Dis Breast Cancer Survivors - GAGWTA!

[snappy]

Congrats on the good night's sleep, Ann. It can make all the difference in your frame of mind if you sleep well.

On the hot flashes, mine started about 4-6 weeks after I started tamoxiffen.
I think I had one more cycle before menopause hit me. It really has not been bad for me. I guess I was about there anyway since I was 51. I am having slight problems now and then although I had no problems during the winter. It's just that it's so hot and humid here during the summer. I basically wear cotton clothes now. I can't wear socks to bed, even during the winter. I bought new cotton sheets and a new light weight comforter that also cotton for the most part.

 

[MerryPoppins]

Ann, that's wonderful that you slept well last night! That speaks well for how you feel about your decision. Good for you. Keep up that positive thinking. I think it was the waiting and wondering if I was making the right choice that made me unable to rest.

I've been taking Tamoxifen for 3 years and still have not completely gone through menopause. My cycle is longer and more irregular. I do pretty well with the hot flashes except in the humid summer weather. Well, I guess I do sort of freeze the family, but they're living with that. I use Replense for dryness and it helps, but I still experience some loss of libido. My doc doesn't want me to try hormone replacement for obvious reasons and she's not crazy about natural hormones either. Anyone have any suggestions? Anyone have any good books to suggest on coping with menopause syptoms?

 

[JennyMominRI]

Jenny, (the million question post!)
That sounds so similar to two of the chemo drugs I got. Adriamycin can cause heart toxicity and Taxol can cause neuropathy. So far my heart is ok, I do have some neuropathy problems, but it's not bad.

How often do you you get your cocktail? Is it an infusion? How do they follow your progress? And are they doing MUGA scans for your heart? Does your hospital treat you well? I was just thinking about an article I read about a cancer center in Syracuse NY that does a great job of working with patients holistically. They can get a massage before their infusion, meet with a nutritionist, take yoga, ect... it sounded heavenly. I wish my hospital did that! Every hospital should!

Lots of questions and lots of answers...Chemotherapy at it's most basic is chemical therapy..Although it's normally associated with Cancer,it can apply to other things. Essentially most AIDS patients are on a form of chemotherapy.. It's been stated in my records that I've been recieving chemotherapy since 1997...It's an every day thing..I take it in pill form daily although some take injections etc.. I have to take Zofran because this set of pills is so toxic. It was making me sick every day..Until the Zofren I was throwing up 2 or 3 times a day..I am taking some older more toxic AIDS meds..The reason for this is my mini -strokes in 2003..Basically the AIDS meds can get rid of the virus in the bloodstream...The HIV then has less places to go and often attacks internal organs..In my case It went after the heart and brain..I have to take anti-HIV meds that can cross the brain barrier and kill the HIV there..They are horrible,but the alternative is possibly more strokes,dementia, further heart damage etc.
The other problem is that since most of the textbook HIV killers like Pnuemonia are now treateble HIV attacks in other ways.. Cancer is the current killer of people with HIV.. I'm very high risk for cervical cancers and lymphomas//It's a lovely disease with cancer as a symptom.
I'm lucky,My heart disease has stayed the same for a while..The average person with Cardiomyopathy lives about 5 years without a transplant( No heart transplants for HIV pos people)... I'll hit the 5 year mark in the fall.. I've done so well that I just need echo's on occasion...I have an ejection fraction of 40-50%( a normal heart is at around 60%)
The neuropathy stinks..It's th eone thing that actually effects me on a day to day basis,although lately I'm losing a lot of hair.. I'm not sure why..And there's no end for me.. I'll probably take these pills for the rest of my life. Eventually,it will probably be the heart or Cancer of some sort that kills me

 

[NHAnn]

In my handy-dandy folder of fact sheets and "stuff" I got on Tuesday, the nurse added one on Peridin-C when we were discussing the need for me to go off the estradiol, which I'd been taking since my total hysterectomy in 2001. She said the radiation and medical oncologists here approve its use to alleviate hot flashes ...Apparently it's marketed for all menopausal women. Here's a link if you are interestedPeridin-C

Jenny...

