ds 18 has now said "I am too good for the community college" They have also asked him to sing at church, in the choir or I dont know exatly what the guy has in mind. He has a really great voice. The guy said "You have great vocals"

DS 22 team lost the game last night, but not by much. He said some dad was yelling at him for not putting his son in the game. This is a new league he has and only had them practice twice so far, gheesh!!

DS 22 is also going to the Night Of Joy. He has been before with a young adult group he goes to. I was seriously thinking of going this year.

Laura - know you have gone to NOJ before, was it at MK, as my ds went to DHS. Any info, tips etc? I am wanting to see Chris Tomlin soooo bad!!!! I am actually thinking of taking ds19 and ds20.

Well after some girls recent Poly review, I am having visions of a bad resort!!

GTAGWTA.

 

[MinnieTink]

I am so glad that I have this thread to come to! Thanks for all the info and positive vibes everyone.

An update and a ??
Moms MRI went well. She was so nervous. She took her first Xanax. But she got thru it and said that it wasn't nearly as bad as she had anticipated. The Tumor appears to be about 2 cms. Also there was a small area adjacent that "lit up.". It's not clear if it is one lesion or two. (two others were determined to be benign fibroadenomas, yay). The report said the adjacent area could be ductal in situ. (?????). The we also said she should have a CT chest, abd and pelvis and a bone scan.

So what do you know about ductal in situ?
And I had figured the CT and bone scan were pretty much "standard issue" for anyone with a cancer diagnosis. I mentioned it to my mom and it really scared her. So now I feel like I should have kept my mouth shut!! I feel terrible for scaring her....

Thanks for any info

 

[snappy]

Ductal carinoma in situ is the kind of cancer you want if you have to get it. It is non-invasive which means it has not invaded tissue surrounding the milk ducts, it is confined within the ductal system. It is DCIS for short.

It is diagnosed from a mammogram when areas of irregular clustered calcifications are detected. This can be hard to see if your breast are dense or fibrous. Another problem is that everyone has calcifications, the suspicious ones are clustered, irregular shaped and from what I understand on the small size. It usually does not form a lump so it is not detected from touch.

It can meander throughout the breast in the ductal system. Often the best way to remove it if it is widespread is the mastectomy as it can be tricky getting good margins. Another tricky thing about it is that areas of invasive tumors can be here and there in the middle of the DCIS, so whereas a biopsy can diagnose it, you can not be sure what else might be hiding in there until the entire area is removed and looked at very closely under the microscope by the pathologist.

Both my mother and I had DCIS. Only a small area of hers was detected by the mammogram, even the MRI did not show the full extent of the DCIS. The surgeon then did a surgical biopsy and had dirty margins on 4 of the 6 sides. She then was advised to have a mastectomy. She had no invasive component, so she was finished at that point, no chemo and no radiation. Her sentinel node dissection done at the time of the surgical biopsy was clear.

I had widespread DCIS. One area was several centimeters in size and there were other areas too. I only had the one small invasive area and it was .1 cm or just 1 mm.

The size of DCIS does not figure into whether chemo is done, it just determines if you can try to limit the surgery to a lumpectomy or not.

If your mother's tumor is 2 cm and DCIS it is a much different animal than an invasive tumor of 2 cm. The real story is not known however until the pathology results are in after all of the tumor is removed. They take many slides and look at it to investigate what type of cancer you have.

DCIS is called precancer in some books. In effect it does not have the capacity to invade other tissue yet, so in actuality it could not have spread to the lymph nodes, bones, liver, brain. However, it has to be removed, and they try to get it all by being aggressive and treat the edges with radiation depending on the location of the DCIS. There are different grades of DCIS and the more aggresive grades can morph into invasive cancer at some point in the future, hence the need to remove all the edges. The ductal system snakes around through the breast both side to side and up and down so the surgeon is working in 3 D mode.

The surgery required by DCIS can be more extensive (like in my case) because even though it is not invasive yet, you want to get it all. Someone else who has a distinct lump may be more easily treated with a lumpectomy, but if it has escaped from the ductal system and has invaded surrounding tissue or nearby lymph nodes, the other adjunct treatments, radiation, chemo are needed.

