Dis Breast Cancer Survivors Part III - GAGWTA!

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First, thanks for accompanying your friend. It is very daunting to embark on this alone.

A very good resource can be found at breastcancer.org. I has alot of info for each stage of the journey.

I assume your friend has had the biopsy and is scheduled for a lumpectomy and she is scheduled to meet with a breast surgeon? Has she considered obtaining a second opinion if she is not comfortable with the first breast surgeon?

One thing that is sometimes determined at the biopsy stage is whether there is any invasion of the tumor. The size and makeup of any invasive component helps determine the treatment plan.

Bring a tablet to take notes. Ask for a copy of the pathology report from the biopsy.

That is all I can think of at the moment, but please direct your friend to that website. It is very well organized and helpful.

Please let us know how things go and ask any specific questions as needed here. You will receive a lot of sound advice and help.

Laurie
 
I forgot to post this and wanted to do it now before my brain forgets as usual. They just had a little piece on the news about...

cryo ablation for breast tumors. They say they freeze them before removing them and it shows it helps with the dna too? They are doing it at Columbia in NYC around here.

Anyone know about this? They said they are liking the results so far.
I hadn't seen this one. My mother mentioned she saw a segment on a morning show about recommendations for colonoscopy for BC patients. :confused3 I hadn't heard that, either. New stuff coming out all the time which is great. My docs are pretty good about sorting out the "must do's", "should do's" vs the "can do's".

Hope everyone's having a good weekend.
 
She's not scheduled for anything yet. Her results from the biopsy just came back on Friday (of course now she has a weekend to stress) and the appointment Tuesday is with the surgeon who she is comfortable with and came recommended from my cousin who is a local radiologist.

I'll check out the websites and forward them to her as well. She's the type who will get easily overwhelmed. I think that's why she's asked me to go with her. I can keep cool and take notes. I have a book for her to write down her questions and keep notes. I know when my bil had leukemia the book was a literal life saver.
 

Hope everyone is doing well this weekend! I am sleeping a lot. Seems like the chemo treatment has really dragged me down. I was told to expect it last week but I must be on a delayed schedule! And I am not happy that I am having bladder spasms still. I am still taking Vicodin to control the pain. Which is also probably part of the reason I sleep a lot!

No good news for me lately. They will be re-doing my surgery at the end of the month. Tumor is high grade and more invasive than anticipated. So they want more pathology before making a final treatment recommendation. We are now hoping for a best case scenario of six chemo treatments followed by frequent repeat cystoscopies. Worst case now is bladder removal. Not something I am looking forward to thinking about. But I'll deal with that when the time comes.
 
Patsmom, I am very sorry to hear your pain continues and that you face more surgery. It makes me feel like a jerk complaining about my pain and spasms. I am glad you are getting some relief from the pain meds.

Hope the second surgery is more difinitive.

Hang in there honey.

Linda, thanks for thinking of other sites and posting the links for Lowie. My posting is still kinda limited over here. I am a bit concerned about my trip now. Can't see myself traveling in 4 weeks unless things turn around.

The spasms moved from the back and stomach to the arm of the shoulder that received the platelets. I can't conceive how Patsmom deals with spasms in the bladder. I am useless and drugs are not really working, constant showers do. My skin is gonna be leather soon.

I would not opt for this procedure if given the choice.
 
She's not scheduled for anything yet. Her results from the biopsy just came back on Friday (of course now she has a weekend to stress) and the appointment Tuesday is with the surgeon who she is comfortable with and came recommended from my cousin who is a local radiologist.

I'll check out the websites and forward them to her as well. She's the type who will get easily overwhelmed. I think that's why she's asked me to go with her. I can keep cool and take notes. I have a book for her to write down her questions and keep notes. I know when my bil had leukemia the book was a literal life saver.
It's kind of interesting going through this because you meet a slew of doctors and sometimes different ones have different takes on things.
All she knows so far is it is a 'small cancer, 1 c.m' and they will remove it and do radiation
This probably came from either the radiologist or the primary care doc?