 

[Dan Murphy]

I recall when Marie was getting her Adriamycin, that inky red bag of stuff. The nurse would put on these elbow lenth, thick black rubber gloves, looked like they were for handling acid in a toxic spill. The first time I asked her why the big gloves. She said it would give a terrible burn if it got on your skin. I said, and you are going to put that in Marie??'

's Jenny, and everyone here.

 

[JoannaOhio]

I just discovered this thread tonight - read all nine pages - and I'm feeling pretty overwhelmed at the moment. I may write more about my experience on another day. Just wanted to say that my mastectomy was a little over eleven years ago - followed by eight months of chemo. (It was supposed to be six months, but my body was never ready for the next round on schedule.) I had previously had a hysterectomy (including ovaries) and was on estrogen replacement therapy, which I had to stop cold turkey. I remember thinking that it wasn't fair to have the double whammy of chemo and instant menopause. (Like having cancer and a mastectomy was "fair"??? Funny how the mind works in such situations.)

I journaled throughout the process - and I had copies made that I gave away at my booth at women's festivals and craft fairs. I'm not sure where any extra copies are right now, but if anybody is interested, I could make the effort to find them. Although I believe that every woman has the right to choose for herself, I acknowledge that I have pretty strong feelings about not having any kind of reconstructive surgery. I am a one-breasted woman, and I feel very comfortable not trying to hide the fact. I realize that there are many women for whom this choice wouldn't be comfortable, but I think it's an option worth at least considering.

I have lived with CFIDS (Chronic Fatigue Immune Deficiency Syndrome), Fibromyalgia and Arthritis in the years since my surgery, and I have found many "sisters" with similar experiences - but I am a 65-year-old SURVIVOR, and I have every intention of being around for at least another 30 years.

 

[Tiger Fan]

NHAnn - glad you slept well and that the hot flashes haven't gotten to you yet. I had a full hysterectomy at 31 (I'm estrogen receptor positive too and my onc is very aggressive and felt we had to get that done right away). At my first chemo break we got my blood levels up and went ahead with it. Being so young and having such a radical surgery with then not being able to have any hormones I had a few months of pretty bad hot flashes, but it ended actually pretty quickly and I now have no problems whatsoever.

Laura - as far as genetic testing my sister and I went for the counseling prior to the testing after I was diagnosed. She went very deeply into our family history on both sides and although there are several family members with breast cancer, and my grandfather also had prostate cancer (they think they might be related) and even with me being so young, she did not feel that there were enough in my family to say that she really thought it was genetic. The initial testing was going to be around $3000 and we went back and forth and finally decided not to proceed. If I had been tested then my sisters and my mom could have gotten testing for only about $500 each (she said once they actually do your test they make an example test based on your results and test your family members from that, so it's the initial test that is so costly and then it's much easier and cheaper to test the others). So far none of us have regretted me not getting the testing. My middle sister was the one that was so in favor and they explained that she can go ahead and be tested if she wanted, but ended up deciding against it. She is diligent in her regular mammograms (she's only 31), but has been getting them since about 4 months after my diagnosis. She has had one lump that showed up and had to have a needle biopsy, but it was benign - can you imagine how nuts we were when that happened. In addition, just last month my mom had her first colonoscopy (sp?) and they had to remove a large pollup that had "abnormal cells" that the doctor said would absolutely have turned into cancer, so now she has to be checked regularly for that

Dan - as for the nurses "gloving up" and then injected us with poison - it can be quite upsetting. I was the same way when I saw them and they explained because it was "so toxic", then proceeded to pump me full of it !

