Hi there! First time poster, but I felt like this would be a place where people could learn a little from my experience, as well as ask me some of the questions that friends and folks are maybe too shy to ask in person. I'm happy to answer just about anything you might be curious about. I'm also looking forward (hopefully) to questions that might make me think about all this in new ways, because every perspective is a good one.

I was diagnosed in April, had a double mastectomy with expanders placed on May 30th, and am a little over halfway done with my chemo. Once the chemo is done I'll have another surgery to place breast implants.

Things that color my perspective: I've always been a very healthy person, never sick, always active, so navigating all the medical stuff and especially having to deal with a compromised immune system has been a bit of a shock. I also had natural 34G breasts before my double mastectomy, which I'm sure had some pretty solid effect on folks' perception of my femininity and attractiveness, so I have some thoughts/feelings on that as well.

One last thing: if we could avoid commenting about how chemo is a scam and I'm just a tool of the medical-industrial complex and if I just took hemp oil or ate better or whatever I'd be cured- that'd be great. Thx.


Comments: 355 • Responses: 65  • Date: 

CMarlowe99 karma

Totally generic, but I honestly want to know. How do you maintain a positive attitude?

I'm fairly certain that I would spiral off into depression and drug abuse very quickly if I were similarly situated.

Bakelitebetty177 karma

Hah. I have no idea how to answer that. It's just who is am, I suppose.

I certainly have my moments, and lord knows I have random emo days because of the chemo (I dropped my keys and cried for 20 minutes one day last week) but mostly i just crack jokes and make smartass remarks and remember how lucky I am to be loved and taken care of by friends and family, and how much next summer's gonna RULE.

thairusso27 karma

and you're lucky to be alive, in general, which is magical in itself

i've heard the alternative isn't that neat

Bakelitebetty18 karma

True dat.

[deleted]5 karma


Bakelitebetty7 karma

I figure being miserable is just going to make me... Miserable, with the added effect of making family and friends miserable, and I sorta need them like a lot, so that's the last thing I want to do!

AbstracTyler21 karma

It almost seems to me that challenges are opportunities to show strength. It's like . . . people talk about being brave like it's glamorous, but it's not. You can only be brave if you're afraid. That's the only time you get to be brave; if you're not afraid, there is no cause for bravery.

I've never had cancer so I can't speak to the challenges of it, but I've had other significant challenges in my life, like so many other people. Those challenges can destroy you, if you let them. It takes strength to struggle through them and come out the other side. Sometimes it just takes a stubborn, sheer force of will. Depressed people might know what I'm talking about. You just gotta be obstinate about staying alive until medication or therapy starts to work.

Anyway, congrats on the mastectomy, OP. I wish you well in your recovery, and hope that you come out the other side of this with some new insight into who you are, and what it means to be alive.

Bakelitebetty13 karma

Thank you. There's lessons already being learned, and I'm grateful for them.

I'm told I'm brave and inspiring. I don't know what those words mean. I'm just working my way through this the only way I see fit, and doing everything I can to take everything away from it that I possibly can because lord knows I only want to do this once.

blablahblah60 karma

One last thing: if we could avoid commenting about how chemo is a scam and I'm just a tool of the medical-industrial complex and if I just took hemp oil or ate better or whatever I'd be cured- that'd be great. Thx.

Do people say those things to you?

Bakelitebetty72 karma

Not many, but then again, it doesn't take many.

CaptJYossarian9 karma

That seems pretty rude to suggest that someone could have done something differently to avoid getting cancer or should have ignored the advice of a medical professionals in how to best treat their cancer. Sometimes people are pretty tactless when it comes to subjects like this. I'm sure most people just want to help.

I am somewhat curious about the marijuana oil thing though. I apologize if I'm out of line here, given what you said, but I am interested in your opinion on marijuana oil. With several doctors in my family, it is something that comes up occasionally and has always interested me personally. Is this something that you have tried/considered or is it not something that you are willing to get involved with? Have you been able to use regular marijuana to treat the side effects, like nausea and lack of appetite? I live in a state where it is legal for both medical and recreational use, so it isn't all that taboo around here really. Most people I know are all for it. I assume you've done some research into the matter since your diagnosis, so I am just curious what your experience has been. Some people endlessly extoll its virtues, some people say it is all nonsense and hype. The conclusion that I came to was that I would give it a shot, along side chemo, if I were ever to be diagnosed with cancer (depending on the type), since the oil is so easy to get or make here in my state. My SO has been paranoid about a lump she has been feeling this week and I'm trying to get her to see a doctor about it, so this post has me even more nervous now.

