Dis Breast Cancer Survivors - GAGWTA!

[MerryPoppins]

Be glad that things are moving quickly. Sometimes they make you wait and waiting is even harder. I feel like the quicker you can find out the results and get with doing what you need to do, the better. Sorry you're having to go through this. Hope you have good news tomorrow. I'll keep you in my prayers. And you are very correct. DCIS is an early stage and much easier to treat. I had DCIS in 2001 and I've been cancer free for 4 years now. You sound very upbeat and like you are a positive thinker. That goes a long way towards conquering any beast, including cancer. Please come back and let us know what they say.

SillyMe, maybe you need to approach your mother a different way. Have you tried telling her that you have questions that you want to ask her doctor? Maybe if you tell her that YOU NEED to talk to her doctor to feel better about all of this she'd be more willing to have you come with her. Sometimes if my mother feels like I think she can't handle something she fights me, but if I am concerned it's okay. Does that make sense? I'd probably lean towards the chemo, simply because I tend to want to do more than necessary to increase my chances. I did tell my surgeon that I knew my surgery was my decision, but "what would you do if you were in my shoes?" and she hesitated, but gave me an honest answer. You might use the same question here. What would the oncologist do if it was his/her cancer?

 

[laurabelle]

~~~***GAGWTA sistas***~~~

MNSusan- It's great that things are moving along quickly! Don't take it as a bad sign...many of us wait a long time for a dx. You have the right attitude and it's good that you have done some research on microcalcifications. I didn't have them, but my sil had a mamm come back with microcalcifications and she was told she could watch it, but she opted to have a stereotactic biopsy and it was benign. From what I understand, it means that there are changes going on in the breast, no necessarily bad, but you need to be aware. Please let us know how things turn out, I'll be praying you get good news!

SillyMe- Your mom is around my mom's age, and I know she deals with medical issues much differently than I do. The thing with cancer is, the majority of the time, there really is no clear cut answer, it's lots of historical info and educated guesses. It's really up to the patient to decide. I think that's difficult for most of us, but even harder for someone who expects the doctors to have all the answers. She could certainly opt of a second opinion, but don't be surprised if she gets the same response.

Does she say specifically what she's afraid of with chemo? Believe it or not, hairloss is the number one thing women are freaked about with chemo. I know alot of people who work through chemo with very little trouble with side effects. I happened to be a person who had trouble with side effects, mostly nausea, and they never did find drugs to work for me, but I made it through chemo. The reality is, no one knows how she'll react until she does it, though the mind can certainly play a big part. Chemo's not the enemy, cancer is. Chemo is like hiring mercenaries to help you fight. Is there a nurse who acts as a patient advocate or liasion at her hospital? Do they have an image recovery center -a place where she can be fitted for a wig, get reach for recovery services, learn how to take care of herself while she's in treatment? If she is armed with her own weapons, information, and the ability to take care of herself through this time, I'm sure she'll feel more empowered that she can do this.

 

[laurabelle]

Ann- I finished 5yrs of Tamoxifen and didn't have anything like that. Hopefully your PCP can give you an answer...

SunFloridaDisney- Sorry you had such a nasty infection but I'm glad to hear your good news!!!

 

[SillyMe]

~~~***GAGWTA sistas***~~~

SillyMe- Your mom is around my mom's age, and I know she deals with medical issues much differently than I do. The thing with cancer is, the majority of the time, there really is no clear cut answer, it's lots of historical info and educated guesses. It's really up to the patient to decide. I think that's difficult for most of us, but even harder for someone who expects the doctors to have all the answers. She could certainly opt of a second opinion, but don't be surprised if she gets the same response.

Does she say specifically what she's afraid of with chemo? Believe it or not, hairloss is the number one thing women are freaked about with chemo. I know alot of people who work through chemo with very little trouble with side effects. I happened to be a person who had trouble with side effects, mostly nausea, and they never did find drugs to work for me, but I made it through chemo. The reality is, no one knows how she'll react until she does it, though the mind can certainly play a big part. Chemo's not the enemy, cancer is. Chemo is like hiring mercenaries to help you fight. Is there a nurse who acts as a patient advocate or liasion at her hospital? Do they have an image recovery center -a place where she can be fitted for a wig, get reach for recovery services, learn how to take care of herself while she's in treatment? If she is armed with her own weapons, information, and the ability to take care of herself through this time, I'm sure she'll feel more empowered that she can do this.

