Calling all ladies in their 20's

Susie25

Wow, this is amazing! First, it is crazy that there are so many lovely young women going through this awful detour in life on this forum. And I bet for every one of us here, there are 10 more ladies out there. Nuts.

I'm Susie. I’m 25 and was diagnosed May 3rd. My fiancé found my mass and when I got it checked out I too was told it was fibroadenoma. Guess what, they were wrong. I am getting married in September so being a bald bride is something I still struggle with. I feel vein saying it but it’s true! I had three surgeries (lumpectomies and lymph nodes) and now I am in the midst of chemo. Even though I know how much this has sucked (surgery, chemo, IVF to try and save some eggs, all while trying to stay normal), it feels good to see other getting through it too!

luckykitkat09

nutmeg_89:
I started out almost the same as you..why did you decide to skip chemo?
I had my first ultrasound at 18, benign tumor on my right breast removed at 19, then when I was 20 I found 4 cyst and benign tumors in both left and right breast and my doctor told me start out that she didn't want to cut me open anymore and since I was young I could choose to do a double mastectomy..and I was 21 when I did my mastectomy, and 22 when I did my reconstruction. I didn't need chemo/radiation. I'm almost 23 now.

argynis

Great to find young women that are fighting in the same battle. I'm 28 and was diagnosed in March and I am undergoing chemo at the moment as well.

Susie and others: Did you get genetic testing? I was BRCA1/2 negative and through another test a p53 mutation was found (Li-Fraumeni Syndrome) which is probably the resaon for my cancer.

nutmeg_89

I decided not to do chemo because I wasn't ready for the likely side effects. I was told it was very likely that if I went through with the chemo I would start going through menopause. I could deal with losing my breast but I'm young and in a serious relationship and I couldn't deal with the thought of not being able to have kids later. My doc said if I choose not to do chemo they would keep a close eye on my blood work and my MRIs and go from there.

luckykitkat09

I know chemo is going to affect everyone different, the amount given and dose. But that's completely understandable. I was more nervous about radiation. I was asked by my plastic surgeon if I needed it but my doctor told me no. My mother had radiation & chemo for intestinal cancer so she didn't want me to go through the pain either.

luckykitkat09

@argynnis-

I didn't do genetic testing. As far as I know breast cancer doesn't run in my family. But my pathology result said I had Atypical Ductal Hyperplasia (ADH). My mom had intestinal cancer though.

argynis

kathyhong: There is only one breast cancer case in our family - my grandmother had brast cancer in her late 70ies and my other granny had ovarian cancer with 57 - no other cases of cancer.

It is typical that getting breast cancer (or any other type of cancer) at a young age is linked to a genetic mutation (that science may or may not yet know of). That is why the genetic counselour decided to test me and I am glad that I now know what the cause of my cancer is. But I can also understand people that just don't want to know. Being a scientist myself not knowing was never an option for me.

nutmeg_89: I understand your fear of chemo. It is not a walk in the park and of course the risk of ending up in menopause is existent but smaller the younger you are. Has you Onc gone through the numbers with you - I mean how much chemo would increase your survival chance?
I think having chemo increased my 5-year survival by about 50%. Without chemo my 5year survival was 50% and with chemo I can increase it to almost 75% (data by adjuvantonline.com). I know its just statistics and everybody is different but it points you in a general direction on what to expect.
For me the descision was easy: I may want to have kids someday but the risk of having them and dying from cancer while they are at a very young age would be worse for me than taking the risk of having no kids by going through chemo to increase my survival chance. I think I read that if you are below 30 the chances of chemo induced menopause are 10-20% or even lower.

nutmeg_89

KathyHong: you should have the genetic testing. Most insurances pay for it and its good information to have. I got mine mainly for my sisters and my perhaps future children. Mine came back negative which made me feel a lot better. They also put your DNA in their data base and it could help find other genetic links that they don't yet know about.



