Just finished fighting aggressive stage three breastcancer. AMA!

Were there any signs or symptoms that you noticed before diagnosis?

I found the lump in my left breast myself. Since I had stopped breastfeeding just a few months before, I thought it was just an inflammation in a mammary gland, but I still went to the doctor.

They sent me to do a mammogram, which became an ultrasound and then a biopsy. And then two weeks later I was sitting with my husband and getting told I had cancer.

When people say 'lump' what did that feel like to you? How different from the normal fatty tissue texture was it? What it spheroid? Oblong? Smooth, lumpy, etc?

It was basically a hard ball on the left side of the breast. The best way to feel for lumps is to soap up in the shower and slide your fingers along the breasts in circles. Any piece of tissue that doesn’t feel like the rest of the breast should be noted.

I wonder how many women are touching their breasts now and check them for any lumps. (no, definitely not me *cough*)

:-D Give those boobs some love!

2 weeks? i am far from being a doctor, but that sounds rather long for a potentially fast growing deadly tumor? time sounds like such a crucial factor, that i assume there could ve been done much more if acted faster?

Actually, two weeks wouldn't do any difference in this case. Two months, yes, but not two weeks. My oncologist specifically said that they could hold the treatment if I wanted to take out some eggs beforehand, since pregnancy will be very difficult after these treatments, but we decided to just start the treament right away.

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You do realize that cancer is non-transferable right?

Did you have doubts since the ones telling you this would profit greatly from what they would do to you if you believed them?

No, because the doctors in Sweden don’t make money like that.

Hi fellow cancer survivor! I just want to say congrats and I know how you feel. I had breast cancer at 38. I am now almost 43. I too had an aggressive cancer and the doctors told me that if it didn't come back within the first 2-3 years I would be out of the woods. I too had chemo, surgery and radiation therapy. How do you feel psychologically? For me one of the hardest part was dealing with the aftermath, when I was left all alone with no doctor to guide me. It sounds crazy I know. I hope you won't feel this way though. PM if you want to talk.

Hi there!

That feeling is actually very normal, and here in Sweden they are running campaigns for something they call the "Cancer hangover". Basically the feeling of "What now?" that comes when you walk out the door after the final treatment.

I think I'm doing pretty ok, as I have had regular talks with a counselor about how to handle life both during treatments and recovery. Also, since I'm in a study I will get check-ups every three months rather than the usual yearly one, so I still feel like I have regular contact with the doctors and nurses.

How are you feeling right now?

I’m pretty good. Still seeing some effects from chemo and radiation treatment. Mainly burns on my left side and some massive fatigue. But the hair is growing back at least. 😁🤘

How far into radiation were you when the burns began to appear? I’m in my tenth treatment and haven’t seen any skin changes yet.

It was right at the end, during the last two weeks.

Hi! Thanks for doing this. I’m a child of a stage 4 cancer patient and find myself at a loss for words sometimes around my dad. What are some of the best/most encouraging things that people have said to you about your illness? I want to be encouraging and loving, but I’m also prone to saying the wrong thing/being awkward. It’s a tricky situation to be in with the uncertainty about the future and how long he’ll even be around.

Also, I really hope you’re doing well. Cancer is a bitch.

I'm so sorry for the late reply! I'm sorry to hear about your dad, and I hope his treatments will be effective.

Since I don't know the age of you or your dad, the examples I can give is somewhat general, but I hope they help you.

The most encouraging thing I was told was actually from my doctors, and was: "You are going to feel like shit, but we are doing it so that you will survive." It really made me feel like I could beat this thing.

The best thing you can do is listen, and maybe help with practical matters, like cooking, cleaning, driving them to appointments, and generally pick up the slack. If you don't live with them, make a bunch of meals for them to keep in the freezer, so they always have something to eat. Cold food worked best for me.

Something I found a bit annoying (might not apply to everyone) was that everyone was telling me how "strong" I was. It got very frustrating, because most of the time I didn't feel very strong. I know people say it to encourage you, but finally I just got sick of hearing it.

One thing you can take your cues from is how your dad is handling it. If he can joke about it, don't be afraid to laugh. And maybe make some jokes on your own.

And don't be afraid to ask what he prefers. Maybe he just wants you to treat him like normal. I find that mostly it is the friends and family who have a harder time accepting what's happening. He might already be at peace with it whether he will pull through or not.

Good luck to you both!

In a previous question, you mention that you remember thinking "can you shut up so I can call my mom" when the doctor was going through the treatment. How would you have preferred to have been told about it? And what steps should the doctor have taken while telling you about the cancer for the first time? I am a doctor and would like to prevent these thoughts arising in my patients if I come across situations like this. Could you enlighten me?

Also, congrats on beating cancer! All the best for your future! Cheers!

Like someone said before, maybe asking if I wanted to just take a moment before discussing the treatment would have been nice, but I understand that doctors only have a certain amount of time to tell the patient what they need to know.

I appreciated that one thing she said was that I was going to get well (don’t lie about it though, of course), and also that I should be careful when I googled this type of cancer, as the online articles might be a few years old, and survival rates were much lower back then.