At her appt with the surgeon, she'll primarily be discussing surgical options,, although he or she will give an opinion/overview of what else she might need based soley on the biopsy, knowing the patient is hungering for that information at that first appt. (Just know that that information can change based on the actual surgical pathology - like Pats Mom just posted above - ie what they find when they examine the removed cancerous tissue.)

She will likely need to decide between lumpectomy w/ radiation vs mastectomy. This you can read about on breastcancer.org. If the tumor is small and contained (even if it's invasive), surgery and radiation will have essentially the same long term results as mastectomy alone. Taking off the breast doesn't guarantee she'll live longer or anything like that, which is what most people think going into the surgeon. In many cases, it's overkill, though in years past this was the standard treatment. (And understand that sometimes it is required if the cancer is spread throughout the breast in different spots that they can't get in one shot; or if the woman is very small chested, etc.) So this is something you should definitely ask the surgeon to explain further. My surgeon herself wrote my options down on my paper along with recurrence rates with each type of surgery so I could study them further.

You should also ask him or her to explain "clean margins", which means they need to get all of the tumor out completely and will go back in again if they don't. A pathologist will actually look at the removed tissue to make sure the edges have no cancer cells, as if they do, cancer can grow again. However, even with clean edges there is always the possibility that some cancer cells are left behind and this is what radiation is designed to take care of: to clean up the local area around the tumor and in that whole general area (which may be larger if the tumor is found to be invasive, eg they'll do under the arm, ie axillary area, and above the clavicle with invasive, as breast cancers can spread there).

Another thing to ask the surgeon is about sentinel node biopsy/axillary node dissection. (You can read about it on breastcancer.org also.) This is to rule out whether the cancer in the breast spread to the lymph nodes under the arm before it was found. :guilty: Generally they do this during surgery, but they may do it differently depending on where you go. But checking the nodes with all breast cancers is standard. Node removal can lead to lymphedema in the arm, so again, something to ask the surgeon about.

You'd also want to ask the surgeon about how long the hospital treatment will be, ie overnight? day surgery? and what the follow up with him or her will be both short term and long term.

Now, treatment other than the surgery is referred to as Adjuvant Therapies. This means radiation and/or chemo and other medical therapies. For this, she will see a radiation oncologist and/or an oncologist. They are the only ones who can make a definite treatment plan for your friend once all the results are in after the surgery and your friend has chosen which route she wants to/needs to go as far as post surgical options. The things that are important to know here are hormone status, HER2Neu status, whether the cancer is invasive or not (which should be in the biopsy report but *could* change), and whether it's spread to the lymph nodes or not, as these factors will drive any adjuvant treatment decisions.

Yup, fun stuff. :faint: It's a lot to take in and a lot to decide about.

A notebook is good. Don't worry too much about writing every possible thing down, as most medical records today are electronic and you can simply get a copy of your records. (Definitely get a copy of the biopsy results right away so she can look things up that pertain to her - the surgeon should give her a copy.) The things you really need to write down with the surgeon are the things she needs to decide about *surgically*: surgical options, lymph node options, clean margins, follow up. Firm decisions about adjuvant therapies can't really be fully decided until later, when all results are in, and with the other doctors.

One thing to caution about: the reading is scary. Unfortunately, it must be read in order to make informed decisions (well, for most people - some really do want absolutely no part of reading and that's fine). Also, no two cases of BC are ever exactly alike. So what someone else did or didn't do won't pertain to her - there's no way of knowing for sure what someone else had, exactly, either. Many people can't say whether they were hormone receptor positive or negative, how many nodes they had positive or whatever. So they may be telling you something but your friend's case may be completely different. FYI.

That's about all I can think of right now. Feel free to ask ?s here if things come up. Good luck this week.
 
Pats Mom :hug: Hang in there.

Laurie :hug: Hopefully it will get better soon.

lmp how are you doing?
 
Thanks Linda, I have realized that working this past week was not a great choice on my part. I may have brought some of my problems down on myself.

Thanks for your great, thorough post, Linda. You have done this for so many over the years. Maybe Lowie has a good idea re: a place for some of these points on page one or something.