Argynnis: no I never talked about the numbers with them because once they brought it up and we talked about the risks vs the benefits I knew that wasn't something I was ready for. I had already done a lot of research about it before I went in and I made the decision to hold off on it. If I need it in the future it is still an option but right now I'm not ready for it just yet.

luckykitkat09

argynnis-I suppose that's true..I want to do the genetic testing for cancer..I assume it had something to do with my thyrpid issues..but i do know that my dad side of the family we have a thyroid condition that's genetic though.

nutmeg_89-I was mainly worried for my older sister since she's 10 years older than I am and never had a breast exam..I'm curious and worried if she may end up like me too. My mom however has had frequent exams but she came back good. I would have to call my doctor and see if my insurance would cover the genetic testing and go from there.

SweetheartinTX

Hi All,



I will be joining you ladies. I am 27 years old and was dx on May 24th. Excuse my story if it becomes too long, lol.



I went on my first mud run (obstacle course) on April 6th. I injured myself on one of the wall climbs. My foot had slipped and my right breast caught the brunt of my fall. About a week later, i noticed a lump. My husband encouraged me to go get it checked out. I went to my OBGYN on April 18th. She thought it was just a cyst but said she would send me for a mammo and ultrasound AFTER i had my menstrual cycle. She said if it was still there after my period, to go ahead and make the appointment for the mammo and ultrasound.



It was still there, went for the mammo and ultrasound on May 14th. The radiologist told me i had a solid mass and that it was not a cyst. He told me they were sending me to a breast surgeon upstairs. The surgeon said all signs pointed to it being a fibroadenoma but since it was painful that he would schedule me to have it removed the following week.



Had it removed on Wednesday, May 22nd. He called me personally on Friday May 24th and told me he didn't have good news. The biopsy of the mass showed it was Breast Cancer. I still remember that day like it was yesterday.... i was mortified. He kept talking but i didn't hear what he said because i was hysterically crying. My husband was at work but luckily my parents happened to be at my house. They were able to calm me down enough to call my husband. Since then i have had a double Masectomy and started chemo. It's all happened so fast that i still have breakdowns.



I am really glad i found this thread.

argynis

nutmeg_89, I can understand that you feel not ready for chemo. Who is ever ready for such an ordeal? Unfortunately cancer cells do not care if somebody is ready or not
How is your boyfriend dealing with all this? My husband gave me a lot of strenght and fortunately encouraged me to do all the scans and treatments to fight this damn cancer as hard as possible (oh how even getting blood drawn scared me at the beginning).

SweetheartinTX, welcome! Wow, what a story - glad you found it early! Good luck with chemo!

nutmeg_89

Argynnis,

He is handling it really well. He's encouraged me and supported me every step of the way. As straining as this has been on our life's it has actually brought us closer together. I was extremely surprised he stuck around through all of this especially since we had only been dating for about 3 months when I got diagnosed. We had been together about 6 months when my second surgery came around and I ended up moving in with him so he could help take care of me after surgery. He understood my reasoning behind not wanting to do the chemo and at this point is just making sure I stay on track with my check ups. I made an agreement with him that if anything came up in my blood work or scans I would go ahead and do chemo but nothing has come up yet. I completely understand the blood thing though, in the beginning I felt like I was seeing one doctor or another at least every other day and I swear they all wanted to take my blood every time, I felt like I was going to run out of blood... haha

nutmeg_89

SweetheartinTX, I'm so glad they found it early. It's so strange how everything seems to happen for a reason. It is encouraging to read other peoples stories especially people close to my age and see how we are kicking cancers butt!

Cassandreamy

nutmeg_89: I was 26 when I was diagnosed. I too was not ready to subject my fertility to chemo. My doctor had me do Zoladex injections for 6 months. Zoladex protects the ovaries by shutting down their function. The shots sucked (I basically had menopause for 6 months) BUT without it, permanent menopause can be cause by the chemo. I had my last shot in April, and my period returned in June. I went in for an ultrasound last week and they show that I am now ovulating, a good sign the fertility is still intact! I would discuss your options with your oncologist, or get a second opinion. Also, you may wany to consult youngsurvival.org for additional info on options for young women. I hope this helps! If you have any other questions feel free to PM me!

nutmeg_89

Cassandreamy,

Thank you for the information I wasnt aware of these options.