She is afraid of all the side effects. The doctor was explaining to her that chemo isn't as bad as it was years ago, that there are medicines to help reduce the side effects. She said then he went on and started describing some of the side effects and it scared her.

I'm going to try to talk to her today and try to get more info out of her. Thank you all sooooo much. You've been very helpful and informative.

 

[Pea-n-Me]

GAGWTA!

Silly Me, my friend's mother said it best. She elelcted to get chemo for her colon cancer which was optional for her. She figured why not fight it with everything she could. Two years later a lung metastasis showed up. What she said to me then was astounding. She said "I'm so glad I had the chemo because if I hadn't had it and then gotten this (lung mets) I would have never forgiven myself. At least I know I gave it my all". (BTW, the lung tumors were removed and she went through a second year long round of chemo and I'm happy to report she's doing great)

There are a lot of negative associations with chemo because of the early years of therapy when chemo would just about kill you. There have been major advances in therapy since then: they give you the smallest dose to be effective yet minimize problems. Yes, you feel crappy. Very crappy. But it's short term pain for long term gain. Studies upon studies have shown the benefits of chemotherapy for all types of invasive breast cancer - it not only lessens the chance of recurrence of the cancer, it increases survival time. And four doses would take somewhere between 8 to 12 weeks or so if everything stays on schedule. My center put me on a very strict schedule of anti-emetics before and after each chemo dose and they worked very well for me. I felt blah and very fatigued, but never really nauseaus, and no vomiting. I was done with the first four doses in 9 weeks (one delay for bloodwork if I recall correctly).

As Laura said, hair loss for many women is the worst part of it. It was for me. I'll never forget standing in the boutique at Dana Farber waiting for a wig fitting and trying on turbans. My best friend was with me and I started to cry seeing myself in a turban for the first time. It was beyond belief to me that I was even there as a patient myself, but to have to have the "look" of a cancer patient just completely blew me away. But I got past it and dealt with it. My hair was gone from early February to late June, that's it. In the meantime I had a nice, comfortable wig that I wore to work and out with the kids; and some comfie cotton lovies (turbans) that I wore around the house. My DS6 at the time used to rub my head and tell me I was beautiful. And you'll never believe it but my post chemo hair is still better than ever - same color and nice and curly which I love (I used to pay a lot of money to get this same look, now it's free - hey, there's got to be some benefit to losing your hair ).

Wigs are generally covered by insurance (as a "hair prosthesis") - the key is finding one that's very comfortable. The American Cancer Society sponsors Look Good Feel Better programs which gives each participant a nice box of top quality makeup as well as tips given by a cosmetologist to help with hair loss dilemmas such as scarf tying, wig choice, etc... I went late in the game to the program but was very impressed with the nice makeup. The woman who sat across from me that night was absolutely stunning in her makeup and pretty scarf. It's one of those things you don't really notice until you go trough it. Now I can spot a bald woman a mile away even if others around me cannot. People get very clever at working with it.

I was going to mention about talking to your mother's doctor. He will probably need your mother's permission to openly discuss her case with you but I'm sure if it's ok with her he will. But remember, he is probably not getting reimbursed for this and I'm sure he's pretty busy, so have as much understanding of the issues before your visit and know what questions you want to ask or what explanations you'd like ahead of time. It would probably be best if your mother would allow you to just come to her next visit, but it sounds like right now she just needs time to absorb things on her own and work through her fears. Give her the space she needs as much as you can after you reiterate the argument for chemo and let her decide. I wonder if her reaction is in part because of her husband's late wife's experience - maybe she somehow doesn't want to put him through that again (in her mind)? What has he said in all of this?

 

[SillyMe]

GAGWTA!