I'm really enjoying this thread everyone.
Lisa
Tiger Fan

 

[MerryPoppins]

I am a one-breasted woman, and I feel very comfortable not trying to hide the fact. I realize that there are many women for whom this choice wouldn't be comfortable, but I think it's an option worth at least considering.

I agree. I had my extender inserted when I had my mastectomy. In my mind I had to have reconstruction to feel whole again. In the following weeks I had to go to the doctor's office for them to inject saline into the extender. After a number of injections the doc decided that the extender had broken and was leaking. They wanted me to have surgery on Christmas Eve (which I refused) because I needed it replaced as soon as possible. When I asked why there was a hurry, they told me that scar tissue forms around whatever they put in your body. They didn't want it to grow onto my extender, which didn't make sense because they had always intended to remove it after my muscles stretched.

Anyway, this led me to question why it had burst and what were the chances my actual implant would do the same thing? When they saw that I was 40, they told me I'd certainly have to replace my implant sometime during my remaining lifespan. They don't last forever. So won't they have the same scar tissue that you warned me about?

Then I started to do my homework. I saw photos on the internet that I didn't like. Even the saline implants can go wrong. Again, I'm not trying to scare anyone. Probably most implants are fine. I know that. But remember, I'm not a gambler. I figured that I'd be happier with just me the way I am and no more surgeries, so I had the extender removed period. My mom hates it. She still wants me to have reconstruction, but I'm comfortable. It's not for everyone, but it works for me.

 

[NHAnn]

JoannaOhio! I just noticed on the MCMCP thread on the Attractions board, that you will be there the same night as I have tickets for - 12/20! And
I think smeone else has posted on this thread that they will be at WDW around that time too, but the name escapes me at the moment...sorry. Wouldn't it be neat to have a little DIser and Survivor meet ?

On the reconstruction issue....
it's very evident to me just in the last few days, on this issue (as well as all the other decisions that have to made for treatment) that there's not always a "best" or "right" or "one size fits all" (no pun intended) approach to any of this. I am feeling in my own mind right now that if I ever did decide on a mastectomy at any point, that I would not get immediate reconstruction, that I'd want to wait and explore it more thouroughly after seeing how I felt and looked and adjusted and then decide.

 

[Pea-n-Me]

Saw an encouraging article in the paper today. The news is especially good for those of you with hormone positive receptor status on tamoxifin.

http://www.foxnews.com/story/0,2933,156467,00.html

 

[JoannaOhio]

I don't want to get on a soapbox on this thread - I just want to say that not having reconstructive surgery is a viable option - and that most women in the midst of all the decision-making after being diagnosed with breast cancer do not take the time to thoroughly explore the pros and cons of implants. For a year or so after my mastectomy, I went to a couple different survivor support groups, and I must say that even the women who proclaimed their complete satisfaction with their reconstructive surgery would eventually come down to a "but....."

IMHO, if a woman wants to look "normal" outside of her bedroom, she can wear a prosthesis in her bra - even in her bathing suit - without having a "foreign" object inserted into her body. For those of us who are older and/or have saggy breasts, doing reconstructive surgery on the affected breast usually also involves surgery on the "healthy" breast, so the two will "match". And they will only "match" until the non-implanted breast starts to sag with age.

Again, I'm not trying to push my choice on anyone else, but if you would like to have more information about some of the "cons" of reconstructive surgery, and some intimate "pros" of not having it - (actual stories from other survivors I've met, not just my opinions) - feel free to PM me with any questions or comments.