I hope that all makes sense. I read alot of books after being diagnosis-every book in both libraries near my house and the majority of the books on breast cancer in the library of my cancer services location. I also bought some books, the most thorough of which was the Susan Love book. It is quite a bible of info, some would say too much scary stuff but I studied it just like I did the pregnancy books when I was pregnant finally at the ri[pe old age of 34. I am just one who digests this stuff.

There is also a good website called breastcancer.org. It seemed pretty much up to date when I frequented it.

Hope this is helpful and not scary. The doctor can give your mom a pamphlet about DCIS that summarizes a lot of this.

Let me know if you have any other questions and I will try to answer.

 

[Notatourist]

Hey everyone.

Taxol is invading the life right now, but I am glad to see of all of you thriving. It's finally gonna cool off at night for a few in Orlando, the Magic is still in the playoffs and it's pretty hunky dory.

dealing with the usual day to day is leaving me wiped out. Any one have any words of advice?

 

[MinnieTink]

Snappy, thank you! I appreciate the info. There are still so many questions. I just hope and pray my moms got it on her to fight.

 

[KJ Luvs Pluto]

Notatourist - chemo can take the stuffing out of a person for sure. I found that I had to let some of the day to day stuff go. I didn't have any help other than what DH was able to do after his long day at work which was very little. So meals, laundry, dishes and the animals got fed and my job (down to part time during chemo) was about all that got done on a regular basis. The house cleaning could wait.

Rest when you need it - and you will need it. Don't wait until you feel like you can't go on anymore, don't push it. I know that's hard, but it will make the healing process easier if you get rest and some exercise if possible. Even a bit of walking or swimming (if you have that available to you) at a slow, steady pace will make you feel better.

Lots and lots of water. 10-12 glasses a day, every day. Very important to help flush the chemo through your body. I could tell when I didn't get my water for the day. Even though it was hard to drink that much every day, it really helped. Even during radiation, it was important.

Not sure I was of much help. I feel for you. Just last night I was remembering those days and thinking that I feel so much better. So it does get better. Remember, the chemo isn't making you sick, it is making you well.

to you.

 

[Pea-n-Me]

Ductal carinoma in situ is the kind of cancer you want if you have to get it. It is non-invasive which means it has not invaded tissue surrounding the milk ducts, it is confined within the ductal system. It is DCIS for short.

It is diagnosed from a mammogram when areas of irregular clustered calcifications are detected. This can be hard to see if your breast are dense or fibrous. Another problem is that everyone has calcifications, the suspicious ones are clustered, irregular shaped and from what I understand on the small size. It usually does not form a lump so it is not detected from touch.

It can meander throughout the breast in the ductal system. Often the best way to remove it if it is widespread is the mastectomy as it can be tricky getting good margins. Another tricky thing about it is that areas of invasive tumors can be here and there in the middle of the DCIS, so whereas a biopsy can diagnose it, you can not be sure what else might be hiding in there until the entire area is removed and looked at very closely under the microscope by the pathologist.

Both my mother and I had DCIS. Only a small area of hers was detected by the mammogram, even the MRI did not show the full extent of the DCIS. The surgeon then did a surgical biopsy and had dirty margins on 4 of the 6 sides. She then was advised to have a mastectomy. She had no invasive component, so she was finished at that point, no chemo and no radiation. Her sentinel node dissection done at the time of the surgical biopsy was clear.

I had widespread DCIS. One area was several centimeters in size and there were other areas too. I only had the one small invasive area and it was .1 cm or just 1 mm.

The size of DCIS does not figure into whether chemo is done, it just determines if you can try to limit the surgery to a lumpectomy or not.

If your mother's tumor is 2 cm and DCIS it is a much different animal than an invasive tumor of 2 cm. The real story is not known however until the pathology results are in after all of the tumor is removed. They take many slides and look at it to investigate what type of cancer you have.

DCIS is called precancer in some books. In effect it does not have the capacity to invade other tissue yet, so in actuality it could not have spread to the lymph nodes, bones, liver, brain. However, it has to be removed, and they try to get it all by being aggressive and treat the edges with radiation depending on the location of the DCIS. There are different grades of DCIS and the more aggresive grades can morph into invasive cancer at some point in the future, hence the need to remove all the edges. The ductal system snakes around through the breast both side to side and up and down so the surgeon is working in 3 D mode.