Silly Me, my friend's mother said it best. She elelcted to get chemo for her colon cancer which was optional for her. She figured why not fight it with everything she could. Two years later a lung metastasis showed up. What she said to me then was astounding. She said "I'm so glad I had the chemo because if I hadn't had it and then gotten this (lung mets) I would have never forgiven myself. At least I know I gave it my all". (BTW, the lung tumors were removed and she went through a second year long round of chemo and I'm happy to report she's doing great)

There are a lot of negative associations with chemo because of the early years of therapy when chemo would just about kill you. There have been major advances in therapy since then: they give you the smallest dose to be effective yet minimize problems. Yes, you feel crappy. Very crappy. But it's short term pain for long term gain. Studies upon studies have shown the benefits of chemotherapy for all types of invasive breast cancer - it not only lessens the chance of recurrence of the cancer, it increases survival time. And four doses would take somewhere between 8 to 12 weeks or so if everything stays on schedule. My center put me on a very strict schedule of anti-emetics before and after each chemo dose and they worked very well for me. I felt blah and very fatigued, but never really nauseaus, and no vomiting. I was done with the first four doses in 9 weeks (one delay for bloodwork if I recall correctly).

As Laura said, hair loss for many women is the worst part of it. It was for me. I'll never forget standing in the boutique at Dana Farber waiting for a wig fitting and trying on turbans. My best friend was with me and I started to cry seeing myself in a turban for the first time. It was beyond belief to me that I was even there as a patient myself, but to have to have the "look" of a cancer patient just completely blew me away. But I got past it and dealt with it. My hair was gone from early February to late June, that's it. In the meantime I had a nice, comfortable wig that I wore to work and out with the kids; and some comfie cotton lovies (turbans) that I wore around the house. My DS6 at the time used to rub my head and tell me I was beautiful. And you'll never believe it but my post chemo hair is still better than ever - same color and nice and curly which I love (I used to pay a lot of money to get this same look, now it's free - hey, there's got to be some benefit to losing your hair ).

Wigs are generally covered by insurance (as a "hair prosthesis") - the key is finding one that's very comfortable. The American Cancer Society sponsors Look Good Feel Better programs which gives each participant a nice box of top quality makeup as well as tips given by a cosmetologist to help with hair loss dilemmas such as scarf tying, wig choice, etc... I went late in the game to the program but was very impressed with the nice makeup. The woman who sat across from me that night was absolutely stunning in her makeup and pretty scarf. It's one of those things you don't really notice until you go trough it. Now I can spot a bald woman a mile away even if others around me cannot. People get very clever at working with it.

I was going to mention about talking to your mother's doctor. He will probably need your mother's permission to openly discuss her case with you but I'm sure if it's ok with her he will. But remember, he is probably not getting reimbursed for this and I'm sure he's pretty busy, so have as much understanding of the issues before your visit and know what questions you want to ask or what explanations you'd like ahead of time. It would probably be best if your mother would allow you to just come to her next visit, but it sounds like right now she just needs time to absorb things on her own and work through her fears. Give her the space she needs as much as you can after you reiterate the argument for chemo and let her decide. I wonder if her reaction is in part because of her husband's late wife's experience - maybe she somehow doesn't want to put him through that again (in her mind)? What has he said in all of this?

My stepdad's been great. What you said may be one of the factors I never considered, along with her fear. From the time she was diagnosed she was very worried about him because he has a heart condition. He's had a heart attack, angioplasty and triple bypass. She told me that the day they walked out of the doctor's office after receiving her results from her surgery, SHE apologized to HIM for him having to go through this again. Of course, his response was that it is NOT her fault, she shouldn't feel that way. She asked him what she should do about the chemo and he told her that only she can make that decision.

I thought about it all night last night and DFi and I talked about it. I think I'm going to start my own notebook of questions since she hasn't, and I'm going to tell her that I am going to be there for the results of this other test. I know she won't refuse if I am adamant about it. We are VERY close and I wonder if the reason she doesn't want my sister and I at the appts is only because she doesn't want to "burden" us. She was worried about asking us to take her to her radiation treatments. I assured her, there is nothing for her to worry about. We will make it happen, she will get there, and we're more than willing to do it. In fact, I WANT to be there.

I know I keep saying it, but you cannot imagine how helpful you all have been. I don't know anyone around me who can answer my questions, as you all have.

 

[Pea-n-Me]

Ann, as you might remember, I've not taken tamoxifin so I have no personal experience with it. You might google "tamoxifin side effects bruising" and see what you can find, maybe others have experienced it.