Anyway, thanks for the AMA. I hope this didn't offend. If so, downvote away. You will be better before you know it!

Bakelitebetty21 karma

I haven't had any digestive side effects, and I don't find that marijuana helps with pain, so I haven't been using it at all. I don't have anything against it, it's just that I wasn't into getting high before all this happened so I'm not inclined to start now unless it has some benefit.

I'm all for using it as a palliative or an appetite aid, though.

tiny1553 karma

Do you have an SO, and if so what has been their reaction? I wish you all the best in your recovery.

Bakelitebetty114 karma

I do, and he's been very supportive, sweet, and caring. He's been with me to two of my four treatments (my mom came to the other two) and has been ready and willing to ferry me to the hospital on short notice a couple of times.

That said, he'll totally call me on it if I'm feeling too sorry for myself :)

tiny1528 karma

Sounds like a really great guy, the two of you are lucky to have each other.

Bakelitebetty34 karma

Thanks. He's aight :)

Ellsbobs12 karma


Bakelitebetty37 karma

Southern California. I don't know if anyone actually says that but me and I usually only do it while I'm hella gnarly texting.

bertfivesix18 karma

Southern California



Does not compute. :)

Bakelitebetty2 karma

Hee hee

El_Dubious_Mung39 karma

Are you gonna go back to the tig ole' biddies, or downgrade a bit? Maybe that's a bit brash, but as a guy, I can't really wrap my head around what it's like to lose boobs. I know, logically, on some personal level it has to be depressing to lose them, but then I try to think what the bright side could be, and now you can have any kind of boobies you want!

Huge boobies, itty bitty boobies, asymmetrical boobies, 3 boobies...sky's the limit with plastic surgery these days. I really mean no offense, but as we march into the 21st century, the human body is slowly becoming whatever the hell we want it to be, and I find that fascinating.

On another note, are you worried you might get that feeling like "these aren't my boobs"? Do you have phantom boob syndrome? Do you miss your boobs?

The closest analogue I could think for men is losing their testicles, but besides some hormones, slap in some neuticles and we're good to go. They aren't really apart of our body image. As long as something is in the bag, it's all good.

TL;DR I guess what I'm asking is, how would you try to translate what you've gone through and what you're going through to booby-lovin' man-speak? And what would you like men to know about the experience?

Bakelitebetty58 karma

I have no idea how to translate to booby-lovin' man-speak! I mean, most boobie-lovin' dudes would probably be pretty sad about the girls going away. For me, it's weird. I thought I'd miss them more, but really I just kind of look.. Normal now. And I feel really good about how I look. (Note: I have temporary implants-expanders-in, so at this point I'm a full C, which is where I'm going to stay). I don't think testicles would be a perfect comparison, because while there's certainly the emotional involvement, testicles aren't as huge a part of how the outside world sees you, which colors your own self-perception more than we'd like to believe. Edit: just re-read your question. Duh. You already addressed this. I'll chalk it up to chemo-brain, which, by the way, is a good excuse for all kinds of stuff.

I am going way, way smaller. Like, "average" size. And it's so goddamn nice to have things fit everywhere. I'm pretty slender, so.. Yeah. It'll sure as hell make running easier.

No phantom boob syndrome, but I have had phantom nipples where I felt them get hard in a cold grocery store before I realized they aren't there anymore. I wonder what phantom testicles would feel like? Are guys aware of them squeezing up against your body when it gets cold?

TryAnotherUsername138 karma

Why can’t they preserve the nipples? And C is still pretty big, why not smaller? Better for running, lying on the stomach and so on (I’ve been told, I’m male :D ).

Bakelitebetty3 karma

You guys, it's actually a valid question.

When I started all this my thought was that I needed to have at least something because I was so used to having huge ta's that going flat would be a shock to the system. Now that I'm at a a C, I realize in hindsight that I could have gone smaller and still been happy about it.

