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 Post subject: Breast cancer support thread
PostPosted: Wed Apr 03, 2013 1:52 am 
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So, inspired by the way Sarah Kramer is dealing with her breast cancer I thought I'd open a breast cancer support thread for commiserating, sharing stories, asking questions etc.
Breast cancer isn't exactly rare so I figured that several PPKers have to deal with this either directly or because someone in their family has it.

I guess I should share my story to begin with.

In the beginning of last year my boyfriend asked me about a largish lump in my breast. I was all "Oh, I have those all the time, they come and go! No worries!" (which is true). I was just about to go for Japan for a couple of months and was busy with preparations so I didn't bother to get a check up.
When I came back in April I did go though, because the lump had gotten bigger. My gynecologist did not like what she saw in the ultrasound and sent me to the radiologist's to get a mammogram and high resolution ultrasound. Well, the radiologists did not like what they saw either so I had a biopsy which revealed that I have breast cancer.

Few weeks before my 32nd birthday.

I can tell you, it was quite a blow.

During all of that diagnosis process I was SO sure that it would end up being harmless since it is pretty common for young women to have thick breasts with cysts and fibroadenoma. I was so much more probable to have something benign, but alas, I won the lottery of cancer.

And after that my life was all different all of a sudden.

What followed was the operation (I could keep my breast but it is significantly smaller now), chemo (6xTAC), radiation and now I am on anti-hormonal therapy for the next 5 years which is sending me into menopause. God, the heat waves. Not to mention the crazy mood swings which are driving me and my poor boyfriend insane.
And to make matters worse a genetic test showed that I have genetic breast cancer so I'll have to deal with mastectomy and ovarectomy sooner or later. (I have extensive family and not a single woman has breast cancer, so that's another unlikely turn of events. I really did not expect that.)

I am very determined to stay healthy from now on (and chances are good I will) so now it is one step after the other.

The hair is slowly coming back and I am slowly picking up my old life.

Phew, normally I don't post much and am more of a lurker, so coming out with this story is kind of a big deal. Please share, too.


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 Post subject: Re: Breast cancer support thread
PostPosted: Wed Apr 03, 2013 6:22 am 
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I have not had breast cancer but want to thank you for sharing your story. (I had spreading melanoma almost ten years ago and I too feel like I won the lottery.)
I am so glad that your outcome was good. Hang in there.

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 Post subject: Re: Breast cancer support thread
PostPosted: Wed Apr 03, 2013 6:52 am 
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eeep. I'd often wondered about starting a cancer support thread, so this is good! (...are other cancers welcome here?!)

apparently I have significantly increased risk of breast cancer myself, so despite having the world's boniest chest, I have to religiously give my boobs a squeeze once a month to keep on top of things.

my aunty had a mastectomy during her treatment and later got to have it all fixed up. she was boasting to everyone that they were giving her a boob job and a tummy-tuck (where the newboob tissue came from) all at once. screw Hollywood, just get breast cancer, duh!

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 1:20 am 
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torque wrote:
I have not had breast cancer but want to thank you for sharing your story. (I had spreading melanoma almost ten years ago and I too feel like I won the lottery.)
I am so glad that your outcome was good. Hang in there.


Thanks! Also glad to hear that you recovered fully!

joshua wrote:
eeep. I'd often wondered about starting a cancer support thread, so this is good! (...are other cancers welcome here?!)


Oh, yes, of course any type of cancer is welcome! Everybody who has to deal with this should have as much support as possible.

At least if your boobs are small you'll be able to feel any changes easily. Usually breast cancer does not grow all that quickly so if there ever should be something you'll find it easily. My surgeon said that the tumor I had removed has started growing around 6 years before I found it.

Gah, when I have my mastectomy I want them to be replaced with silicone and then I'll get bigger boobs. I have A now but would like a B so it will be easier to find pretty dresses and underwear. Trying to find positive aspects where I can.

Also, I was really annoyed about the whole talk how many women feel like they have lost their womanhood because of the operation. I didn't feel this way for a second because my boobs really do not define me; same for the long hair. It may have helped though that my guy was and is all sorts of wonderful and supportive and has no issues at all with my crippled breast.
What matters is being alive anyway.


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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 2:36 am 
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Wow, you're awesome! Thank you for sharing your story. Sending you many good thoughts. Your partner sounds so supportive and kind and your attitude is amazing.