In my mind, however, excess bruising is caused by an increased blood clotting time (ie like you'd see with blood "thinners"; the common clotting effects of tamoxifin would be just the opposite.

A few questions to think about:
Have you been taking aspirin or ibuprofin for anything lately (which would "thin" your blood)?
Did you somehow hit or squeeze your hand, even lightly, in those areas?
Do you have any pain associated with the bruising?
Are your legs achy equally, or is the achiness on one side more than the other?

I agree with your husband about keeping your team informed. They may want to run some blood clotting time bloodwork to make sure it's ok. Be aware of anything you could be doing and not realizing it that would bruise your hand. (This happened to us once when DS had a big bump on his shin that I was worried about. His bloodowork was fine and doc told me to watch and see what he was doing. That night I watched as he climbed into his bed sure enough his shin hit the wooden siderail. I padded it and the bump on his leg went away). If there's any question of a clot in your arm they can easily run non-invasive doppler studies of your arm/hand (would usually be very painful and swollen).

Good luck and let us know.

 

[Pea-n-Me]

He's had a heart attack, angioplasty and triple bypass.

Oh, he's one of my patients (I'm a cardiac nurse, LOL).

I wonder if the reason that she doesn't want my sister and I at the appts is only because she doesn't want to "burden" us. She was worried about asking us to take her to her radiation treatments. I assured her, there is nothing for her to worry about. We will make it happen, she will get there, and we're more than willing to do it.

Bingo! Very common, especially in women. I myself was the same way, would go out of my way to not "burden" others. Spent most of that year trying to re-learn that lifelong pattern of not asking for help when I needed it (always prided myself on being "strong" and was used to being the caregiver).

That's a tough one, especially where it's still so early and she's likely very overwhelmed right now. But I think a good plan is to just tell her you're going to be there for her. Period. It might relive some of the burden she's feeling. Her DH will be ok, too. These things are part of life, you can't get away from them. Actively doing something will make everyone feel better once things get rolling. Tell your Mom to think of how it would be if the shoe was on the other foot and God forbid, this was one of you. Of course she'd help and not take no for an answer. She might see how busy you are and not want to disrupt your life, but hey, that's just how it's going to be for a while. You'll all get your normal lives back in the near future. Good luck, sounds like she just needs some time.

 

[SunFloridaDisney]

SillyMe, I just wanted to add another story of chemo being different than years ago.

My best friend IRL had lymphoma back in our college days, she survived but the chemo was awful, she lost all her hair, (wore a wig to her wedding) but pulled through.

Fast forward 20 some years later, we're both in our late 40's, she gets breast cancer. The thing she dreaded the most was chemo, again, but surprisingly this time around it was not nearly as bad as she remembered, (she's told me) and in fact, she didn't need the new wig she bought. She had some hair thinning, but overall she said this has been a MUCH better experience.

Good luck to you and your mom.

 

[SillyMe]

She just called me. She's going to call her doctor now for a copy of her pathology report. After we talked she asked if I wanted to go along to her appt in 2 weeks when she gets the results from her test. She said she's going out of her mind trying to make her decision regarding the chemo, but has decided she'll just wait until she gets the results back from this test. In the meantime, I'm going to do as much research as I can.

My step-dad told her that she needs to remember what the doctor told her...to try not to think about it so much because it will make the situation worse. I told her she needs to try to keep busy for the next two weeks, so tomorrow I'm going to take her shopping with me and my girls to get her out and about.

I thank God I have the job that I have that she can call me any time she needs to talk. Thanks again.

 

[Pea-n-Me]

Wow, Kate. I know someone in the same scenario - BC now after lymphoma years ago. I believe the types of chemo are also different but I'm not surprised it was a bit easier now. Glad she's doing well.

Good luck to you, BTW. Daxx's Wife (Susan) went through a similar experience as yours two months ago or so. If you do a search of "Daxx" posts here, you can read her experience. Everything was fine for her but she was glad she had the biopsy instead of waiting.

 

[Pea-n-Me]

My step-dad told her that she needs to remember what the doctor told her...to try not to think about it so much because it will make the situation worse. I told her she needs to try to keep busy for the next two weeks, so tomorrow I'm going to take her shopping with me and my girls to get her out and about

Great plan. Get her some cheap magazines to read and some beautiful flowers, too.

