Dis Breast Cancer Survivors Part IV - GAGWTA

[NHAnn]

Hello ladies....although I am not here much in recent months I am thinking of you all, all the time.
My screening mammo and checkup with surgeon last month were fine, all is well in that regard.
Avery is hanging in there pretty well since Xmastime, has had some interruption of the treatment schedule- but due to low counts as opposed to infection or more serious things.
I do have some bad news though hate to be a downer, but need to share...
2 weeks ago my BIL was in a serious car accident and passed from his injuries 36 hours later. This is the spouse of my sister who lives an hour from me here in NH....snappy and Sha met her a few years ago at the RFTC at WDW. It has been a blur the last 2 weeks...I was with her 24/7 from the ER until a couple of days after his death when our Colorado brother and sis and their families arrived to stay at her home with her and then I "commuted" to be w/ her and the rest of the family. I am on pins and needles waiting for her call this morning because she had a 6 month f/u mammo scheduled an hour ago for calcifications they are "watching". She is one of the strongest people I know, but please God she does not need any more stress right now. Her PCP got her set up right away with a counselor, they had a good initial meeting last week and she has one this afternoon so that is good timing.

Linda I am so sorry about your friend's son. Everyone grieves differently but I hope she does not stay secluded for too very long. It is so hard to know what is the right thing to do/say.

Lisa....I am so sorry you are having such a hard time and sending you strength and good wishes..........

Keeping you all close to my heart always!!!
GAGWTA

 

[snappy]

Ann, I am glad your test results were favorable, and that Avery is hanging in there. I loved the post he did himself on caring bridge. Quite a guy, guide a family.

Please extend my condolences to your dear sister. I remember her well, and also remember thinking at the time how wonderful it was that both of your sisters joined you for that race and that weekend.

Like now, it is obvious your family members are truly there for each other.

I am praying she is told the calcifications are not suspicious and she does not need more testing.

Please let us know when you can.

 

[snappy]

Pictures from youth group trip still in progress:

 

[NHAnn]

Just got the word her mammo was stable....now she's good for another year as far as f/u . Thank God.
Thank you Laurie---that trip was special in so many ways. When I passed on your condolences she remembered you as the "hankie dance" lady! I know you would not mind our giggle at that, under the circumstances

LOVE the pic of your DD and friend.....brings a smile to me always seeing "kids" of all ages enjoying WDW

 

[snappy]

Ah yes our "second line" dance to live jazz at the Louisiana booth at Food and wine. Yes that was a moment, wasn't it and I have the pictures to prove it!!!

And the other moment at the race site towards the end when we could hold back tears was one I won't forget either.

I always get a giggle myself that you call that craziness the hankie dance.

I haven't the foggiest why it is called second lining but I am sure there is a historical perspective lurking somewhere in there.

I share in your relief that your sister's mammogram was stable and appreciate you posting that good news, as you say, under the circumstances.

Thanks for commenting on DS16's pic. It took me long enough to figure out how to post it. I deleted and editing it more times than I will ever admit.

I love that my daughter is sending me pictures during her trip, even though it is just iPhone pictures. I have a cute one with her and Peter Pan (their hair is the same color, lol, and his does not look like a wig for a change). I have tried unsuccessfully to resize it from huge and post it but I am going to try later. Gotta go do payroll of the troops at work are going to stage a rebellion.

If anyone else is using a mac, there is a new beta ap on apple.com that allows you to "text" and add pictures to your texts from your mac. My brother saw it Thursday when it first appeared on the apple website, and I downloaded it Saturday. My sister, my mom, my brother and I are all using it. Still has bugs but it sure is easier than texting from an iPhone.

I think my one-to-one guy at the Apple store Saturday was impressed I even knew about it. Thank you brother. I have been getting an enormous number of texts since Saturday.

Too bad my mac is too big to carry around with me, lol.

 

[luvmarypoppins]

Linda - so sorry to hear of your friends loss of her ds. Will keep her in my prayers. As the others have said, everyone grieves so differently. When my sis died m mom wanted to be surrounded by people. Its so good that you want to be there for her when she is ready. I guess if she doesnt want to do anything face to face, maybe an e mail? Could you just leave a dinner on her porch etc. if she doesnt want to talk. I am sure she knows she has a good friend in you.