Part of the problem with that though is that because I started out so big, they had to remove basically my whole chest, not just an area here and an area there. So the top part of my chest is kinda hollow-looking now. They're going to fill that in with some fat from... I dunno where, my tummy? But if I'd gone with itty bitty titties or no reconstruction at all it would have been more of an issue to fill in all that space, if that makes sense (I need more coffee)

youshouldgotoadoctor1 karma

They can preserve the skin and nipples, it just depends on what kind of mastectomy she got. Some take away more structures than others.

Bakelitebetty2 karma

In my case the cancer was right behind the nipple on the right, and on the left they told me that due to my very large size they'd have to remove so much tissue/skin/etc that the blood supply to the nipple would be all but impossible to preserve. So basically if they tried to save the nipple there was a very high chance that it would die and they'd have to remove it anyway. No fucking way was I gonna have a necrotic nipple stuck to me shudder

El_Dubious_Mung4 karma

It's good that you're positive about it! From the sound of it, you had some pretty bodacious boobies, and I'm pretty damn sure every guy you know mourned them. However, now you get your choice of boobies, and no more back problems to boot!

And yes, dudes do feel it when the boys get cold.

QUICK FOLLOW UP QUESTION: I've had surgeries before, and the weirdest part is a sort of numb-feeling on the inside, in the meaty parts. Like, normally you don't feel your insides, but when they chopped into, and are healing, the absence of feeling is noticeable. Do you get that with the expanders? Like the insides of your boobs have no feeling (which of course would be the case, but just the fact that you notice it)?

Bakelitebetty17 karma

I think it felt that way a little at first, but it's changed a lot during the healing process/as they pumped up the expanders.

Actually, the whole front of my boobs is numb, as well as some area under my arms due to nerves being severed due to surgery (they took out a lymph node on each side too). I actually feel all sorts of weird stuff in there now that the nerves are waking up again, including a MADDENING itch that's INSIDE the skin in one of the numb parts. It feels like the expanders are rubbing around on the inside of my skin. Not super-pleasant, but I'm told when they're switched out for the soft saline implants it's instant relief.

justforpornobviously30 karma

I've got a few questions. First, do you realize you look like a badass with no hair? I mean seriously, I usually think of bald women as highly unattractive, but damn you can pull it off. Second, how's the chemo going? My grandad went through years of chemo, and it helped him for a while, but made him exceptionally tired. Third, I personally come from a family who has had more than one run in with cancer, and we now view it as just another ailment, and no big deal, does your family, or your close friends just treat it like that, or do they make a big deal out of it and treat you different now? And finally, how are you doing? You look happy in your picture, and I hope that's the case, so I figured I'd just throw it in there incase you needed to vent.

Bakelitebetty31 karma

1) thanks. I have good cheekbones or something :)

2) it's ok. The fatigue is really putting a dent in life in general. The week after a treatment (I have them every 3 weeks) I'm pretty much useless. This past one I had friends sign up to bring me meals because I just get so wrecked. The rest of the time I'm just limited, I can only do 1/4-1/2 of what I'd normally do in a day before I am just done. I have bone pain from the shots I give myself to keep my immune system up, and my expanders hurt all the time, but I haven't been sick or anything. It's doable, but I can't wait for it to be done.

3) nobody's really made a big deal out if it, only real difference is that people don't call me to go see bands or hang out at the bar or hike Mt. Whitney, which is totally fine. For now.

4) pretty good for the most part :)

justforpornobviously3 karma

Well that all sounds pretty good then! Keep it up, and best of luck to you!

Bakelitebetty4 karma

Thank you!

womanhealthyself25 karma

Hello and thanks for this ama- my question is how were you first diagnosed?

Bakelitebetty54 karma

I found a lump in my breast when I was lying around idly feeling myself up. It was actually quite large, but I couldn't feel it when I stood up no matter how I moved my arm around because of where it was situated. After that it was mammogram/ultrasound/biopsy pretty much immediately.

Champion_of_Charms31 karma

How old were you when you found it? I hope asking that isn't rude. You just look young in the photo.

Bakelitebetty52 karma

42, same as now.

Idunpunchedup17 karma

I did that too when I was 17, i was feeling myself up. Then I felt this huge golf ball sized mass. And I told my mom and she told me I was probably overreacting. I had to harass her for like 3 days before she would check it herself. (She's a nurse) and then she took me to the doctor while crying uncontrollably. Mammogram, ultrasound, surgery. I was lucky though. Mine was just an adenoma. Good luck! :)

beautyof19903 karma

I have a nod in one of my breast. Cant remember which, and too lazily to find out. Anyways I came upon it not too long ago. It appears to not have changed in size the several times I've checked it in the past. To me it feels almost like a marble. I've read up on it and a possibility is an adenoma, worst case cancer. Which it never has popped into my head that the worst case scenario would happen. I still haven't gotten it examined. What did the doctors tell you about the adenoma? I read it is common for young girls to have.