The surgery required by DCIS can be more extensive (like in my case) because even though it is not invasive yet, you want to get it all. Someone else who has a distinct lump may be more easily treated with a lumpectomy, but if it has escaped from the ductal system and has invaded surrounding tissue or nearby lymph nodes, the other adjunct treatments, radiation, chemo are needed.

I hope that all makes sense. I read alot of books after being diagnosis-every book in both libraries near my house and the majority of the books on breast cancer in the library of my cancer services location. I also bought some books, the most thorough of which was the Susan Love book. It is quite a bible of info, some would say too much scary stuff but I studied it just like I did the pregnancy books when I was pregnant finally at the ri[pe old age of 34. I am just one who digests this stuff.

There is also a good website called breastcancer.org. It seemed pretty much up to date when I frequented it.

Hope this is helpful and not scary. The doctor can give your mom a pamphlet about DCIS that summarizes a lot of this.

Let me know if you have any other questions and I will try to answer.

Sexy post! Great job!

 

[Pea-n-Me]

Taxol is invading the life right now, but I am glad to see of all of you thriving. It's finally gonna cool off at night for a few in Orlando, the Magic is still in the playoffs and it's pretty hunky dory.

dealing with the usual day to day is leaving me wiped out. Any one have any words of advice?

Uggh. I remember taxol as being the most difficult part of my treatment. I couldn't walk at one point after the first dose for about 36 hrs, the "bone pain" was so bad. And no meds really help it. But subsequent doses weren't as bad as the first, thankfully. Our own Laurabelle used to say she just soaked in the tub. I used meditation a lot. This may sound dumb but I recently bought some flameless candles (Target has decent ones) and I find them really relaxing and soothing, I light them every night. They smell good too - vanilla. So maybe a nightly warm bath with candles and meditation might help. You hang in there.

 

[wdw4us2]

Hey everyone.

Taxol is invading the life right now, but I am glad to see of all of you thriving. It's finally gonna cool off at night for a few in Orlando, the Magic is still in the playoffs and it's pretty hunky dory.

dealing with the usual day to day is leaving me wiped out. Any one have any words of advice?

Sorry to hear you're feeling the Taxol. I agree with what KJ said about water and exercise. I had a hard time choking down the water, so I used to mix a little bit of grape Propel in each glass of water. It made the metallic taste less noticeable and it was easier for me to drink. As for the day to day I was fortunate to have friends and relatives bring over a couple meals a week during the week after each chemo. I didn't do any cooking then because I didn't have the energy or the interest. As for cleaning, my poor DD got stuck with that every month when she came home from UCF to check on me. DH took care of the kitchen and bathrooms, though. It's hard to let the cleaning go, but it's more important to rest and save your strength for your recovery. As I have mentioned in previous posts, I lifted hand weights during the chemo except for the week immediately following each infusion. I didn't start swimming until midway through my radiation - the pool was too cold!

MinnieTink - Don't feel bad about scaring your Mom. She may be initially frightened by something you say, but she will then realize that you are just trying to help her.

LMP - I can relate to what your DH22 is going through. I coached youth league softball for seven years before I was married and had my own kids. Whenever a parent tried to tell me what to do during a game, this was my standard response - "Practice is Monday night at 7. If you want to tell me how to coach, feel free to start coming to practices and help out." I never had any takers.

Update on our stolen truck: no news yet but I wasn't really expecting any. The Detective in charge of our case just left my house. He came over to verify that we had the Title and both sets of keys to the vehicle. He seems to think it will turn up abandoned somewhere within the next week or so. I told him we figured it was in the Port of Miami ready to be loaded on a container ship to South America. That is what these thieves frequently do and they make a tidy profit. I have started looking for a "beater" for DH to drive to work since I told him he wasn't taking any other of our good vehicles in that parking lot ever again. Since I'm the car nut in our house, finding the replacement vehicle will be my job.

On a more positive note, DH and I went out to dinner on Saturday night to celebrate our 23rd Anniversary which was Sunday. He surprised me by giving me something I have been hinting about for years - a diamond tennis bracelet! It definitely lifted my mood and helped me remember how fortunate I am to be married to such a kind and considerate man.