Anne - so sorry about your bil. Saying a prayer for you and the family. How wonderful you were there to support your sis and so glad to hear her tests results are good. I have been following Averys caring bridge page too and keeping him in my prayers.

Laurie - love the picture of your dd. Looks like she is enjoying herself and see that the lanyards you made/suggested are being put to good use.

 

[annrae]

I am so very sorry to hear about your BIL's passing. I'm hoping your sister will find the strength she needs in the coming days - she has a wonderful family surrounding her in her grief and this is so important.

I hope Avery is doing well this week. His attitude is so positive and he is quite the writer also.

Take care and please know I am thinking of you during these very sad days.

Barbara

 

[annrae]

I know there is nothing worse than losing a child and I am so sorry to hear about your friend's loss. Many times when a tragedy happens, it is after the first few weeks that a friend is very much needed and she will need you at that time Linda. How very sad this is and my heart goes out to you and their family.

Hugs,

Barbara

 

[annrae]

What a sweet picture of your DD and her friend at WDW. Love their ears! Aren't these phones wonderful - it's always nice to talk to our children but to also see them is extra special. It sounds like she is having a wonderful time.

Hugs, Barbara

 

[luvmarypoppins]

Good afternoon sistas

Laurie - Happy Mardis Gras., Please excuse me, as I dont know what the proper greeting is.

I still have some cold symptoms. Now ds20 is getting the cold.

I ended up taking ds22 to college today. Not my normal day but the lovely Emily was busy I guess.

Tonight dh comes home, yeah. I am working on the disney plan. I am thinking of making some adrs tomm. as I read the Disney site will be down on thurs. We are turning into restraunt creatures of habit. I am not adventurous and stick to the tried and true. We did try Rose and Crown in December. It was o.k.

GAGWTA. Thinking of you all.

 

[snappy]

Peter Pan and friend

 

[MerMom60_94]

Good morning ladies. I am just hopping back on to thank you all for being there for me a couple of months back. This thread was the first place I thought of to turn to for advice because I knew there would be a wealth of information. I had a mastectomy two weeks ago and am going through the process of reconstruction. We ended up cancelling the cruise we had booked with the logic we could always rebook once we had a better sense of how things were playing out. So, today I go for a follow-up appointment with the oncology surgeon and should have the answers I need. The pathology for the lymph nodes came back negative so I am guessing I won't need chemo and since I had a mastectomy I shouldn't need radiation either. I will find out for sure today, though. I am thinking at the most I will likely be put on some follow-up meds like tamoxifin. My surgeons have done great work and I am not as deformed looking as I had feared. I am sure once the final implant is in I will look fairly normal. I look forward to having this chapter behine me. Thank you all, though, for being so supportive and helping me through this.

 

[hulagirl87]

Hello I had posted back in November that my mom had just been diagnosed with breast cancer and how I could help her when she had her surgery and her recovery. She had a double mastectomy in December and did not have reconstruction. She is recovering slowly and has good days and bad days. She went to an oncologist who explained to her about hormone therapy and also about chemo. She was shocked to hear that chemo isn't necessary but can be an additional treatment on top of the hormone therapy for perhaps a better chance that the cancer will not reoccur. Because there were lymph nodes involved, she did an Oncotype test that tested the lymph node to tell her a score and how much chemo would benefit her. She was on the low end of the middle range with a score of 20. Now she is trying to figure out what to do about chemo and also regarding the hormone therapy, which medicine to take for the next 5 years, either arimidex and tamoxifen. I guess each of them has some side effects that are not ideal.

She had gotten a second opinion from a doctor that she really liked and that was last Thursday. That doctor told her to call her on Friday with the results of her oncotype score and that she would be more than happy to talk to my mom about her options. My mom called her on Friday and did not hear back. She gave her the benefit of the doubt being a doctor and super busy and all and then called back and left another message yesterday. Unfortunately that doctor has not called my mom back. My mom is really upset that no one wants to help her. She feels scared and alone and I'm not sure how to help her. She doesn't know if chemo is the right choice. She doesn't want to go through all the side effects if it really wouldn't benefit her in the long run. And she doesn't know which hormone therapy medicine to take. I wish that I had the answers to give her. If any of you have any advice it would be most appreciated.