We are just blessed to have you here to give all that you do. I know how busy you are with on going construction, kids out of school, work, etc.

Lowie, Linda is right on with all this info. Generally, I think the doctors like when the patient comes in with some info under her belt. They can give you options and suggestions, but ultimately there usually are choices with breast cancer, lumpectomy vs mastectomy, immediate reconstruction vs delayed if having a mastectomy.

Other things aren't optional.

Another thing that helps the newly diagnosed is a support group. Ask about the options in your area. We operate on this thread like a support group but the value of a live group can be immeasurable.
 
Good morning ladies

I should be at church but dh is home with food poisoning probably so I am keeping an eye on him. We went out last night. Oh well. Guess we might cross that place off the list.

Lowie - You are a great friend to accompany your friend on this journey. The ladies here are a wealth of information.

Pats Mom - sorry the news was not what you were expecting and so sorry you are having the pain side effects. My thoughts and prayers are with you.Keep the faith sista.

Laurie - so sorry that you are also having pain and side effects from the treatment. Wishing you all the best and lots of healing thoughts and prayers.

Linda - how goes the remodel? I cant wait to see the pictures.

Thanks for asking about me. I finish the cipro on tues. My visit is sept. 7th. He said another surgeon could see me if there is a problem. The only problem is the slight drainage. I guess I am more concerned about his "surgical solution" as he calls it to this problem. I dont know whats in there either. Its either the loose stitch or the infection I had before which hopefully wont be in the mesh as I hope he wont have to take it out again. I have a feeling I will be hearing the "S" word for sure. At least its not staph etc. Just the same subcutaneous etc. stuff I think from before. Enough of me. You cheer for the Red Sx and I will cheer for the Yankees and we will see what happens in the home stretch.

Lisa - swim a lap for me ok.

Sha - where are you sista?? Miss ya!!

Tracey - how are you and your mom doing??

GTAGWTA. Have a great day everyone.
 
PatsMom, Laurie and MaryAnn - :hug: to all of you. Y'all are going through so much right now, my thoughts are with you.

Lowie - Although it's not a question to ask, it's good to be prepared for things to change as Linda already mentioned. I had to have a mastectomy but was told that there would be no need for chemo or rads after :banana:. Then found out when I went to visit the onc. for what I thought would be an "all clear" visit a few days after my surgery that I was going to need both :scared1:. Talk about a letdown. I wished the doctors had told me that chemo/rads were a possibilty rather than saying I didn't need them only to find out later that I did. Neither were as bad as I had heard and not everyone needs adjuvant therapy but it's good to be flexible in what to expect. And no question is too dumb or embarrasing to ask either here or at the doctors office. If your friend doesn't ask a question that you think she needs the answer to, then feel free to speak up and ask for her.

I hope Monday is good to everyone.

GAGWTA.
 
Thanks for your great, thorough post, Linda. You have done this for so many over the years.
Actually, Laurie, I feel like I've gotten way more out of this thread than I've given, so any time I can help with thoughts I'm more than happy to.

It's so nice to have friends with us on this journey.
 
Interesting that you feel that way Linda. I too feel that I am still in debt to all of the sistas here.

I feel I have made lifelong friends here, many that I have yet to actually meet in person, a few that I have.

I will never ever forget how kind you all were to me during that awful post Katrina time when I was literally beside myself and, secondly, my recovery period after reconstruction in 2006.

Along the way you all have helped me face what I needed to.

It is golden to be able to let your hair down so to speak with others who can relate. Conversations with certain family members need to be much lighter, for a variety of reasons. I am lucky to be able to fully share with my actual sister, my New Orleans sister of the heart, cindy, and my husband, but theis does not extend to either my kids or my mom.

Thanks for "getting my back," sistas!
 
Good morning sistas

I am also thankful that I can come here to a place where people understand what I am going through on this journey. You are all a blessing and encouragement to me and bless you for "adopting" me too!!