My mother had breast cancer.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 3:37 am 
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Lily wrote:
Also, I was really annoyed about the whole talk how many women feel like they have lost their womanhood because of the operation. I didn't feel this way for a second because my boobs really do not define me; same for the long hair. It may have helped though that my guy was and is all sorts of wonderful and supportive and has no issues at all with my crippled breast.
What matters is being alive anyway.

it's pretty hard being on the provision of services around this, so I think they aim super sensitive/conservative saying that 'it's okay to feel sad about X' so that if you're not sad, you feel even better. but if you ARE sad, you don't feel alone/alienated/etc. and I know some folks that were terrified of losing things (be it hair, a boob, a leg) at first, but after not too long they forking owned that shiitake in such positive ways!

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 3:38 am 
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I mean, even discussing 'cancer' in some company is pretty tense and awkward.. let alone saying that YOU have it, and there WILL be changes. until that changes, medical professionals will try to be as oversensitive as possible (which is better than the alternative :P)

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 3:58 am 
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Yes, of course you have a point there and I'm pretty sure that is the reason for the whole tiptoeing and super carefulness around the topic.

I guess everybody reacts differently to such an extreme situation so maybe it was just me that I could not identify with those concerns at all. Like, I had real problems being scared of death and all that. I am fine with every side effect and body change as long as I live.

I have to admit though that my perspective on cancer has changed dramatically since finding out that I have it. Before it was this horrible nightmare as in 'I just hope I'll never, ever have cancer when I grow old. It is the worst!' and now it has turned into something one can actually deal with and leave it behind.
Certainly I would have been very uncomfortable to talk about it before BC, because it IS scary and who wants to deal with it if they don't have to?


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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 4:05 am 
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Tofulish wrote:
Wow, you're awesome! Thank you for sharing your story. Sending you many good thoughts. Your partner sounds so supportive and kind and your attitude is amazing.

My mother had breast cancer.


Aw, thanks! Yes, he IS the best and I feel incredibly lucky to have found him. (And thank you, but really I don't feel very brave or strong or anything. Just normal me and stuff.)

I sounds like your mother's story did not end happily? I really hope that it did, though!


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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 5:37 pm 
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Lily wrote:

on anti-hormonal therapy for the next 5 years which is sending me into menopause. God, the heat waves. Not to mention the crazy mood swings which are driving me and my poor boyfriend insane.


Tamoxifen? I am on year three of five and have been dealing with ovarian cysts and now a uterine situation that will require surgery. Other than that, being three years out, I feel great and lucky and in many ways my life is better since my diagnosis, which may sound weird, but I do feel like I have a greater appreciation of life and loved ones.

Congratulations on your survivorhood, Lily! And Joshua xoxo


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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 5:45 pm 
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My mom just finished her 4th year of tamoxifen. She was really lucky as far as breast cancer goes because they found it super early and she was able to have a lumpectomy and no chemo or radiation. Our family has a history of fibro adenomas. I had a mammogram and ultrasound forthe first time when I was 25 and I've had more ultrasounds every few years and a biopsy last year. Everything has always been clear, but I try really hard not to get complacent. I'm 32, too, and I'm prob due for another check up.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 04, 2013 7:10 pm 
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Great to see this thread.

I lost my mom after her time with breast cancer in 2005 at age 49. She was diagnosed in 1999 when I was a senior in high school.
It's really nice to see this not being the case so often anymore.

Please, check your breasts.

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 Post subject: Re: Breast cancer support thread
PostPosted: Sat Apr 06, 2013 1:03 am 
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~Sz wrote:
Tamoxifen? I am on year three of five and have been dealing with ovarian cysts and now a uterine situation that will require surgery. Other than that, being three years out, I feel great and lucky and in many ways my life is better since my diagnosis, which may sound weird, but I do feel like I have a greater appreciation of life and loved ones.

Congratulations on your survivorhood, Lily! And Joshua xoxo


Yes, Tamoxifen and also GNRH-Analogues just to be sure. I'm happy to hear that you have come out of this so well! Wishing you all the best for the future!d

And I agree even though it may sound cheesy, I am now also appreciating the good things in myl life more and find it also easier to see what is important and what isn't.


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 Post subject: Re: Breast cancer support thread
PostPosted: Sat Apr 06, 2013 1:15 am 
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jdfunks wrote:
Great to see this thread.

