Dis Breast Cancer Survivors Part IV - GAGWTA

[smiley_face2]

Yes indeed second opinions are a good thing! I wish I had gotten one sooner!!
Diana, there is a new genetic test out, that test the actual dna of the tumor and tells whether the cancer will respond to chemo or not! there was a woman on the news here where I live just a week ago. She paid the $4000. to get the test done in California because it was not offered here then. The test showed her cancer would not respond to chemo, so obviously she did not have it, just the surgery and I think radiation, but not sure on that part. Anyway it was quite a while ago, she is healthy and cancer free, and now thankfully the test is provided here where I live. Too late for mine unfortunately because I could probably have skipped the torture of chemo that did not work for me. Having said that I do not know for sure, and I just know I wanted to do everything I could to stay alive, so I am telling myself that the chemo may have killed off any nasty little cancer cells that were hiding in other parts of my body. And I know the radiation is a proven thing to kill the cancer cells. All in all, I'm feeling pretty good. My white blood count and immune system is really low so I have to be careful of not being exposed to germs, and I could do with some more energy, but like you I have had other health problems for the past 12 years and have not been able to work, so comparitively speaking I'm no worse now than I was. Some pain still in the breast and under the arm but slowly getting better. And I Am Alive. So if I could do it over, I would have chosen if available to have that test, and I still would choose to do the chemo and radiation, and I would have told the 1st surgeon that I wanted her to go back in because less than 1 mm is NOT a good margin. I think if I had done that, or she had taken more tissue in the first place it would have not come back. I still have 2 beautiful daughters, a lovely daughter in law (my sons widow) and 5 stunning grand children, all of whom have been through so very much already, losing me too would be something I will try hard not to put them through yet.

 

[Dancind]

Thanks, I have heard of a chemosensitivity test but was under the impression that it wasn't widely available. Pretty sure it's not covered by insurance, but would be worth the money if I can find it. The test and the money, that is.

Ok, lots of horror stories about radiation. Some are pretty sure that it caused their recurrence. And the lingering pain from it sound really unpleasant. Any stories in this group?

 

[smiley_face2]

I found radiation to be easy compared to chemo! I didn't have much skin breakdown, and it was just like having a sunburn, not a bad one at that. the breast itself became much firmer, hard almost,but that is going away now as well. Compared to everything else I've gone through in the last year and half, it was easy. I can't see how it could cause a reoccurance though? from all I have read I wish they had done that immediately after my first surgery, it may have taken care of those cancer cells that were left behind that started to grow again. Every day I tell myself that this is a day I would not have if it were not for all the surgery, and treatment I've had. with the very aggresive cancer I am sure I would have been gone by now with no treatment.

 

[Dancind]

You know, I'm quickly learning that there are several conflicting studies for every type of treatment.

I'm meeting with the Oncologist for the first time Thursday. Is she going to be a sort of over all doctor, or will she just talk to me about chemo? I want to ask her about that test, for sure. She also is associated with the cancer group at our U, which is supposed to be pretty good. So I want to ask her about PBI. It's a new radiation procedure for lumpectomies that the radiologist I met with doesn't do.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

I keep forgetting my DIS password, so if I disappear don't be alarmed.

Laurie, sounds like you & Sha had a great time!

Maryann, congrats to your DS!

Diana, there is SO much info it is hard to take it all in. My mom had a test to see what her chances of recurrence would be, and it was inconclusive. Right on the borderline, so it didn't help her make any decisions. I hope your consultations will provide some clarity!

Welcome, dis-happy! I have no insight, but hopefully you will get some answers soon.

Annie, good thoughts for you as you wait for results!

PatsMom, hang in there. Hopefully they can get the anemia sorted out. Enjoy your trip!!

So, DS was accepted for the Theatre apprenticeship he applied for, but they wanted him in June instead of July. He will have one day between the WDW trip and the apprenticeship. But now the rest of his summer is open. We'll see what other activities he wants to do. Dance, Theater, etc. He has been hounding me for driver's ed. Ugh.

 

[Dancind]

JSK, my DD was into all of that too. She didn't get her full DL until she was 16, but it sure helped with all the running around!