Well I am :yay: and why you might ask?
1. Dh is slowly getting better so I am off the bucket duties.He took the day off to recover.
2. The wound has barely drained in the last 12 hours
3. The cipro ends tomm. Bring on the :sunny:
4. Ds 22 got a job. Its technically an internship but it lasts 4 months in the next town and its Paid no less for 8 hours a day.Good resume experience.

ds18 has his college orientation today and I forgot to mention that dh and I did go to the movies on Firday. We saw Inviction. It was diffferent for sure.

GTAGWTA. Thinking of you all.
 
Lowie, how did it go?

Laurie, spasms gone?

lmp, drainage still resolving?

How's everyone else doing?
 
Linda - how goes the remodel? I cant wait to see the pictures.
I think I forgot to answer this. Well actually I started to, then lost it somehow.

The sunroom is coming along. The windows went in last week and they moved the slider to the outside wall from the doorway between it and the kitchen. There's still a lot to do but the basic structure is up - so I snuck some furniture in there this past weekend as I had company and because it's been raining all week and the guys haven't been here, it's still there! :woohoo: So I've been busy figuring out furniture placement and colors, etc. Too cool after 3 yrs wait. We decided last week also on the flooring, the wall wood type, color, and door between kitchen and sunroom. It's really going to have an outdoor feel which is what I was going for. We've got a flagstone slate floor with beautiful earthtone colors, fir walls and ceiling with a neutral light taupe solid stain, and french doors. I really can't wait until it's finished! Pretty soon!
 
Sounds wonderful, Linda!

You sound like a kid waiting for Christmas to come!

Spasms gone, arm is sore like it went through a war.:mad:

I even went to the grocery store for a quick stop last night for the first time in two weeks. I need to pick out my produce myself. DH tries but as he only eats apples he is not very discriminating when it comes to plums, peaches, watermellon and grapes.

I only bought light weight stuff. As I told one of my co-workers-I was not going to pick up any small children either!

My friend Cindy's son is doing his last semester at LSU. his roommates that he has had since freshman year have graduated, he has a double major so he had 9 more hours to finishe. He is looking for a cheap apartment so he is staying with us until he finds one.

It is kind of a funny situation as her son ended up here at LSu, at most 2-3 miles from our house, DD20 is going to Tulane where Cindy works, and DS22 goes college at the lakefront in New Orleans about 2-3 miles from where she lived for 15 or so years.

Our kids have stayed with her on and off as well. I guess it sounds like a commune or something. Ah, the sixties, those were the days.

Like our son, our new guest can eat, 6 foot 6 inches, runs, works on habitat houses on the weekend. You get the picture.

That brawn came in handy when I got home from my grocery run-he brought all the stuff in for me.

I am still restricted in arm movement but not wearing the sling and therefore am always "squeaking" when I move it wrong and I get a pang. The nurse said there is no way I can hurt it so I guess the more movement the better as I sure don't want my arm to freeze up. Still wearing button up shirts. I can't for the life of me figure out how to put a pullover shirt on.

I guess that is something to look forward to.

I am just thankful that I am better and I am counting down to my trip next month with Cindy to WDW.

I actually have TWO reservations at Cali Grill. Cindy got worried over the weekend and went to the outlet store and picked up some sundresses at Ann Taylor and the Jones outlet.

Apparently it is a good time to shop right now. We wear summer gear pretty much all year long, so this is prime shopping period for deals that count.

GAGWTA everyone, and thanks for asking, Linda.

Nothing like feeling bad to make you feel awesome when you start feeling better. The arm spasms over the weekend were unbelievable as they were constant and lasted 7 hours. I described them to DH as labor pains in the arm. DH went:confused3

Whatever it was I think it was the turning point. maybe that is the growth hormones that is supposed to regenerate the tendon working their lovely majic.

I feel like I gave birth to the new tissue.:rotfl2:
 
Good afternoon ladies

Laurie - I am glad the shoulder is starting to turn around for you in a positive way

Linda - the drainage is back to usual today. I also looked inside. It dont look good in there.