I lost my mom after her time with breast cancer in 2005 at age 49. She was diagnosed in 1999 when I was a senior in high school.
It's really nice to see this not being the case so often anymore.

Please, check your breasts.


I'm sorry to hear about your loss, that must have been horrible!

And I agree wholeheartedly on getting checked.


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 Post subject: Re: Breast cancer support thread
PostPosted: Sat Apr 06, 2013 5:58 pm 
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Lily wrote:
Yes, Tamoxifen and also GNRH-Analogues just to be sure. I'm happy to hear that you have come out of this so well!


What are GNRH-Analogues?

I'm struggling a bit with hot flashes right now, but I recently broke my leg and then had it surgically repaired and the overall trauma threw my thryroid out of whack (I think. I am also Hashi's) and so I am just getting through all this looking forward to going back to my cliched "new normal." (As opposed to this new new crutch-dependent normal!)

I face every day with positivity and overall I do feel great and happy and very, very, very lucky. I had a low onco-type score which put chemo off the table for me and since I had a mastectomy (instead of lumpectomy; I had the choice) I did not have to do radiation either, which I for some reason am quite afraid of. I had a tram flap reconstruction, which felt like I was completely filleted, and that was sort of tough getting through, it was a long surgery, but I was ironically very healthy when I was dx'ed, so again, I was very lucky and got through the surgeries well. I'm super happy with the results. (There are additional gory details I am happy to share, here or via IM.)

I am BRCA-negative. I don't have children but I wanted to get tested for the benefit of cousins since an aunt did die of BC 15 years ago. Otherwise I am ER+ PR+ and I was stage 2. IDC and in-situ.

The whole thing reading through Sarah Kramer's blog hit home; my initial surgery was three years ago to the day, today; so she and I went through our experiences at the same time, three years apart. And it looks like it was similar timing for you. All the feelings came rushing back as she describes preparing for surgery, getting things in order, buying stuff for the hospital and all of that. As I'm sure it did for you. Like you, I felt the lump myself. Like Sarah, it hurt! But, I am always pulling muscles so I didn't think too much of the pain, until I felt the lump.

Coming up soon, another ultrasound; I may need to have an ovary removed. I feel you on that, you are younger than I am although I was pre-menopausal when diagnosed. Removing them will give you peace of mind, though. Have you already had the CA-125 test? Mine was elevated and then normalized, and there are a lot of issues with the test, but certainly it will be covered for you and it's easy, just a blood test, so it may provide a good bench mark with regard to ovarian functions.

Please don't hesitate to contact me here or via IM with any questions or concerns about anything I might be able to help with. I feel like I've been to Cancer College since I like to research everything, but it can bring one's mood down, so I don't really recommend that approach. Two years before I was dx'ed a friend of mine was dx'ed and I helped her through it, so I already had a pre-requisite course.

And, of course, I was already vegan when I came down with it, so that was a source of annoyance for me, but I know being vegan since, and now, greatly helps reduce my risk for recurrence and it probably the single most important thing I can do for myself. And the animals and the planet!

Quote:
And I agree even though it may sound cheesy, I am now also appreciating the good things in myl life more and find it also easier to see what is important and what isn't.


Yes! It's like, all those stupid little annoying things? Not a problem! It's easier to be happy now. Every day is an adventure.


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 Post subject: Re: Breast cancer support thread
PostPosted: Sat Apr 06, 2013 6:05 pm 
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PS: I've recently started doing some Buddhist meditation and going to a local sangha, and that really, really, really helps keep me centered.


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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 07, 2013 4:28 am 
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Thank you for sharing!

GNRH-Analogues (http://en.wikipedia.org/wiki/Gonadotropin-releasing_hormone_analogue) cause the ovaries to basically stop functionning. this way the estrogen levels in my body are reduced even further even though the Tamoxifen does the main job of blocking it from the receptors (my BC is extremely hormone-sensitive, fortunately). GNRH Analogues are not very effective compared to Tamoxifen but they may add a few percent to my probabilty of not having the BC come back. I was only advised to use them because of my young age; the younger, the more likely the cancer is to come back, as you surely have heard and read yourself.

Cancer college indeed! I also now know more that I ever would have imagined about cancer and the different aspects of therapy. For me it was very important to know as much as possible during the whole process so I felt able to actually make decisions on my own instead of having doctors tell me what to do.