Idunpunchedup4 karma

Adenoma's are fibrous masses, if it moves odds are it's an adenoma. If it hurts it's a cyst. Adenoma's have a weird shape to them most of the time, and although they don't medically need to be taken out they should. They can and eventually will get bigger and deform your breast. It's not a painful surgery, just a lot of bruising. If not on health insurance it costs about 7-9,000 dollars. But if you live in the us and are under the age of 18, I'd recommend applying for Medicare. They will cover it fully. And its super awesome and stress relieving. They also can come back. So make sure to get yourself checked regularly. I think my doctor said that it increases your risk for breast cancer because your cells are clumped...? I don't remember though. It was about 4 years ago.

beautyof19902 karma

Thanks that was very informative. Actually the nod doesn't move. So now I'm more freaked out. Should probably see someone but I'm not good at taking care of myself and following up with appointments. I was without insurance for two years so that could be a factor too. I am 24 and live in the US. I am on my mom's insurance.

Bakelitebetty3 karma

Jebus. Just go have it looked at already.

mililani7 karma


Bakelitebetty15 karma

Is it weird that I can't remember right now off the top of my head? We'll call it chemo-brain. It was largish but not super-remarkable. My paperwork is right across the room but I'll be damned if I'm going all the way over there. I'm sure it'll pop into my head in a minute.

bloodorangeicecream3 karma

Did you have a mammogram previously, like at age 40? I know they can miss lumps, just wondering if that was the case for you?

Bakelitebetty3 karma

No. I had literally the day I found the lump been talking to a friend about how I needed to get one, especially because I wasn't confident I'd be able to feel a lump in my huge fibrous breasts. That afternoon BAM!

The rest, as they say, is history.

mpd8117 karma

Has anyone in your medical care team done something that really stood out to you, either positively or negatively?

Bakelitebetty24 karma

Hm. I adore my reconstructive surgeon just in general, but other than that, everyone's been really great, communicative, and helpful in general, minus a certain cranky ER nurse.

The folks in the Chemo infusion center are really amazing, they know what they're doing, they're continuously upbeat, and they make you feel like family.

RecoveryEmails17 karma

What's your favorite color? What is your favorite bird? Who's the best Enterprise captain?

Bakelitebetty47 karma

I hate pink.

A booby. Duh.

I'm a vintage gal, so Kirk all the way.

RecoveryEmails14 karma

Favorite color! Kirk is classic but Picard steals the show for me. Are you are dog person, cat person or what?

Bakelitebetty35 karma


Cats are good for snugglin' but you can't take 'em to the beach or on a ten mile hike. And the last time I tried to have my cat catch a frisbee the results were... less than optimal. So, both.

volcano_stick_face17 karma

I am a 21 yr old having surgery in a year to remove both breasts as a precautionary measure. I am wondering if you are going to get fake nipples made after size all sorted? Or are you just going to stick with how they are? I was considering getting little rose tattoos in the place of nipple.

Bakelitebetty20 karma

Good question! I'm likely going to get nipple tattoos, but I'm not certain if I'm going to go natural or do something different. I thought it might be fun to have natural nipples tattooed on in the shape of little hearts or something. Either way I'll be going to a professional tattoo artist with demonstrable experience with exactly the type of tattoo I want done, NOT having it done by a plastic surgeon. I've seen a few of those in person and while they're ok from a distance, that's nowhere near good enough for me.

I don't think I'm going to have them do that thing where they nip and tuck and make a little nipple thing that sticks out though.

Bakelitebetty14 karma

Can I ask what your decision is based on? Even after all this and with my family history, I don't think I'd choose to have my breasts removed if there was no cancer present. Have you had the genetic testing?

volcano_stick_face31 karma

I have the BRCA gene with my mother having agressive breast cancer at 39 and an aunty dying of breast cancer at 29. My cousin that is 26 years old has just recently been diagnosed with a low grade breast cancer. I decided to get surgery to stop the constant worry about if a lump is present and to reduce the amount of scans needed every six months.