 

[laurabelle]

Lots of questions and lots of answers...Chemotherapy at it's most basic is chemical therapy..Although it's normally associated with Cancer,it can apply to other things. Essentially most AIDS patients are on a form of chemotherapy.. It's been stated in my records that I've been recieving chemotherapy since 1997...It's an every day thing..I take it in pill form daily although some take injections etc.. I have to take Zofran because this set of pills is so toxic. It was making me sick every day..Until the Zofren I was throwing up 2 or 3 times a day..I am taking some older more toxic AIDS meds..The reason for this is my mini -strokes in 2003..Basically the AIDS meds can get rid of the virus in the bloodstream...The HIV then has less places to go and often attacks internal organs..In my case It went after the heart and brain..I have to take anti-HIV meds that can cross the brain barrier and kill the HIV there..They are horrible,but the alternative is possibly more strokes,dementia, further heart damage etc.
The other problem is that since most of the textbook HIV killers like Pnuemonia are now treateble HIV attacks in other ways.. Cancer is the current killer of people with HIV.. I'm very high risk for cervical cancers and lymphomas//It's a lovely disease with cancer as a symptom.
I'm lucky,My heart disease has stayed the same for a while..The average person with Cardiomyopathy lives about 5 years without a transplant( No heart transplants for HIV pos people)... I'll hit the 5 year mark in the fall.. I've done so well that I just need echo's on occasion...I have an ejection fraction of 40-50%( a normal heart is at around 60%)
The neuropathy stinks..It's th eone thing that actually effects me on a day to day basis,although lately I'm losing a lot of hair.. I'm not sure why..And there's no end for me.. I'll probably take these pills for the rest of my life. Eventually,it will probably be the heart or Cancer of some sort that kills me

Jenny,
You are doing incredibly well for all your body's been through! I'm praying you continue to shatter those averages !

 

[laurabelle]

I so agree with what you all are saying about our choices. Cancer treatment is such an individual thing, and alot of it has to do with how each of us feels about what goes on with or into our bodies. What you are willing to live with ...or without... alot of it boils down to quality of life issues. Following your heart is essential! You have to do what's right for you and what makes you feel like a survivor !

 

[Feralpeg]

I don't want to get on a soapbox on this thread - I just want to say that not having reconstructive surgery is a viable option - and that most women in the midst of all the decision-making after being diagnosed with breast cancer do not take the time to thoroughly explore the pros and cons of implants. For a year or so after my mastectomy, I went to a couple different survivor support groups, and I must say that even the women who proclaimed their complete satisfaction with their reconstructive surgery would eventually come down to a "but....."

IMHO, if a woman wants to look "normal" outside of her bedroom, she can wear a prosthesis in her bra - even in her bathing suit - without having a "foreign" object inserted into her body. For those of us who are older and/or have saggy breasts, doing reconstructive surgery on the affected breast usually also involves surgery on the "healthy" breast, so the two will "match". And they will only "match" until the non-implanted breast starts to sag with age.

Again, I'm not trying to push my choice on anyone else, but if you would like to have more information about some of the "cons" of reconstructive surgery, and some intimate "pros" of not having it - (actual stories from other survivors I've met, not just my opinions) - feel free to PM me with any questions or comments.

Terrific post! I couldn't have said it better. Those of you interested in this topic may also PM me. It has been 21 years since I had implant reconstructive surgery.

 

[Tiger Fan]

That's a good article, I was glad to hear that. I was on femara (similar to tamoxifen), but went off after several recurrences. As for reconstruction, my surgeon would not let me go ahead with it right away. After my mastectomy he said we would wait 6 months and then discuss it. I did wear my prothesis some, but I've eventually stopped. I had the other breast removed last summer and now I have no ****s and I wear no prothesis ! I was just joking this morning how funny I must look right now with no ****s and no hair ! I honestly do not regret not having reconstruction done. I do have trouble with bathing suits as the ones that are in my size all have a built in bra and it's just a ton of extra fabric that bags down when it gets wet . The people I know who have had reconstruction are only mildly pleased. Most don't even have much feeling and only did it for the cosmetic aspect. I know that many women talk about how without breasts they just don't feel complete or like a real woman and I respect that. For me, I'm just simply more than the sum of my ****s!
Lisa
Tiger Fan

 

[JoannaOhio]

Don't worry, I don't intend to betray anyone's privacy if you send me a private message. I do wish the rest of you could read the PMs I've received - from women who are being told by their doctors that they should have reconstructive surgery, (for a variety of reasons, none of which made any sense to me) - and from women who have had reconstructive surgery and developed a wide range of problems. Again, I encourage anyone who is considering this to do their research thoroughly. I'm not saying that there aren't any "pros" to reconstruction, but I feel that they are mostly cosmetic personal esteem issues. I can definitely tell you of many "cons", most of which are medical, physical concerns - but some are from women who didn't achieve the cosmetic personal esteem results that they thought they would.