Sorry this is so long but I'm glad that you are all here to listen

 

[snappy]

Good morning ladies. I am just hopping back on to thank you all for being there for me a couple of months back. This thread was the first place I thought of to turn to for advice because I knew there would be a wealth of information. I had a mastectomy two weeks ago and am going through the process of reconstruction. We ended up cancelling the cruise we had booked with the logic we could always rebook once we had a better sense of how things were playing out. So, today I go for a follow-up appointment with the oncology surgeon and should have the answers I need. The pathology for the lymph nodes came back negative so I am guessing I won't need chemo and since I had a mastectomy I shouldn't need radiation either. I will find out for sure today, though. I am thinking at the most I will likely be put on some follow-up meds like tamoxifin. My surgeons have done great work and I am not as deformed looking as I had feared. I am sure once the final implant is in I will look fairly normal. I look forward to having this chapter behine me. Thank you all, though, for being so supportive and helping me through this.

Glad to hear your are recovering and that reconstruction is moving in the right direction. I hope you received good news yesterday regarding further treatment.

I remember how you were struggling with the decision not he cruise. I think you made the right decision and will enjoyed the cruise later all the more.

Thanks for the update.

 

[snappy]

Hello I had posted back in November that my mom had just been diagnosed with breast cancer and how I could help her when she had her surgery and her recovery. She had a double mastectomy in December and did not have reconstruction. She is recovering slowly and has good days and bad days. She went to an oncologist who explained to her about hormone therapy and also about chemo. She was shocked to hear that chemo isn't necessary but can be an additional treatment on top of the hormone therapy for perhaps a better chance that the cancer will not reoccur. Because there were lymph nodes involved, she did an Oncotype test that tested the lymph node to tell her a score and how much chemo would benefit her. She was on the low end of the middle range with a score of 20. Now she is trying to figure out what to do about chemo and also regarding the hormone therapy, which medicine to take for the next 5 years, either arimidex and tamoxifen. I guess each of them has some side effects that are not ideal.

She had gotten a second opinion from a doctor that she really liked and that was last Thursday. That doctor told her to call her on Friday with the results of her oncotype score and that she would be more than happy to talk to my mom about her options. My mom called her on Friday and did not hear back. She gave her the benefit of the doubt being a doctor and super busy and all and then called back and left another message yesterday. Unfortunately that doctor has not called my mom back. My mom is really upset that no one wants to help her. She feels scared and alone and I'm not sure how to help her. She doesn't know if chemo is the right choice. She doesn't want to go through all the side effects if it really wouldn't benefit her in the long run. And she doesn't know which hormone therapy medicine to take. I wish that I had the answers to give her. If any of you have any advice it would be most appreciated.

Sorry this is so long but I'm glad that you are all here to listen

Sorry your mom is still faced with so many decisions.

I think it is good she had the Oncotype test. This was not available to me back in 2004.

I also think that, although the second doctor had not called her back at least as of yesterday, that it is still wise to have that second opinion. Down here, it was Mardi Gras and a lot of locals plan long trips at this time. In the rest of the country I wonder if the same is true with President's day.

I would advise your mom to call the second doc again, and if she does to respond, see about a second opinion with another doc.

Especially when she had lymph node involvement, I would think hard and long about a decision not to have the chemo, regardless of what the Oncotype test Indicates.

I feel sad that she feels alone and that no one wants to help her. These are difficult decisions, and this prolonged waiting for guidance and being unsure is very stressful.

As far as the hormone therapy, I think the oncologist should guide her. There has been a lot of studies done on the different meds. I would ask the doctors very specifically about the risks/benefits. Ultimately, the decisions are up to the patients, but she needs all of the info on both to make an informed choice.

She should take all the time she needs to make the decisions and not rush into a decision on either the chemo or the hormone therapy.

Please give her my best. Let us know what she does decide to do. You can be sure that we care here.


Good luck.

 

[love2disney]

Hi everyone. Just found this thread. Oh boy do I need someone to talk me off the ledge. They found abnormalities in my left breast over valentines day. The radiology report got classified a Birad5 which seems to be the magic word around me to send everyone in a tizzy, had a biopsy on Monday which it looks like the doctor did not get the needle deep enough and ended up sending only fatty tissue for pathology. He then wanted me to setup surgery this tuesday to get the lump out and see what it says. I am not sure whether I still like this first doc or want him operating on me. I have an appointment for another doc Monday morning. I do not know of how to make sure I get the best doc my insurance and driving distance can afford. Any thoughts? Tech details they found 3 lumps 5cm, 3 cm and 2 cm in size and some smaller ones. There is no calcification and my lymph nodes under my left arm are enlarged too. I freaked out the day of the mammogram but now am uncannily calm. Is that how it went with all of you? I have two kids and they are the ones I am most worried about. At 33 yrs of age I never thought cancer would come in play. 10 days back I had the seemingly perfect life and now I don't know anymore.