anapaulac

Hi everyone!! Im so glad I found you girls! Im 28 and I was diagnosed last March while being pregnant with our first baby, since I was already 33 weeks and my baby was big and healthy I refused to get chemo while being pregnant and instead I had a C-Sectio one week later.My baby is very big and beautiful and thank God I w

as able to go through chemo without nausea or extreme fatigue and a healthy inmmune system so I was able to take care full time of him. No able to breast feed though. Chemo and my change of lifestyle worked wonders for me and melted down the cancer completely but I still had a mastectomy and want to take my other breast at the moment of reconstruction. Well sorry I extended myself so much I just wanted to share my story as introduction. ;-)

nutmeg_89

Anapaulac,

You can never extend yourself to much on here. Congratulations on the healthy little miracle!!

kk11

Hi ladies - I have been absent a few months, but I'm just dealing with routine stuff (work, taking care of myself, etc). I am thankful to be healthy and to be surrounded by those I love. My father was nearly killed after being hit by a car while riding his bicycle in June, but he's recovering very well and the accident served as another reminder to appreciate what we have when we have it. 2 years ago, I was still getting AC and getting ready to move to Taxol. I couldn't walk down the hallway of my building without being tired. Now I'm running 5ks with regularity (I've gone up to 10k). A little knee pain here and there, but I don't let it slow me down! I hit my 2 year mark since end of chemo on October 4th, 2 years on Tamoxifen October 18th, and will be taking a break shortly after to try again for a baby. Hopeful that 2014 will either bring me my first born child or at least the promise of one.

Sorry to those of you who have been recently diagnosed. I was diagnosed at 28 and will be turning 31 this year. So far my 30s are better than my 20s. Hope it's the same for the rest of you.

Treadsoftly - How are things going? I know you were trying already for a few months, so I'm hoping you have some good news to share soon.

Tucker519 - How are you doing after your surgeries?

Rosaa - I like the plans you have for making this world a better place. Hope you're doing well and that you're able to do what you hope to do! I agree that there is more for all of us to do with our lives!

Nutmeg - Sorry you were strung along for so long only to end up with this diagnosis. Hope you're doing well after your surgeries.

Susie - Planning a wedding can be stressful enough by itself. And we all know about the stresses of cancer. Both together has to be extremely hard on you. It's good that you have a good man by your side. I've read and heard my fair share of stories of men running the other way (even after they were already married). As for your baldness on your wedding day, I bet you can either get a nice head scarf or just flaunt the baldness. I embraced it pretty quickly after I shaved my head. I felt it showed courage and strength.

Argynnis - I was also tested for BRCA and P53 and tested negative for both. I haven't actually met anyone who tested positive for p53. I know it puts you at risk for other cancers as well, so I'm sure they will keep a close eye on you. Hopefully though this is the only one you ever have to deal with. Cancer in your 20s is enough!

SweetheartinTX - It's amazing how bumping something can bring attention to you something else. I rarely did exams though I encourage them now. I was coming back from the gym and taking my sports bra off and my hand brushed against my right breast and found the lump. How long would it have taken if that hadn't happened for me to realize something was wrong? When it was too late? Thank goodness you bumped your chest that day!

Cassandreamy - Glad the zoladex worked for you. Are you planning on trying for kids soon or are you waiting for that 2 year mark?

anapaulac - Sorry you had to go through that with pregnancy. I've known a few others to as well and they weren't able to take care of their babies like they wanted to during their chemo days, so I'm glad you were able to do most of what you wanted to do to take care of your little one. I'm sure they kept you upbeat on your down days!

Hope I didn't miss anyone since my last post. If I did, it was unintentional!

SweetheartinTX

I feel the same way kk11. Firm believer in everything happens for a reason.



I will pray for a quick recovery for your dad!

Cassandreamy

kk11: I am on Tamoxifen as well... just started a week or so ago. I just moved in with my boyfriend and we are still moving past the chemo phase, not quite ready to be married or have kids yet. I am hoping to take Tamoxifen straight through and then have kids around the age of 32. I was born when my mother was 35 so I'm hoping everything will work out. Have you tolerated the Tamoxifen well? I haven't really had too many side effects... yet.

luckykitkat09

How is everyone? It's been a while since I've been on here.