 

[jackskellingtonsgirl]

JSK, my DD was into all of that too. She didn't get her full DL until she was 16, but it sure helped with all the running around!

He is already 16, but we don't want him to drive yet. The road from home to the school is a REALLY busy expressway - not for novice drivers. He also has a bit of a Theatre brain - he is flighty and easily distracted. Then there are the issues of buying a new car for DH and paying for the insurance for DS to drive on his own.

TX is on a graduated licensing program, so he won't even be eligible for his "real" license until he has been driving on the permit for at least 6 months. But he has to have Driver's Ed before he can get the permit.

 

[snappy]

From personal experience you should delay as long as you can buying a car for your teen. DD 16 is responsible but I am sharing my car with her. It gets tricky and does not really save $$ since she is rated on my insurance. I have more control this way.

 

[jackskellingtonsgirl]

From personal experience you should delay as long as you can buying a car for your teen. DD 16 is responsible but I am sharing my car with her. It gets tricky and does not really save $$ since she is rated on my insurance. I have more control this way.

I think realistically he might drive to school his senior year. We had originally said second semester of his junior year, but now I am thinking not.

 

[snappy]

I would like to add that the more they drive with you the better. Helps you both boost confidence.

 

[luvmarypoppins]

dishappy - I would seek out a second opinion too

Diana - I hope your onc. visit goes well. I think the drs. always want to put the patients into the standard care and treatment box.

Annie - sorry you are having to deal with the anxiety. I am type A too for sure.I worry about everything. I even drive the drs. crazy. They say stuff like...only you would ask me something like that etc.

Lisa - hope you were able to get the oxygen

Sha - hope your visit went well with R. You probably hated to come home.

PatsMom - I too hope they solve your anemia problem and enjoy your reunion with your dd tomm.

Elizabeth - great news about your ds apprenticeship. Good luck with the driving. We sent all of ours to drivers ed school.

Laurie - agree with you about keeping them driving with you etc. Now we are going through all this mess with ds. I am having dh call the ins. co this week. I dont want to think of all the problems this is going to be with everything.

Ds3 has just found out that he still has to wait to hear about his number #1 choice. They were suppose to find out this week, but now its mid May, so he has picked out clinicals at the comm. college just in case. Ds2 got the landscaping job but he has to share it part time with the other boy, oh well, better than nothing for sure. I am still congested and coughing and so tired.

GAGWTA.

 

[Pea-n-Me]

Sorry MIA. Have had a horrendous few weeks with three family hospitalizatons (not me). Fortunately nothing too serious. Trying now to catch up.

Welcome new members. Dancin, my case and timeline was a lot like smiley's, about 10 months from finding lump to done with treatment (surgery, chemo, radiation). Also triple negative so when it was over, it was over (no tamoxifin). Fortunately things have been stable for me since - cancer free for 8 or 9 years depending on when you start counting. Things have changed in that time treatment wise. I'm kind of glad I didn't have a lot of options other than what type of surgery I had (ie was told I needed chemo and radiation regardless). I have no doubt, however, that I would have chosen chemo if presented with that as an "option". My oncologist told me the time to fight it was "now" and I agreed. Everyone and every case is different, however, so what I choose may differ completely from what someone else would choose. Just the nature of the beast, I guess.

dis-happy, there is a correllation to radiation to the chest and later breast cancer, but I'm pretty certain it is the type of radiation that comes from treatment for something like lymphoma than it is from the type of radiation that comes from diagnostic CT scans, the amount of radiation between them being hugely different. I have taken care of lots of people who've had breast cancer after lymphoma treatment. It's good that you've seen a breast surgeon and I would continue to follow up with the surgeon if there are issues - the breast surgeon is THE expert in all matters of the breast.

Ocean Annie, sorry you are still experiencing problems. I can't re-read your post right now but from what I remember, worry is an issue for you. I know that feeling, for sure. There is a book called The Wellness Book that might be helpful in learning some Mind-Body techniques to help you train your mind to relax. I had to learn to do it myself. PM me if you need more info (and I'll try to reread your post to see if there's anything I missed).