Bakelitebetty20 karma

Yikes. Makes sense to me.

I'm still waiting for my test results, there's a possibility that they may want to remove my ovaries. There's other ways to deal with the increased risk of ovarian cancer, of course, but I'm not concerned about fertility at this point and the tamoxifen I'll be taking for the next 5 years once I'm done with chemo is already gonna knock me into early menopause, so why not? They can do it laparoscopically, so that's a big plus.

volcano_stick_face8 karma

Yes that is the problem with the increased risk of breast cancer. They won't remove my ovaries until between 35 and 40. I wish you all the luck and it is refreshing to see someone with such a positive attitude.

Bakelitebetty5 karma

I'm glad you have the opportunity to make these choices before they're made for you. Good luck yourself!

SandyZoop2 karma

My partner went through it at 35 and just had her oophorectomy at 38. It actually helped her as the chemo put her into menopause. BRCA-1 is no fun, though.

Have you experienced taste changes? We ended up rejecting offers of food because what would taste good to her was unpredictable.

Bakelitebetty5 karma

Yeah, but only fruit tastes weird, and only for the first week/week and a half after treatment. This time tomatoes weren't tasting great either, but generally veggies/savory/protein/dairy have been ok, so it's not too much to navigate around. I miss my daily smoothies though.

gingerhaole13 karma

First of all, I'm so glad that you're in treatment and feeling well, and it sounds like things are looking really positive for you! I'm sorry that this is something you have to go through, but glad that you have the options.

My mother is in treatment now for her fourth(!) bout of breast cancer. She had a double mastectomy ten years ago, but the damn thing just won't leave her alone. It's Stage 4, but she's doing really, shockingly well. Considering she's already gotten a second, third and fourth chance in life, she's been feeling pretty good about the whole thing.

I'm in the process of getting gene tested, but I've made up my mind that whether or not I have the BRAC 1 & 2 genes, as my mom does, I'm going to have my breasts removed as soon as possible. It's something that scares me horribly, but a decision I'm pretty firmly attached to. I have plenty of fears about it all. Will the replacements be painful or super awkward? Will I be able to keep my own nipples? Will my body reject reconstruction? Will my husband feel the same way about me? If I DON'T have the gene mutation and chicken out, will I live in fear my whole life?

I'm 31, 6 months pregnant, and I know all my priorities will drastically change pretty soon here. Hopefully it won't matter so much whether or not I have the breasts I was used to, or any at all. But right now, I'm scared, and I think about it a lot, so it's nice to see you do this AMA, nice to be reassured of some things, nice to see that you can be so positive and strong in the face of not just the mastectomies but the much bigger scare of cancer.

I forget that so many women still die of cancer. In my family, it doesn't kill you, it just inconveniences you, then you kick its ass and get back up. I know you'll be that way. You already are.

Bakelitebetty6 karma

Thank you. I'm glad you find this useful :)

MrTDH12 karma

Bless your heart, I hope you recover 100% :) What does chemo feel like ?...Besides tiring.

Bakelitebetty23 karma

Well, while I'm getting the infusions, ideally it doesn't feel like anything. During round 2 I had a reaction to the Taxotere (I get three drugs each time intravenously, Taxotere being the second out of the three) where I felt as though I was having a hot flash, then my vision went almost completely white, then I wasn't sure if I was going to throw up or pass out. In the end I did neither. They stopped the drip and gave me a bag of antihistamines, then started the drip again slower. Now they stick a bag of antihistamines into me before they start that drug and I haven't had a reaction since.

As for how it feels just in general... Everyone is so different. For me, the fatigue has been the biggest problem. "Tired" isn't the tight word for it. It goes to your bones, and it's debilitating. My immune system is shot to hell, so I have to give myself shots to stimulate my bone marrow to produce more white & red blood cells, so my bones hurt all the time too. Between that and the discomfort from my tissue expanders rubbing around behind my pectoral muscles, there's days when I have to percoset every 5-6 hours or I can't do anything. I'm also anemic, which doesn't help with the fatigue.

But lots of people have it a lot worse. Chemo kills fast-moving cells, which means hair, skin, and mucous membranes. The same mucous membranes that line your entire digestive system. Some people have real problems with that-so far I haven't (knock on wood).

Thanks for the good wishes :)

MrTDH2 karma

Oh my God....you just gave me an epiphany of how small my struggles and obstacles really are. Bless your heart, I hope you kick cancers ass and become healthy again. :))

Thank you so much for the AMA. really.