Cassandreamy

kathyhong - Doing well! I have been fighting leftover fatigue from low hemaglobin (due to chemo) and am slowly feeling better. Hope things are going well for you!

kk11

How is everyone doing? It looks like it's been pretty quiet here. Hopefully everyone is just busy getting back to their lives. I am about 2 months out from taking my Tamoxifen break so we can try again to have a baby. I have to travel for work in January and I'm already trying to time it so that I'm not too close to mid-cycle! I'm still running a lot and finally decided to sign up for my first half marathon at the end of next month (which will bring me to within 1 month of my tamoxifen vacation!). I am up to 11 miles as of the 14th. I'm a little sidetracked this week because of a lower back issue. I can't remember tweaking it, so that worries me a bit, but the likelihood is that's related to all of the running. So I'm taking a couple days off and seeing if it gets better. Today is already a little better than yesterday, but still not great. I guess we will always have that extra worry given our histories, but I am trying to stick to my two week rule (for things that are most likely due to wear and tear, I wait two weeks to see if the pain goes away before going to the doctor). I haven't gotten to two weeks yet since I set that rule. Obviously severe pain and pain that gets worse shouldn't be ignored, but it seems to work well for me. I have a mini trip to Europe planned to see family (I say mini- since I'm only there 7 days) and I leave next week, so it's hectic for me trying to finish up stuff for work before I go. But it's been about 14 weeks since my last vacation, so I really need it. Hope everyone is doing well.

luckykitkat09

cassanddreamy: Feel Better! Eat tons of bananas! You'll get you're energy back ^^

kk11:
lower back pain sucks! I haven't had major back back since I sprained it a few times but it got worse when they did the epidural during my surgery when they took it out. I felt like an old lady crouching over when I walked. I suggest a warm relaxing back and a massage? Or a hot compress
I'm not much of a runner but that's amazing!!!

TreadSoftly

Hi ladies,

KK11 - best of luck with your half marathon!  Im sure your back ache is related to running, but you are right, because of our histories, we will always have that extra worry... Enjoy your mini vacation too, what parts of Europe are you going to?  Im Irish!  You must be so excited re your tamoxifen break coming up!! I took my tamoxifen holiday last January, waited 3 cycles to wash out of my system & actively started trying to conceive in April.  Happy to report that my last period was in July & Im 8+ weeks pregnant!!  My main complaint at present is nausea, uuugghh, morning sickness is horrible! That along with fatigue.... I am a runner too but havnt felt up to doing much in the past 5 weeks....  But Im reading that morning sickness & fatigue are signs that your pregnancy is progressing normally, so Im grateful for that!  First scan in 3 more weeks, cant wait!!

TS0521

I'm 29 and just diagnosed. I have IDC and node positive. the cat scan yesterday revealed 3 additional bad nodes (4 total). Im petrified. How bad is this? I have babies.

Cassandreamy

TS0521: It really depends on the stage/grade/type of cancer and responses to treatment. Have you received your biopsy results?

http://www.youngsurvival.org/breast-cancer-in-young-women/learn/understanding-breast-cancer/using-your-pathology-results/

YSC has a lot of good info about cancer types/stages.

TS0521

cassandreamy- I found out that I have her 2 positive, estrogen receptor positive, node positive, Invasive ductal carcinoma.

Cassandreamy

TS0521 - will you be doing chemo before or after surgery? I had one positive node and did chemo first - after chemo 0/17 nodes tested positive for cancer! Also, being her 2 + was once considered a worse diagnosis but now that there is the targeted therapy Herceptin the outcomes are A LOT better.

http://www.herceptin.com/ has a lot of info about being her2+

Did they give you a % on the estrogen? Or a Ki67 (tells how fast tumor cells are growing)? I was more PR positive than ER positive with a moderate Ki67 %.

TS0521

I started chemo today and surgery will follow 6 three week cycles. They didn't tell me how fast the tumor was growing though.