Snappy, your Apple tutorial has been very helpful. We started out as Mac users years ago with our first computers, but jumped ship when we found it difficult to get software. Things have changed, and we have iPhones and iPad and since our desktop died, we're seriously considering moving to Apple once again. (Not right now, though, too much going on.) I have oodles of pics, too, and I'm interested in cataloging them the way you are. We can speak more about it later. BTW, DS is loving his new Marucci bat from Baton Rouge, LA!

lmp, I'm sorry I haven't answered any of your baseball ?s but I have been thinking about them. DS is enjoying a good season, just back from an out of state tournament this weekend where he got a monster hit down to the back fence that sent all the outfielders scrambling, lol. He has grown (in height and bulk) so much this year. He loves every minute of it and yes, he'd like to play in college (God willing and the creek don't rise). We'll see how HS goes first, though, lol. If not, there are lots of adult leagues around here that people play in well into their 70's! Have been following most Red Sox games. Did you happen to catch the 100 yr anniversary celebration at Fenway when the Yankees were there last Friday? Glad your ds is finalizing his decisions about school. My advice would be to strive for the BSN program if possible. It will help with job opportunities down the road, and I'm sure he will not really want to go back to school, might as well get it done now before life gets really busy with work and kids, etc. I am concerned about your cough and the potential for fluid in your lungs from what you've said. Have you seen your primary care lately?

OK, gotta go start unpacking. Completely blew it off yesterday, was so tired! GAGWTA

 

[luvmarypoppins]

Lisa - how are you feeling sista?

PatsMom - your trip is right around the corner.

Diana - wishing you all the best tomm

Well 3 weeks from today, dh and I will be in Disney. I am just underwhelmed to say the least. Guess its just with everything going on etc. Maybe this week end we can do some shopping since it will be raining. I need some new sneakers and some wardrobe updates for sure.

I told ds3 I would help him a little with a presentation he is doing at church friday night for the kids. He is just so busy. Just prep stuff. Now his car is being recalled and dh van needs to get serviced, so it will be the car shuffle etc.

Today I called the endo to reschedule since they cancelled my visit.Yes I got the letter in Feb. and I am calling you today. They will call me back. Its like you have a better chance of winning the lottery etc. I told them to talk to her and double book me because that is what she told me before. They said October, I said no way, its cancer and I am every 6 months etc.(suppose to be the end of July originally since I have to do sono and blood work too)

My congestion is alot better. This thing sure dragged on.

GAGWTA.

 

[snappy]

Glad your congestion is better,LMP. Maybe you will get more enthused about your trip as it gets closer.

I am off to NOLA and the jazz fest!!

Wish me luck!

 

[smiley_face2]

Glad your congestion is better,LMP. Maybe you will get more enthused about your trip as it gets closer.

I am off to NOLA and the jazz fest!!

Wish me luck!

Please post some pictures if you can! have a wonderful time!!

 

[snappy]

Glad you reminded me. I will pack my DSLR. Not sure if I want to drag it around in all the craziness, but I might.

Linda, I would love to talk about the Apple computer with you. i would definitely suggest signing on for the one-to-one sessions for a year for the $99. Not sure how easy though it is for you to get to an Apple store. That is definitely part of the equation.

"My" Apple store is not far and I plan my Fridays around going to a session most weeks, but not tomorrow. Beach boys here I come!!!

Life is good.

My friend emailed me that Bruce Springsteen is doing a 2 and a half hour set on Sunday. All of us are going that day, including her new "beau." Trying to talk DD21 into it and bringing her BF.

Oh, she got word yesterday she got a very interesting internship at an investment banking/financial services firm in NOLA and Atlanta. She had to submit a case study that took her a week to complete and she did well. Thank you, Tulane.

Hoping it may lead to a job. We will see.

 

[Sha]

Good morning ladies

yes LMP it was very hard leaving R and then some stress afterwards for lack of better words. All is good. I also left my pandora bracelet with him by accident.

Was nice to see Laurie and have dinner. We didnt get the second visit but I did see my aunt. Was really nice being able to drive around on my own and learn my way. R took his motorcycle to work.