I like that she didn’t drag it out, she basically said: “We looked at the biopsy, and I’m sorry to say you have breast cancer. You have a tough time ahead of you, but you’re going to be ok.”

But I’m a pretty no-nonsense person, so that approach might not work for everyone.

What was the hardest part?

Mentally it was feeling that I wasn’t being a very good mom. 😔 My daughter was 10 months when I was diagnosed, and I just couldn’t be the mother I wanted to be. Kudos to my husband for doing practically everything for ten months.

Physically, the chemo was just plain hell, and I wouldn’t wish it on anyone.

I really hope you still don't feel the same way in hindsight. I know your daughter's quite young still, so she may not quite understand the gravity of the situation. That being said, when she grows up and gets a better understanding of all that you went through (while thinking about her) - she'll know you care for her more than anything in the world. In the end, you did everything you could for your daughter given your situation, and that's all anyone can ever ask for out of a parent.

Congratulations to you on getting through this and now having the chance to spend some well-deserved time with your family. I wish you all the best!

Thank you for your kind words! I have gotten some perspective now, so it’s not as bad as it was. And I am glad that she was so young she’ll have almost no memory of this time.

Hear hear. I'm nearly halfway through chemotherapy for triple-negative stage 2 breast cancer and I swear, the mastectomy recovery was a breeze compared to chemotherapy. Best of luck going forward!🍀🍀

Best of luck to you too!

The lump

duuuude! LOL!

Congratulations. If you don't mind me asking, how much were the medical costs?

We have a system in Sweden where you never pay more than 1200 SEK in doctor visits and 2200 SEK in medications over a 12-month period. So that’s what it cost me. So I will continue to have free visits and medications until the end of May of this year.

Now that you are done fighting cancer, what will you do next?

Rest! And spending a lot of time with my daughter. And then in the summer I’m going to Sweden Rock Festival.

First of all, congratulations! You made it.

My question: how do you deal with the bodily changes that you had ever since your diagnosis?

Thank you! It’s been ok, some things were worse than others. I didn’t mind the hair loss, but I HATE feeling out of shape, and it’s taken me a very long time to accept that it’s going to be a while until I feel like myself again.

They didn’t have to remove the whole breast, so that feels ok, but it does look a little different from the other side. Luckily my husband has been really supporting, and keeps telling me he loves me, and that I look great (the liar😂).

Your husband isn’t lying, he’s glad to have his wife and mother of his child that’s the most beautiful thing to him, any shape you might be in. I wish your whole family many healthy and happy years.

Thank you so much!

Did you win?

Hopefully. This type of cancer usually reappear within five years, so if I can make it that long without it returning, I should be ok.

• What was your initial response to hearing you had an aggressive cancer?
• Do you entirely trust standard medicine and your doctors?

• What was your initial response to hearing you had an aggressive cancer?

Very numb and calm. I do remember thinking as the doctor was going over the treatment: “Can you just shut up so I can get out of here and call my mom!” But I didn’t zone out or panic.

I didn’t cry until maybe two days later when they called to tell me that they found cancer cells in my armpit.

• Do you entirely trust standard medicine and your doctors?

Yes, completely! Everyone was very open with what the treatments were doing, and how the cancer was reacting. After six chemo treatments, the tumor had gone from 60 mm to 2 mm.

Which drugs did they use for chemo? (Maybe... carbo/taxol?) are you using Herceptin now? If you are, how long will you be on that medication?

I work for oncology haha. I’m glad you seem to be over the hump and I wish you all the best during your recovery!

Hey! Good on you for choosing a profession that saves lives. You have my outmost respect.

I was treated first with Docetaxel and Perjeta x6 along with injections of Herceptin. Then I had surgery, and then some more chemo called EC (Epirubicin and Cyclofosfamid) x2.

I will continue to get shots of Herceptin until this summer. And I have to take hormone pills for another 5-10 years.

Any particulars on the radiation? How many days of treatment? Were you treated while lying on your back or front?

(I work in a cancer clinic in America, just curious what kind of setup you use in Sweden. Thanks!)

I was given 25 +8 days of treatment. 25 days for the whole upper left side, with radiation from 7 different positions, and 8 days just where the tumor was located, with radiation from only two positions.

I was lying on my back the whole time. I’m gonna add a pic to the proof if you wanna see what the machine looked like.

Sounds somewhat similar. Over here we either do 28 + 5 days, or for some older patients, 16 + 5 (but a higher dose per day). Usually 4 positions for the whole side, then 1 or 2 for the tumor bed.

Will be praying for a positive outcome and as little anxiety as possible. It's tough to have cancer at such a young age, especially while having young children. You have shown amazing strength to get through all this treatment! (And props to your husband for being so supportive too!)

Edit: actually it would be fun to see what your treatment room looks like! (We call it a 'vault' over here.)

Photo is now added to proof. Enjoy! 😁

What did you think about during your radiation treatment sessions? Any reoccurring thoughts? Or just random skit?

I was actually counting stars on the ceiling. I just never seemed to get the same number twice. 😂

you ever play D&D?

No, I never have. 😁 I think I would be extremely bad at it if I tried.

Where did you draw strength from for this fight for your life?