Bakelitebetty2 karma

I get that sense about my own struggles and obstacles when I read other people's stories of how much worse they're faring with the chemo or how they have to go through this without support from friends and family.. It's all a matter of perspective.

Thank you, and you're welcome. I'm glad I was able to provide something for you by doing this ;)

catsarebetterthanppl10 karma

First, I'd like to wish you a fast and healthy healing process!

My question is: Hows the nausea? I am Emetophobic, so the thought of vomiting is horrifying. I always associate Cancer with vomiting, to me that is the scariest part. Do you get nauseous a lot now that you go through chemo? Were were slightly Emetophobic as well? I've realised a lot of people are but they don't actually tell others lol.

Bakelitebetty3 karma

Haven't had any. None, zip, zilch. No digestive problems whatsoever except a touch of constipation (TMI?) from painkillers.

_LMiller6 karma

Will you buy new tits when this is all said and done?

Bakelitebetty16 karma

I'm already undergoing the reconstruction process.

Throwawayqw1231 karma

I'm curious to know the reconstruction process myself. All silicone all the time, or are they using new technology to regrow your own cells so no chance of rejection, etc.

Bakelitebetty10 karma

There's several ways to do it. In my case, they inserted a pair of tissue expanders underneath the pectoral muscle at the same time as they were doing the mastectomy. This stretches out the skin and the muscle to make room for implants. Over time, these were inflated with saline via a needle until they got to the size I wanted them, and now they're just hanging out until I finish chemo and get them switched out for more permanent saline implants. I guess they're going to take some fat from wherever they can find it and use it to fill in the hollowish area higher on my chest so it all looks nice and natural.

nickyardo5 karma

May I ask what stage your cancer is? My brother and his wife both had cancer within the past 2 years, had chemo but neither were very advanced

Bakelitebetty6 karma

I was stage I, positive for progesterone and estrogen receptors, and HER2+

crackalack2 karma

You mentioned you're undergoing chemotherapy. Does your regimen include tamoxifen and herceptin, and if not, were those drugs tried before you started chemo?

Bakelitebetty7 karma

I'm on the TCH regimen (carboplatin, Taxotere, and Herceptin) for two more treatments and then I will be doing Herceptin for the remainder of a year, and I'll be starting tamoxifen once I'm through with the cocktail treatments and will be taking it for 5 years.

shiftbackslash4 karma

You have a nice lady face. I think it is the chin. You have a very feminine jaw line.

What are your tattoos of? Also, are compression garments used to help with scar formation for a procedure like a mastectomy?

How different does clothing feel?

…You have spots on your head. Are they coolness spots?

Are you going to dress up for Halloween?

Bakelitebetty9 karma

Thanks. :)

I have morning glories on one arm and a giant Capricorn on the other.

Oh. My. God. I love the way everything fits now. It doesn't give me any discomfort, if that's what your asking. all the weirdness right now is nerve pain on the inside.

Hahaha on the spots. I told someone the were speed holes the other day. They're actually moles, I was shocked to see how many I have on my head!

If I do, it'll be as a circus strong man. My last treatment is October 28 so I don't know if I'll be up to doing anything, but if I am it'll just be handing out candy on my best friend's porch and I'll be tired so I don't want to do anything too elaborate. I just posted on Facebook asking for bald chick costume ideas and there were some pretty brilliant ones!

shiftbackslash2 karma

Dexter's Action Ego from Dexter's Laboratory. You already have black frame glasses and a black tank top, so you are already part way there.

Hitman: Agent 47

Gru from Despicable Me


Statler or Waldorf from the Muppets

Bene Gesserit from Dune

Ellen Ripley from Alien- because once again you clearly own a black tank top

Bakelitebetty5 karma

My accidental Ripley pic from the other day:


androgeos4 karma

My mom was diagnosed with breast cancer this summer. She had surgery in August but postoperative tests showed there were still some cancer cells left so she opted for a double mastectomy which is happening in October. Honestly I'm scared shitless for her and being away for school makes anxious. I might end up taking next semester off depending on how the results are and whether she needs chemo or not.

What type of cancer were you diagnosed with? I know no cases are alike but I'd like to have a bit of a comparison anyway. Or any advice in general to give someone in a far away loved one role

Bakelitebetty3 karma

Originally they said it was DCIS but later changed it to stage I invasive.