Above all, be optimistic and well informed. Breast cancer is not necessarily a death sentence. More and more women are being diagnosed - but more and more of those cancers are being found in the early stages. Do your monthly self exams! Nobody knows your breasts better than you do. Pay attention to any changes! Mine didn't feel like a "lump" when I first noticed it. I described it as a "thickening" that I didn't remember feeling before. It wasn't until after my diagnosis and mastectomy that I first read of "thickening" being a symptom. Don't think you're being silly or over anxious. Report any changes to your doctor, and don't allow yourself to be brushed off if the "difference" you feel doesn't show up in a mammogram or the doctor's physical exam. The majority of all breast cancers are found by the women themselves - often before they are large enough to show up in exams.

 

[Cruise04]

laurabelle - no, I have not yet had BC but because of my family history and my having BC my gyn suggested it - my mother having breast cancer and colon polyps; my maternal grandmother possibly having ovarian cancer and breast cancer but an autopsy was never done and she had horrible docs but we are pretty sure she had some cancer in her when she died; my maternal grandfather dying of colon and lung cancer; my mom's cousin having breast cancer; my paternal family members (grandmother, father, 3 aunts and 1 uncle have all had colon polyps with a scare with my grandmother and 1 aunt close to them being malignant but they weren't); paternal family members - my dad's 3 first cousins - having bone cancer; my paternal aunt having lung cancer - is the reason she brought up the idea. Yes, it has sucked to be a member of my family.

Lisa - hugs to your sister and that scare. I had a similar incident - the week after my mom was diagnosed with BC I went in for my first mammogram. I got a call the day after saying I needed to come back because they saw something and they wanted to do more films. The something ended up being my nippled that had inverted during the mammogram. I remember the phone falling out of my hands and I was in absolute tears - and I was at work!!!!! I was so numb and then I was so angry because the worse words you have heard about a family member you are so sure you are now going to hear about yourself is NOT something you ever want within a week of each other. God I can still remember that as if it happened yesterday and it's been 8 years this month!!!!! I still shake when I think about it.

 

[MerryPoppins]

Hope no one thought I was saying you shouldn't have reconstruction. It's a very personal thing. I was just relating my experience. I wish I'd thought about reconstruction first rather than jumping into it. I'm very happy with just one breast. I don't even think about it.

Good article. The meds sure have come a long way. One of these days they're gonna lick this monster.

 

[laurabelle]

Cruise04 - I hope you do look around on my friend's site. There are others there who have alot of cancer in their families too. For bc, there are only 2 gene mutations they've identified, there certainly are more that they haven't figured out yet, but it's a start. A counselor could help you sort through it. I would think just having someone to talk to about it would be really helpful, whether you decide not to be tested or not.

Linda - That's very encouraging news!

Joanna- That's so true about doing SBE! Almost every woman I know who was dxed under age 40 found their own tumor, or in my case, my gyn found it during my yearly exam.

 

[JoannaOhio]

Boy, threads sure get buried fast on this board. (Lots of new threads quickly push others many pages back - and with the search feature disabled today, it took me quite awhile to find this one again.)

Anyway, I just wanted to say that I'm still open to receiving personal messages from anyone seeking more information, or just wanting to share their stories with me. It has been several years since I've been actively talking about these issues, and I have really enjoyed the PMs I've received so far.

Joanna