Sigh, sigh. I told dh to look at the bandage. He said "it could be better". Yeah I know that too. I honestly dont think the cipro did anything. So I am guessing I am on the bad 50% of the surgeons "you have a 50/50% chance). I guess I am just gonna resign myself to it. But we will still pray. I am also dealing with my "operating rooms freak me out thing". I thought it was out of my mind and then of course there is some medical show on tv. I guess it will be mind over operating room for me. I also think its going to be something much worse than he thinks. It always turns out that way for some reason with me.

Has anyone heard from Sha?

I might go with dh to the dentist later. He is having 4 fillings. The sun is suppose to return here in a day or two. I guess you got alot of bad weather Linda and Ann?

Ds 18 bought home some book/pamphlet from college orientation. I think it was from english students. I read a few things. I guess I would classify it as "utter filth", they would probably say its expresssion etc. I told ds to apply to other colleges and get out of there asap. I am trying to talk him into this catholic college in ct. I read another girl on a thread I am on say its good and has a good physical therapy rep. He would get there by the ferry from here so the commute wouldnt be too bad. The dorm costs isnt too bad. We will see what happens. He needs 30 credits to apply to the state univ. and he will have that by december. But that depends if the univ. has room for next sept.

I am getting up early tomm. to make my candelight processional adr. (along with Tracey). I am hoping for Le Cellier. Then back up Chef de France or Tutto. We will see what happens.

GTAGWTA. Blessings to you all always.
 
Wow! Spend a week away from this thread and you miss a lot!

It has been a crazy few weeks here. We sent DD back to UCF on Saturday and I spent most of last week getting her ready for that. It was an easy trip for her and she loves the townhouse she is living in instead of a dorm room this year. I keep reading Facebook posts about all the cooking she is doing. Funny how she never does this when she's home. . .

DS started his sophomore year of high school on Monday. It was uneventful except for the fact they couldn't find his schedule that the students had to have to get into class. He spent most of first block in the guidance office. I don't understand why we had to go there last week to pick up his schedule when they won't let you into class unless you have the teal colored schedule they give out on the first day of classes. Ah, bureaucracy.

I am happily headed to the Mouse House today for the Trade City, USA Pin Celebration that starts today. I am going solo today, with DD joining me tomorrow and DH and DS coming up tomorrow night. My cast member friend got us a great deal at the Yacht Club. I am so looking forward to getting away for a few days. I have scans to look forward to next week. . .

Laurie - I'm glad you are doing better. I may just have to plan a day trip to WDW so I can meet you when you're there next month!

MaryAnn - Sounds as though things have been going better for you recently. Always happy to hear that!

PatsMom - You're in my thoughts and prayers. :hug:
 
Good morning ladies

Laurie - You are brave to take on that young man. I hope he appreciates it and I am sure he will love your cooking too!!

Lisa - Have a great time at the Yacht Club. Of course you know how I feel about it there:lovestruc. How many pins do you have? I have never gotten into that.

KJ - Ds22 told me he saw an...opposum in our driveway the other night:scared1:. Sorry, I dont care for those critters. I have seen some on another street once before. I dont get where all these animals are coming from. We live in a neighborhood etc. The woods/park is really far away.

Well I overslept today and got up at 7:45.:scared1: Cp bookings opened at 7 am. Well after 57..count em..the 58th phone call was a charm and then being put on hold for 35 minutes we got Chefs de France for Dec. 9th for the 6:45 show. We have to eat at 4 pm, so that is a little strange but we will deal with it. So I am happy.:)

Ds22 enjoyed his lst day at the new job. I am happy for him.

Now dh has just called me. (Oh I didnt go to the dentist with him yest. and he only got half the work done, they were having problems with him). and now he just informed me that New Zealand is having major problems so he might have to go there asap. He says he will be back for my surgeon visit on the 8th. We will see what happens. I am getting weary of all this travel as I am sure he is too. I just have to deal with the laundry.

Oh and ds20 managed to upset me again at the grocery store yest. Well low and behold my bff (alyssa mom) was there. She never shops there but needed a med that she couldnt get any where else. So she cheered me up. Even ds commented on it. (lets just say I didnt appreciate ds throwing chips into the cart from halfway down the aisle etc. , you get the picture).

GTAGWTA. Have a great day everyone.
 
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