JerseyEnt3 karma

My mom had a double mastectomy about 5 years ago. I never realized how lucky I am to still have her with me. I was only 15 at the time but the thought that my life could be completely different if she didn't catch it early on scares me. Stay strong! Everything little thing is gonna be alright. :] And apparently I need to add a ? to this without being deleted so, who are your favorite bands?

Bakelitebetty2 karma

Haha. Depends when you ask. Tonight it's all about West Coast Jazz, but this morning I was listening to The Breeders and Karate.

And thanks :)

rjperez133 karma

Is your breast cancer estrogen receptor positive or erb2/her?

Bakelitebetty7 karma

Estrogen/progesterone receptor positive, her2+

rjperez131 karma

Yay! That's awesome..at least that's good news hope your chemo will go alright keep on fighting!

Bakelitebetty1 karma

Ha. Neither of those positives are... Positive.

QueefOfHearts3 karma

Hi, Thank you for doing this AMA!

May I ask, how quickly after mammogram/ultrasound/biopsy were you diagnosed?

I found a lump a couple of months ago, went to the docs and was told to monitor it over my next menstrual cycle. I left it 2 and nothing has changed. I've an appointment at the Breast Clinic on this coming Tuesday. I've never been so scared in my life. I'm only 31.

Bakelitebetty5 karma

By the time I left my mammogram/ultrasound/biopsy appointment they were already talking about scheduling surgery.

If they want to monitor yours over the course of your menstrual cycles I'd think that's a sign that they think it's likely to be a cyst, which us a positive thing, right?

I'll keep my fingers crossed for you!

koalio2 karma

Sorry if its a touchy subject, but what is chemo like? I dont know much about it at all besides its a tank full of radiation.. I think? I have just heard its pain to the extreme.

Bakelitebetty5 karma

Chemo and radiation are entirely different. Chemo is a drug or cocktail of drugs given intravenously whose purpose is to kill fast-growing cells in the body, because that's the most basic definition of cancer- cells growing out of control. Radiation is just that, radiation. It's used to shrink tumors and "mop up" after surgeries, and to treat certain skin cancers to make sure that the cancer in a very specific area is destroyed.

As for what it's like, I more or less answered that in another post, so I'll just copy/paste for you here:

"Well, while I'm getting the infusions, ideally it doesn't feel like anything. During round 2 I had a reaction to the Taxotere (I get three drugs each time intravenously, Taxotere being the second out of the three) where I felt as though I was having a hot flash, then my vision went almost completely white, then I wasn't sure if I was going to throw up or pass out. In the end I did neither. They stopped the drip and gave me a bag of antihistamines, then started the drip again slower. Now they stick a bag of antihistamines into me before they start that drug and I haven't had a reaction since.

As for how it feels just in general... Everyone is so different. For me, the fatigue has been the biggest problem. "Tired" isn't the tight word for it. It goes to your bones, and it's debilitating. My immune system is shot to hell, so I have to give myself shots to stimulate my bone marrow to produce more white & red blood cells, so my bones hurt all the time too. Between that and the discomfort from my tissue expanders rubbing around behind my pectoral muscles, there's days when I have to percoset every 5-6 hours or I can't do anything. I'm also anemic, which doesn't help with the fatigue.

But lots of people have it a lot worse. Chemo kills fast-moving cells, which means hair, skin, and mucous membranes. The same mucous membranes that line your entire digestive system. Some people have real problems with that-so far I haven't (knock on wood)."

koalio1 karma

Damn.. That sounds insane. You must be one of the most badass things to ever walk this earth. But, a couple more questions if you dont mind, from when you found the lump to the first action to stop it was it painful just to have? Like just in general would you have known you had it if you couldnt physically feel the bump? And do the effects of chemo wear off, if so how long does it take?

Bakelitebetty4 karma

Psh. I'm not the first, and I'm sure not gonna be the last. It doesn't take a badass to do chemo.

The lump wasn't painful at all. It was just... There. I wouldn't have known it was there at all if I hadn't felt it.

The effects of chemo wear off. I can see a huge difference just in the three weeks between treatments, from being completely clobbered and basically unable to get out of bed for a few days to being almost normal, only too tired to do much. I don't know how long it will take for the effects to completely disappear when it's all over, though. I do know I have to wait a month after my last chemo before I can have my final reconstruction surgery.

tyrannosaurus_fred2 karma

Do you have insurance? I can't imagine the costs involved.