I could not avoid radiation because it was already in my lymph nodes and chemo was indicated -again- because of my age. And it did feel right to me to get out all the big guns and shoot that forking cancer with all there is, haha.
Chemo was not very nice but not too bad either. Much less worse than I would have imagined. And radiation was actually a total piece of cake after chemo. I was only extremely tired during the last few weeks.

Still, I'm glad to hear that you could avoid both! As you I was absolutely healthy before diagnosis which I think played a huge part in being able to physically deal with the stress of chemo and radiation pretty well. I think I recovered really quickly and I am very thankful for that.

It sounds awful about your reconstruction being so much trouble. If you don't mind sharing more details here (and if the mods don't mind) please do. There may be some members of the forum who just lurk and read would also like to know.
Uh, not looking forward to doing the mastectomy thing in the next few years. I have the BRCA2 mutation and now my parents were tested as well; we'll find out about the results on Friday and I am anxious as hell.
Oh, and my first ultrasound of the lady parts coming up on Thursday; I am slowly picking up on the check-up-routine.

And I don't know about the CA 125 test, I'll have to ask google about it....


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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 3:14 am 
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Update: Now it is official that I inherited the BRCA2 mutation from my father. Ugh. It means that possibly a very extensive family (I'm talking about dozens of cousins here, most of which already have children of their own) might have to deal with this issue. Well, first my father's siblings are next and I only hope that not many of them have the mutation.

To make matters worse, my father crashed into my boyfriend's car on the way to the hospital on friday where we ere supposed to learn about the test results. My father's car is totalled, my bf's very severely damaged. And it happened in a city hundreds of kilometers from where any of us live. This was one of the most catastrophic days of my life, seriously. Life can be such a bisque sometimes and I am so much in need of a break from the bad news piling up on one another. Uuuuugh.


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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 3:16 am 
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I am so very sorry. Sending many good thoughts to you and your family.

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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 5:39 am 
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hang in there lily. i'm glad nobody was hurt in the accident... i hope it gets a little less painful one moment at a time. thinking of you.

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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 6:08 am 
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Oh Lily, that is a horrible day.

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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 4:49 pm 
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I'm sorry. I'm too freaked out to properly read everyone's story now. Can anyone help me not freak out. There are lots of not so awful things that could show up in bone as "inconclusive" in an MRI after breast cancer, right?

This is so scary. And appointments are very slow and hard to get. She is going to be waiting a while for a bone scan. Everything all along has taken ages for her. Lovely Ire health care system.

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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 4:51 pm 
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Lily, I am so sorry to hear about the brca results. This is awful and it sucks.

There are preventative (non surgical) protocols in place, such as taking tamoxifen in advance of diagnosis and there's another similar drug (Raloxifene) being routinely prescribed in a preventative manner that your family members can look into. Also, this gives everyone a heads up about being vigilant about mammos and their ovaries, which are otherwise pretty easy to ignore. Here's a link about the CA 125 test: http://www.mayoclinic.com/health/ca-125-test/MY00590 -- it gives a pretty good rundown about why it is a flawed indicator, but better than nothing.

I'm truly sorry you are going through all of this. (((hug)))

PS: I will type out my whole story.

PPS: I found that going to a support group was super helpful for me. I still meet up with some of my gals. Back when my group met on Mondays, after most of my treatments and appointments were done, I made the decision that on Mondays I was going to have cancer, which gave me the rest of the week to not have cancer. Of course, when I had appointments and tests, that was another day of the week with cancer, but somehow it helped my head and heart, and still does, to have cancer-free days.


Last edited by ~Sz on Fri Apr 19, 2013 4:56 pm, edited 1 time in total.

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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 4:55 pm 
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Lily: Here's a couple of good links re: preventative tamoxifen
http://www.telegraph.co.uk/health/healt ... -time.html

http://www.uptodate.com/contents/medica ... the-basics

And that was the name of the other drug: Raloxifene


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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 4:57 pm 
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lavawitch wrote:
There are lots of not so awful things that could show up in bone as "inconclusive" in an MRI after breast cancer, right?


YES.

MRIs are useful with regard to cancer but the downside is that they cause a TONNE of stress due to false positives, or, spotlighting things are are not a cause to worry. So, do save your worry for when there is a more conclusive dx.


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