 

[luvmarypoppins]

Good morning ladies. Its going to be 80 here on saturday.

Nota - sorry you are having a rough time with the chemo. They told me to drink lots of water with the radiation too, so that might help. Also I took the mind set that what could get done house wise, got done and what didnt, didnt. Like if we had paper plates etc, so the ds and dh didnt want to do dishes, fine with me etc. Dont worry about the other stuff, just concentrate on you. Around here we have a service called "Cleaning for a Cause." Its only for the breast cancer women. A local company donates their services for a while etc. I think its done through the hospital referral etc. Do you have anything like that there? I didnt have any help from family/relatives, none of them live in this state and our church was really good though and cooked us lots of meals, Get any help you can. Hang in there and keep fighting tough. You are doing good sista!! Hope the Magic does well. I will have to see who we will root for.

Fl Lisa - Sounds like you have a dh. Wow that dinner and gift sounds wonderful!! Happy vehicle shopping.

Minnie Tink - glad your moms mri went well. I dont think you scared her. Its just goes along with what everything entails. She is bleseed to have you there for support.

Please pray for Alyssa. She is in the hosp. They think she has a bacterial infection and are watching to make sure she doesnt show any signs of rejecting her new heart. I guess Linda would understand this more.

Today ds22 is on that interview. Last night he said, why am I going here? Hmm, I think a certain mom told him he didnt realize how far away it was and I think its mostly a commission based job etc. And low and behold his internship calls him back after ignoring his texts, phone calls etc. I dont know what will become of that. They were only talking part time so far.

Ds 20 was smoking again and unleashed his verbal tirade on me again. At least dh was here to witness it. So goodbye phone starting today for 30 days. When will this young adult stop being such a rebel? Its exasperating sometimes. He says"you love me too much!"

Also we got some letter from the lawyer about the property we inherited. I dont understand it. I think someone is trying to sue us but they legally cant. Its the company who brought the property who is legally responsible. This is a mess and a headache.

Tonight dh and I will go grocery shopping in anticipation of the wonderful diet, umm, yummo! Time to stock up on distilled water, lettuce and vegetables.Gotta love cancer.

GTAGWTA.

 

[lookingforward]

Hi everyone!

Nototourist: I did taxol, actually TAC chemo, six treatments. I also had a hard time with it, mostly the bone pain that Linda mentioned. Did you get the Nulasta shot the day after chemo? I had to take pain meds for a few days to a week after each treatment. And rest...a lot!

As for the expanders...I hated mine but let me tell you that when you have your exchange you will feel sooooo much better! I had a single mastectomy with expanders and then during my switch I had a propholactic (I KNOW I spelled that wrong) with skin sparing mastecomy and immediate implant. I woke up with two foobs (as my kids like to call them) that were perky, c-d cup, and SOFT! I could not stop touching them,lol! They were so wonderful after having the expander for a year!

Hang in there!

 

[KJ Luvs Pluto]

I'm glad to hear the implants are better than these expanders. I feel like I have a rock in my chest that is poking into my armpit. And for those of us who have to have radiation, we need to have them in for so long before the exchange can be done. I didn't have anything done to my "good" side either so I'm very uneven since the expanders get overfilled so now that it's Tshirt weather rather than big bulky sweater weather I'm going to look like a bald (well not quite bald since I no longer shine), flat on one side, "out to there"on the other side, freaky women . Even the Bride of Frankenstein was symmetrical Oh well, this too shall pass and I am just making fun of myself. I know so many others have much worse that they are going through and I have it pretty easy peasy compared.

I call mine a SOOB (saline ....) and I have named it as well.

Lisa - What a wonderful DH.

MaryAnn - Sorry to hear your DS is still giving you trouble. I heard it can take longer for boys to "mature" but they eventually get there. Here's hoping it's soon.


GAGWTA.

 

[luvmarypoppins]

Good morning ladies The sun is wishful thinking because its really cold here today.

KJ - wow, you have a name for it too??

Well the black cloud seems to be hanging over our house lately, hmm will it ever go away? And I dont mean weather wise!!