Bakelitebetty2 karma

I'm insured like a mofo.

Anablue2 karma

Did you have an option of only removing one breast ?

Bakelitebetty13 karma

Once it became clear that the right one (the one with the cancer) needed to come off I asked them if it would be a good idea to remove both. One, I have strong family history with breast cancer, and two, with the very large breasts that I had to begin with they would have had to do surgery on the other side to make the reconstruction symmetrical, so I thought we might as well take care of it all in one fell swoop.

Basically, I think it's always an option if the cancer is only on one side, but I was asking about a double before we even got to discussing that part.

AnonymousBBQ1 karma

How is your pain level? Aren't those drains just the yuckiest things ever? Are you as obsessed with Zofran as I was? (Seriously love that drug, I find reasons to get an Rx for it now).

While I didn't have a chemo option for the cancer I had (malignant phyllodes), I did undergo the mastectomy/tissue expansion and several surgeries.

I will tell you that a year and a half later, I find shivering to be quite uncomfortable! It's a very strange sensation in the pectoral sheath to shiver with an implant under there, I don't know, maybe you'll experience that too. Thought I'd warn you! Bundle up!

Anyway, cheers to you, and I'm glad you're doing this AMA. It's great to put a face to breast cancer (and a beautiful one like yours I might add) and I think it's great to talk about it. Everyone, get those boobs checked!

Bakelitebetty4 karma

My pain level, on average, is about a 5 between the bone pain from the neupogen shots and the expanders. I hated the drains, but they were out in just over a week.

I haven't touched the Zofran, haven't had any nausea whatsoever (yay!). Out of curiosity, Why were you having nausea issues if you didn't do chemo?

I haven't had shivering weirdness (yet) but I get phantom nipples when I'm cold!

gobstopper841 karma

It sounds to me like you're on the path to success. I wish you the best of luck. I have two questions: 1) at what hospital are you getting treatment? 2) who do you think would win in a fight between Taylor Swift and Miley Cyrus?

Bakelitebetty3 karma

1) Kaiser hospital in an undisclosed Southern California location :)

2) I'm an aging punk with no cable TV. I read and watch OINB and documentaries on my Ipad. I have no idea, but from the brief internet glimpses I've had of Miley she looks pretty scrawny.

adidasbdd1 karma

How much will this end up costing you and your family financially?

Bakelitebetty2 karma

Hardly anything. I have stellar medical coverage. I also have disability insurance that I've been paying into for the past 10 years. My boring government job is seriously paying off right now.

SO_HOMO1 karma

I'm a nursing student. What have you found particularly helpful and hurtful about the way you been treated/handled by hospital staff (Drs., nurses, PT/OT therapists, etc.), so far?

Bakelitebetty2 karma

I've had generally really good experiences so far. In my case, I appreciate the fact that when the doctors/nurses realize that I'm curious and capable of understanding the more technical stuff they're wiling to take the time to talk about things in detail.

zeymad1 karma

Do you have a bigger chance of getting breast cancer if you have bigger mammaries? ( it makes sense.. but i'm just curious.. is it directly proportional to the size .. the chance of it?)

Bakelitebetty2 karma

I don't know. I know you have a better chance of not detecting it, which means shit can get real before you even know it's there.

cappsss1 karma

First of all congratulations on having this great attitude and point of view regarding the sickness !

How many times did you ask yourself "why me?"

Bakelitebetty2 karma

I had to think about that, and surprisingly not as many as you would guess. I have a science-y background so I can usually answer that question that way without getting all philosophical (read:mopey) about it :)

PaleBlueHammer1 karma

I think you're pretty cool. As a military man who has always had short buzzed hair, lots of women have told me they like to brush their fingers through it. (Well, across it.) Now I have the weird urge to feel your head. :/

Do you shave it or is it pretty much smooth on its own by now?

Bakelitebetty2 karma

The hair is still there, but barely. It's very, very sparse and patchy. I hit it with an electric razor maybe once a week because I like it smoove.

deathcampforjewtie0 karma

Who's your favorite Shark on Shark Tank? Mine are Lori and Kevin, and Mark Cuban.

Bakelitebetty6 karma

I don't actually have a TV. yeah, I know.