My daughter and husband. I really didn’t want to leave them.

And chocolate. Lots and lots of chocolate. 😁

What is your favourite chocolate to buy in Sweden?

Lindt Excellence is pretty good. And chocolate covered licorice is never wrong.

How are you such a badass? And what advice do you have for my 8-year-old nephew who is doing chemo and wants to quit?

Hahaha, I don't know, maybe it runs in the family?. :-D

I'm so sorry for your nephew! I don't know his diagnosis or prognosis, but my doctors said basically: We are making you feel like shit now, so you can go on and live a great life later, and that really helped me.

Give all my love to your nephew!

Any time a question or statement starts off the way mine is about to ‘please don’t be offended’ or ‘please don’t take this the wrong way’ inevitability the person is (rightfully some times) offended. I also don’t want to take away from your success, my mom has breast cancer right now so I certainly try to understand the experience best I can.

My comment:

I’ve always felt it weird to go along with the ‘fighting’ narrative when someone is sick. Do you feel like your attitude played an outcome in your recovery? I’m of the opinion that illness isn’t something one can will away, western treatment is the only real choice, and when western medicine fails I would prefer not to imply the patient didn’t fight hard enough. Does that make sense? When people say they fought and won is that speaking to the disease or is it more about their attitude toward life? I do wish you all the best!

Edit: My mom has stage 4 Invasive Lobular Carcinoma and it was discovered so late despite on schedule exams. She’s had it for years now and her ‘numbers’ as she says still look good.

I’m not offended at all, and I’m glad you asked.

No, I’m pretty sure that my attitude had nothing to do with how my cancer reacted to the treatments.

While I might say that I “won”, I would never say that someone lost. And deciding to stop treatments when they are simply lowering your quality of life while maybe prolonging it with just a month or two is not giving up, it’s taking control of the time you have left, and that’s brave as hell.

I “fought” by believing I was going to be fine, and trying to make the best of the situation. You can see in one of my other replies that I disliked when people told me that I was strong. To me, that was wrong because my body was pretty much breaking down, and I felt anything but strong.

Lots of love to you and your mom.

Shieet, congrats, mydude. How do you feel noew, all things considered?

Thank you! I’m feeling ok, but my body is worn, so I won’t be running any marathons this week. 😁 Mentally I’m just drained, and it’s hard to believe it’s finally over.

Congratulations on beating that son of a bitch.What were the struggles involved, individually and with your family? Did having a child make it more difficult?

I think having a very small child made everything ten times harder. There's just no way you can tell a toddler to stop being so demanding. :-) And she could feel that something was off, so she didn't sleep very well for the first couple of months, making us have to deal not just with the treatments, but lack of sleep as well. Thankfully, my husband is an absolute champion, and since we've been together for 12 years now, we can handle pretty much anything.

Fortunately we didn't struggle very much financially, it was mainly just trying to handle daily life, and we are lucky to have great relatives and friends helping us with pretty much everything.

For me, the worst struggle, that wasn't about side effects from the treatments, was a feeling of guilt and just being a burden to everyone. Fortunately I got counselling to help me deal with those thoughts.

How real did the possibility of death feel to you in this experience? Has it changed your daily life in a substantial way? If so, how?

When I first got diagnosed, the doctor told me that I would most certainly be fine, so I didn't think I might die at that point. But about two days after, when they found that it had spread to my armpit, I did break down and thought I might die for a while.

But when they explained that it didn't change the prognosis, I sort of got over it, and then I just didn't think about it very much.

I try to take care of myself more now, but I haven't done any radical changes to my life.

Do you have a history of breast cancer in your family or other genetic risk factors?

No, there is nothing in my family history. I had one great-grandmother who had cancer in her uterus, and she managed to live with that for about 40 years. We did genetic testing and found nothing, so basically it was just random.

Has this experience made you superstitious in any way?

I was sure I was going to die at first because I got my diagnosis on the same date that my stepfather died (years before, not the same day). But then I just felt stupid for thinking like that.

So no, no new superstition for me. Which I’m very grateful for.

What is some of the best advice you could give to someone currently battling with cancer?

Accept all the help you can get from friends and family.

It’s ok to tell people that you’re too tired to talk/meet.

Use your limited energy on the important stuff.

Laugh when you can, cry when you feel like it.

Don’t be afraid to seek help from mental health professionals. Cancer treatments are just as draining mentally as they are physically.

How did you first find out? Was it a lump, a screening, or something else?

I found the lump in my left breast myself. Since I had stopped breastfeeding just a few months before, I thought it was just an inflammation in a mammary gland, but I still went to the doctor.

They sent me to do a mammogram, which became an ultrasound and then a biopsy. And then two weeks later I was sitting with my husband and getting told I had cancer.

Was it passive before it became aggressive? Or has it always been a jerk.

Always a jerk, dude! Always a jerk.

at what age do children stopped being X months old and get converted to years old?

After two years we just get tired of keeping track. 😉

Are you bored right now? I mean, you’d have to be pretty bored to post an AMA.

And how bored must one be to read them and make such wonderful comments? 🙄

How are your tits?

Fucking awesome!