 

[Pea-n-Me]

Good morning ladies. I am just hopping back on to thank you all for being there for me a couple of months back. This thread was the first place I thought of to turn to for advice because I knew there would be a wealth of information. I had a mastectomy two weeks ago and am going through the process of reconstruction. We ended up cancelling the cruise we had booked with the logic we could always rebook once we had a better sense of how things were playing out. So, today I go for a follow-up appointment with the oncology surgeon and should have the answers I need. The pathology for the lymph nodes came back negative so I am guessing I won't need chemo and since I had a mastectomy I shouldn't need radiation either. I will find out for sure today, though. I am thinking at the most I will likely be put on some follow-up meds like tamoxifin. My surgeons have done great work and I am not as deformed looking as I had feared. I am sure once the final implant is in I will look fairly normal. I look forward to having this chapter behine me. Thank you all, though, for being so supportive and helping me through this.

Sounds good, thanks for the update!

 

[Pea-n-Me]

Hello I had posted back in November that my mom had just been diagnosed with breast cancer and how I could help her when she had her surgery and her recovery. She had a double mastectomy in December and did not have reconstruction. She is recovering slowly and has good days and bad days. She went to an oncologist who explained to her about hormone therapy and also about chemo. She was shocked to hear that chemo isn't necessary but can be an additional treatment on top of the hormone therapy for perhaps a better chance that the cancer will not reoccur. Because there were lymph nodes involved, she did an Oncotype test that tested the lymph node to tell her a score and how much chemo would benefit her. She was on the low end of the middle range with a score of 20. Now she is trying to figure out what to do about chemo and also regarding the hormone therapy, which medicine to take for the next 5 years, either arimidex and tamoxifen. I guess each of them has some side effects that are not ideal.

She had gotten a second opinion from a doctor that she really liked and that was last Thursday. That doctor told her to call her on Friday with the results of her oncotype score and that she would be more than happy to talk to my mom about her options. My mom called her on Friday and did not hear back. She gave her the benefit of the doubt being a doctor and super busy and all and then called back and left another message yesterday. Unfortunately that doctor has not called my mom back. My mom is really upset that no one wants to help her. She feels scared and alone and I'm not sure how to help her. She doesn't know if chemo is the right choice. She doesn't want to go through all the side effects if it really wouldn't benefit her in the long run. And she doesn't know which hormone therapy medicine to take. I wish that I had the answers to give her. If any of you have any advice it would be most appreciated.

Sorry this is so long but I'm glad that you are all here to listen

Snappy answered much the way I would. My diagnosis was in 03 and once they saw my nodes were positive I was getting the max chemo, no other decisions really involved, which was probably easier in a way. I do remember my oncologist saying, "The time to fight it is now", so I was good with my course of treatment. The one thing I knew for sure was that I didn't want to have any regrets. I don't know if that's helpful at all. I would definitely keep trying for some guidance - your mother shouldn't feel alone in this. Hopefully it was just the holiday weekend that made people difficult to get a hold of.

I can't help on the hormonal meds as I was triple negative and wasn't eligible to take them. Hopefully others here will chime in on both of these issues for you. Please give your mom a for us.

 

[Pea-n-Me]

Hi everyone. Just found this thread. Oh boy do I need someone to talk me off the ledge. They found abnormalities in my left breast over valentines day. The radiology report got classified a Birad5 which seems to be the magic word around me to send everyone in a tizzy, had a biopsy on Monday which it looks like the doctor did not get the needle deep enough and ended up sending only fatty tissue for pathology. He then wanted me to setup surgery this tuesday to get the lump out and see what it says. I am not sure whether I still like this first doc or want him operating on me. I have an appointment for another doc Monday morning. I do not know of how to make sure I get the best doc my insurance and driving distance can afford. Any thoughts? Tech details they found 3 lumps 5cm, 3 cm and 2 cm in size and some smaller ones. There is no calcification and my lymph nodes under my left arm are enlarged too. I freaked out the day of the mammogram but now am uncannily calm. Is that how it went with all of you? I have two kids and they are the ones I am most worried about. At 33 yrs of age I never thought cancer would come in play. 10 days back I had the seemingly perfect life and now I don't know anymore.