Ds22 said they wanted him to come back for another interview today. He said its just too far away. He has an interview tomm. and friday. Both ins. companys. He got a return call finally from his internship. They said there are no openings, Um, they told him they wanted him part time for the summer. Why do these people lie and lead everyone on etc. Not that he was counting on anything. I told him to please send out more resumes as kids from college who end earlier will be moving back home, he will compete with them etc. I just think he is oblivious as usual.

Our one tenant has not paid the rent. Dh sent him an e mail. He has not responded. This is not a good sign. He is usually very reliable. I just so do not need this too.

I am gong to be researching the gmc acadia. Sounds like something I might like.

Tomm. is the radiation onc. visit. I am getting unsettled about this. Not just about what her plan is for me, but sometimes you see people who are just so much more sicker than you and my heart goes out to them. Usually I just see the familys waiting for their loved ones treatment to be over. Everyone is just so quiet. I think it would be better if they talked etc. I was laughing with dh going by about something and everyone just stared at me like "How could you be happy etc?".

GTAGWTA. Have a great day everyone.

 

[annrae]

What great information about DCIS Laurie and you explained it so much better than the Dr. ever explained it to me - you amaze me! Between you, Linda, Sha, Laura and Ann, we are all in very good hands! Thank you to all of you and anyone I've missed who really educates us as we move through these trying times in our lives.

Hugs to all of you. Barbara

 

[KJ Luvs Pluto]

KJ - wow, you have a name for it too??

Tomm. is the radiation onc. visit. I am getting unsettled about this. Not just about what her plan is for me, but sometimes you see people who are just so much more sicker than you and my heart goes out to them. Usually I just see the familys waiting for their loved ones treatment to be over. Everyone is just so quiet. I think it would be better if they talked etc. I was laughing with dh going by about something and everyone just stared at me like "How could you be happy etc?".

I figured people name their cars - so what the hay, why not.

I was really fortunate in the radiation oncology area. During the six weeks I had to go, only my last day was there any one who brought someone along to wait with them. Other than that, we all were there by ourselves so there were not a lot of people in the room. And we all did talk together and joke around for the few minutes that we had together. I'm grateful it was like that and not so solemn.

 

[luvmarypoppins]

Good morning ladies

Well I am back from the radiation oncologist. And of course I see a little child who just had radiation. My heart just about broke. He/she looked so sick. I saw the mom following the stretcher into the recovery area. Its bad enough for us, but the kids just break my heart.

Also the cashier had a picture of a little girl with a minnie outfit on. I asked her and she said it was her grand daughter and her dream was to take her there. I said we are going etc.

Also I was happy to hear a lady say it was her last rads. They said oh, you can have a pin etc. I was commenting to the cashier about not getting a pin (remember I told you sistas we thy ca patients get nothing. Well she said she would get me a pin, I said no, I really dont want it, I am just glad to hear someone else is getting it. I said mine is not the same etc. She said, oh yes, yours is one of the most curable (note to self: maybe true, but they just dont understand I have the rare and agressive variant etc. )

So as of today (she really wanted it yester, but said it would be ok) that I am on the horrid diet. I told her I was going away etc. So I am sure by the next week I might be wining and complaining, so my disnery ADRs are never gonna look so good. This time she will give me some zofran for the horrid shots. I told her my short term memory is not so good, she said its common in patients with thy ca. I must have the pregnancy blood test again and I have to sign some waiver etc. So my life lately wil be horrid food, blood tests, horrid hormone shots and scan etc. cancer, cancer, blah, blah

Ds18 did not get a confirmation e mail about his spot on the waiting list. He sent another e mail yest, strange as others posted they did on the blog spot. I had him type 4 questions for the blog, I told him sign it concerned mother of student on wait list. It will be interesting to see the answers.

Ds 20 decided to go buy his own go phone since we cut his regular one off. And now he basically does not speak to me or dh. sigh, sigh

Ds 22 is going on an interview today. At least its good experience for him.

Ds18 also got his itinerary for his class trip. They are staying at Carribean Beach starting May 24. As soon as they get the magical expres to the resort they are getting on another bus and going to the Orlando Rescue Mission for their mission project. One day they are having breakfast at crystal palace and 1 day dinner at Ohana. The CP ADR is for like 2 groups of 24 each and the Ohana adr is like 5 seperate adrs around the same time. That should be interesting.

GTAGWTA. Have a great day everyone.