I need some Disney time. I cant go until the next weekend or the one after Mothers Day. Trying to plan my birthday party and started to plan mom's which is at WDW. Room arrangements for the dvc stay will be the hardest to figure. I am going to try for dinner at one of 3 places but cant book that until May 19. Got a few other ideas. Keeping it simple so we dont have to go rushing from place to place. R has a bday just after mom so I am hoping to do a little something for him too (naturally). But this is all in November. All will be a surprise for mom including, I hope, that her sister and bil can make it. It will be her 80th.

I have some paperwork to do. Will try to come and catch up on here.

 

[luvmarypoppins]

Lisa - how are you feeling sista? Is today chemo day? Wishing you all thebest. Hope you have found something that you can eat and tolerate too.

Diana - how did your onc. visit go?

Laurie - have fun at Jazz Fest. Hmm, listening to our Jersey guy!! Awesome. That internship sounds great for your dd. I hope it turns into something permanent.

Sha - sounds like you have a wonderful plan for the birthdays. Hope it all comes together. Will you be in the world when wither PatsMom or I will be there. We are May 17-23. She is sooner.

Cheryl and smiley - guess you are both in the trip planning stage too.

I still have not heard back from the endo. If not, I will def. call next week. I want this straightened out soon. Today ds is going to ask the professor why they have to wait so long to hear about the nursing school decisions etc.

Tomm. ds2 is going for the landscaping orientation training. Then later dh and I will go shopping.

GAGWTA, have a great week end everyone.

 

[PatsMom]

LMP - hope you are feeling better and the congestion has continued to improve. And I hope the endo gets back to you quick!

My saga continues. Cataract surgery went well and I am already seeing better. Retrieved my daughter at the airport and she is happy to be home. On Sunday I got a call from my primary care saying that the anemia report from my pre-op concerned her. That's because I have quite a history and they never did figure out what caused it. They blame the cancer and say it just took my bone marrow a long time to remember to make red cells! She said she was ordering more lab work. On Monday afternoon I got a call from her office but was too sleepy to call back. Post surgery anesthesia nap went on for a while!

Tuesday morning I went back to the eye doctor and passed my check up. One our way back home, I called my primary. They wanted me to go to their lab that day if possible and also pick up specimen cards for stool samples. Fun, fun, fun! While we were in that town I went to the orthopedic walk in clinic about my right foot pain. X-rays show what they think is a stress fracture so I am wearing a lovely boot. And leaving for Disney a week from tomorrow. Fortunately my daughter has already volunteered to be my wheelchair pusher if needed!

They have referred me back to the oncologist because the additional labs showed no reason for anemia. So I see him on Monday. Tuesday is another eye appointment, Thursday is the ortho for my foot again. And Saturday I leave for a much needed vacation! I can drink margaritas with lunch!

Hope everyone is doing well. I am wound up pretty tight because one thing I learned from my first cancer is that calls on Sundays and late in the evening are never to announce good news.

 

[Dancind]

My visits with the surgeon and onco actually went pretty well. The tumor is 2.3 cm and it does not look like it is in the lymph nodes. I am hormone positive and HER2 negative. I talked with the onco about my concerns with radiation and chemo, and she said with a mastectomy, the other treatments would not improve my chances by that much. So I could have surgery and be done (and no huge hurry on that), except for estrogen meds. So that's what I'm thinking.

It feels good to know almost everything, and be making a decision. Like I'm almost back in control again, right?

My daughter is worrying me. She is a tiny bit autistic (aspergers) but has been doing very well with eating a good diet. Which she has been cheating on with tons of sugar lately and is getting a little crazy. So instead of showing concern about this, she is mostly mad at me. Not a good place for either of us, and is adding to the stress for me.

Patsmom, hope that turns out better than you expect. Glad your surgery went well, though.

Good for you, Sha, planning something fun for your Mom. My birthday is next week, so no surgery until after that!

Snappy, what a great trip! Trip report after, please!

Pea-n-me, thanks for sharing your story. And it's great to hear from someone doing so well.

LMP, you will enjoy your trip once you get there! I feel happy as soon as I drive through those gates! I hope it is not terribly hot for you.