 

[NHAnn]

SIllyMe...I'm so sorry I overlooked your post yesterday, I posted after it and don't know how I missed it! My best to you and your mom, you've gotten great insight and advice from the ladies here!

MNSusan....thinking of you today and sending good thoughts for your biospy today! I agree with those who ould rather have it move quickly during the screening/biopsy/diagnosis part. I expect you may have a wait for a few days at least for the pathology report. Then when you know what it is (and odds are in your favor that the calcifications are just benign changes) you can either relax ...or continue on the "one step at a time" info gathering, consults, treatment planning, etc.

Thanks for your comments on my "bruises".

And GAGWTA as well as TGIF!!!!!!!

 

[Pea-n-Me]

Ann, I did the search on bruising and apparently it can be one of the known side effects of tamoxifen. It seems as if it is one of the less common ones, though. Good you let your team know, hopefully it won't get any worse.

A woman I've been friendly with since our kids started kgarten two years ago told me this afternoon she was just dx'd with cervical ca. She's in her 30's. And DH's truck was hit by a tractor trailer this afternoon but he's ok, not sure about the truck (we just bought it in Sept). Always something, eh?

 

[NHAnn]

Linda...thank you! I was going to do a little searching tonight (DH is away on a hunting trip this weekend and I can surf to my heart's content tonight
I'd been leaning towards thinking maybe I'm on Arimidex rather than Tamoxifen, since I haven't gained any weight and I thought the joint and muscle pain was more common to Arimidex than Tamoxifen. But maybe not... Oh well...we shall see...someday!

 

[laurabelle]

Silly me- Your mom is at one of the hardest times right now..at least it was for me. Until the treatment plan is finalized, everything is up in the air, it's really stressful. I'm glad you are helping her to take her mind off of it. I hope she has a girlfriend she can talk to, and when she's ready, hopefully she will want to participate in a support group...it really helps!

Ann- I didn't gain weight on Tamoxifen. I had some bruising issues after chemo, but it subsided, and I didn't relate it to the Tamoxifen, since it went away. One ongoing side effect I had was toe cramps! My potassium level was fine, my onc said it's just one of the things Tam. can do. I'll be going on one of the aromatase inhibitors- either Arimidex or Femera -after I have my surgery. I guess I'll have to take a look at the side effects too...

Linda- I'm sorry...

 

[suzadrew]

I haven't read all the posts yet, but I will. Every one of them because they are suddenly important to me. I am currently waiting for results from my mamogram & ultrasound. I found a lump (small grape size) and was sent off for immediate testing. The results should be in on Tuesday or Wednesday. - Problem I'm supposed to leave to go on my first Disney cruise with my DS11 on Thursday. I'm not sure what to expect but wow what an emotional feeling.

I'm looking forward to reading this thread for inspiration (& reality) to get me through the weekend.

So until I read more posts, & get to know you all better I'll just say hi.

 

[Pea-n-Me]

Hi suzadrew, welcome. Your post brought back memories. I found a lump shortly before our first Disney Cruise, too, but luckily it was a few weeks before. My biopsy results/diagnosis, though, came 12 days before the cruise on which our twins would be turning 6. If it's any consolation, my doctors advised me to go and have a good time, which I did. (I also have some information I don't want to post publicly about DCL policy, but if you didn't buy the insurance, let me know, the information might be helpful to you).

Timewise, it might be a little more tricky for you if they tell you you need a biopsy. I'm usually of the mind that you shouldn't wait on things, but I doubt a week would make all that much difference if you decide to cruise first (or you could always delay the cruise for another time when you're in a better frame of mind - very individual decision). What my doctors said at the time was that I shouldn't rush to make decisions, that I should take my time, which I did.

Glad you found the thread. I think you will find some good information and support here. Prayers going out to you.

 

[NHAnn]

Hi suzadrew, sorry to have to welcome you to our group. Try not to overload on info and anxiety as you wait for the results of the initial testing. Easier said than done as we all know too well. We're here for you.


Hope you all are having a good weekend~~ GAGWTA!

 

[Pea-n-Me]

Ann, is it snowing up north? I couldn't believe it, but we had snow here this afternoon! I guess this means I have to put my shorts away.