Hello again from the other thread. I've been thinking about you. Glad you found your way over.

You said it was a breast surgeon that did the biopsy, right? I have a hard time believing that a breast surgeon (is he board certified?) would screw up a biopsy. They spend their whole careers working with breast tissue! And they come to know it very well! The only thing I could think of when I read your update was something my oncologist used to say, while shaking her head: "Stranger things have happened". Perhaps the anatomy of the lump was strange or unusual, who knows. I'd also be curious to know what he said about it? It seems like the other docs were quick to throw him under the bus when it could have been that he didn't necessarily screw up. But all of that I would have to figure out hearing how he explained it, looking at his credentials and recommendations, see what my gut feeling about him was, etc., to figure out if I was done with him or not. It's impossible to know from here, only you can know. Is he associated with a major medical/oncology center? If you really have no confidence in him then you almost have no choice but to go with someone else. But you'll have to look at all the factors involved.

I still think it's not unfathomable that you may end up with good news. I have been in a similar situation. My own breast surgeon told me a spot on my mammogram looked like a new cancer. I was devastated as I'd just finished treatment and figured if it could survive all they'd thrown at me, I was in real trouble. My biopsy came back negative. But like with you, they said they wanted to take it all out and biopsy it anyway. When I showed up for that surgery they could no longer find the spot. My surgeon was standing there observing and she still offered to take it out. I was like, "Take what out?" At any rate, it was a nice relief to find out it wasn't a new cancer after all. I hope that when all is said and done, you might have similar news. It may be unlikely the lumps will disappear but it could be that they're not cancerous. At least I hope so.

Yes, I think many of us were shocked to hear we had cancer, with the exception perhaps of those who had family histories. Many of us had young children as well at the time of diagnosis. It stinks to go through. But yes, it's like a grieving process, going through all the same stages but instead of a person, we're grieving the perceived loss of our health and a premature view of our own mortality, etc. The first days are pretty hard. Let us know when you hear more or make additional decisions. We will travel this road with you whatever happens

 

[Sha]

Good morning ladies! Hope you are doing well. I am suppose to be doing paperwork as I am running away later today. R and I are meeting 1/2 way for the first time. Looking forward to it as I have had a rough couple weeks at work.

I want to share a new post from Mel. Her staff and some friends jumped out of an airplane recently that was a fund raiser for Mel and the hospital she was getting a lot of stuff done at. I was surprised that she didn't post about that BUT then I read that there is going to be something in the Guardin soon.

http://www.warringtonguardian.co.uk/yoursay/blogs/melanie_oneill/9547652.Discovering_a_different_approach/?ref=fbrec

Hulagirl, my mom too didn't have chemo or radiation. She didn't get on arimidex until she had Breast Ca the second time and had her second mastectomy. My aunt (my moms sister) has been on both tamoxifen and arimidex. For her.. the tamoxifen had stronger side effects of hot flashes then the arimidex. Everyone is different though, so keep that in mind. My mom hasn't experienced any side effects that I am aware of. I am sorry to hear that the other doctor hasn't called her back. I think they forget that the patient may have feelings that they may feel abandoned (for lack of a better word at the moment). I am a bit agressive when it comes to my mom and doctors. If you are on her record as someone who can call and talk to the doctor, go ahead and place a call too. Just leave a message that your mom is getting very anxious about not getting a follow up call that the doctor said would do, that you both understand the doctor may be busy, but she is weighing on her. That if an appointment has to be scheduled to get the info, then lets do that. I know that results come in and they get a little buried from what I have heard from friends that work in the offices. They don't mean for them too, but it happens. Still no excuse to not touch base and say, we haven't forgotten about you. I have also voiced concerns with the doctor themselves.

love2disney welcome to the thread. Pea-n-me has said a lot of great things. Only you will know how you feel about the doctor and can make a decision on what to do. I think your emotions are perfectly normal. Don't second guess yourself.

Mermom60_94 glad to hear the update also.

Laurie... love to see the pics from DD's trip. Was hoping to have been able to have gone down last night to see a friend from Metarie but couldnt.

Got to get the work done... see you all later!!!