Who's the youngest?

Maryiz

LASHON2008, great to see you back.  My bones did hurt after I started Arimidex, and of course, I am old enough to be your mother, but, I started taking Naprosyn and my bones do feel much better.  Before you start any of the anti-inflammatories, though, ask your doctor if that would be okay.  Stay well, Maryiz

aquariusgi

Oddly enough it was caught by mere chance. I saw my doctor because I was feling a stifness and discomfort on the left side of my breast. The doctor thought I was being a hypocondiac due to my family history. She sent me for a Mammo and Ultrasound. The technician only checked the left side of my breast and missed it all together. The doctor then came in to see if there was any correlation between the ultrasound and mammo. He found it right away further right from where the technician had been checking. I only understood what I was feeling (lump) until it was identified as such. My MRI is scheduled for next month.

aquariusgi

Can you believe I have been able to get an ultrasound done on the other one? They don't think there's a reason/suspicion to check???That hasn't been mentioned at all. So far, they would like me to monitor it and hold off on treatment until I've decided that I'm done with my family planning. Thanks for the website.

BethNY

hearing that makes me insane... even after I was dx with cancer, I still had to pay for some of the ultra sounds- and I had good insurance.  It's ridiculous.

mela4409

I was recently diagnosed and I'm 24...I can talk to her if you would like.  I'm right in the middle of all of this.  3 weeks post surgery, going through fertility treatments, and getting ready for Chemo.  It's difficult to find people my age with breast cancer.  If she is interested in this website there is a board for young women as well!

patty71

I was dx at age 35.  I am married and we were finally ready to start a family.  My mother died 3 weeks before my dx-she had lung cancer and it was very bad.  I felt the lump 6 moths before and told by gyn about it -she did a breast exam in Feb 06 and told me it was nothing to worry about-just fibrocystic tissue.  6 months later-i went to my interal medicine doctor about my thyroid-i am hypothyroidism.  anyway-i told him about the lump and that my breast looked uneven and maybe i would need ps if it continues.  He looked at it and immediatly ordered mammo and ultrasoud testing-i was so unprepared!!  for some reason i thougt that he was going overboard-surly i did not have cancer!!  anyway after several weeks-i ended up at the surgeons office and he told me that it had to come out-i still did not get it.  He knew that i was in denial and said "I am not saying you have breast cancer-just that I am concerned"  it was like someone threw water in my face-I think he helped me at least realize that this could happen to me.  I was so mad because the gyn that I had trusted with my life for so many years-did nothing but a quick exam-she should have ordered a real test right then and there!!  Because the cancer was in my body growing for so long-that is why I had to endure Chemo and Rad.  If it was caught earlier-maybe only Rad.  It has been two years now for me and i am cancer free-but my life is in emotional storm.  Hormones i am sure-my cycles have returned but sporatic- i am on tamoxifen so this is to be expected.  Will I have children-who knows?  I sometimes wonder if i even want to go down that road.  I am trying really hard to just stay positive.  Yes i am happy to be cancer free-but so scared that i no longer want the same things that i use to..  maybe this website will help me out-when i go to the local support group-i am like the baby there and i feel selfish for complaining because the older ladies to me seem very sick sometimes and i feel like i should be supportive instead of angry. anyone else feel the same?

mela4409

My first doctor also told me that the lump was nothing...but I went in for a second opinon since breast cancer runs in my family.  My doctor suggested that even though I was ER+ I could still go through a low dose of fertility treatments (which I'm doing now).  So hopefully we can freeze some embryos for later use.  I haven't had Chemo yet so I haven't been in too much contact with older women who have cancer.  I constantly feel like every nurse and doctor I see feels so sorry for me because I'm so young.  It gets tiring after a while...I stay really positive around everyone, but sometimes fall apart at home.  In the midst of all of this my fiance and I are planning a wedding, which we hopefully won't have to move...but I don't know yet.  The hospital that I went to said that they had alot of younger women wanting to start their own support group, maybe you could mention that to whoever is leading your group?  I haven't gone to a support group yet, Dr. appts are overtaking my life at the moment.  I'm just hoping to get back to my real life, go back to work, coach, and do normal things.  Although I don't think life will be back to normal any time soon.

BethNY

The pity about your age never stops. So get used to the sighs, the gasps, and the oh, I'm so sorry, you're so young.... b/c it will happen literally for years to come.

I never quite understood it, until I was at the YSC conference, and I saw a table of 19 year old girls all on chemo.  It took my breath away and for the first time I understood how people looked at me. 

BUT- you're young, and a tough cookie, so all the pity in the world doesn't make a difference in the war you're about to wage against cancer.

I feel like my young friends with cancer all have a similiar attitude-- angry as hell, and not about to let cancer steal anything else!

Live support groups are really difficult if you are young, and it is an open group.  I found better support here and at the YSC all at the tips of my fingers on my laptop-- so no matter what time it was, and how sh*tty I felt, I could find the help I needed.

We're here for you guys!!!  Mela- b4 you start chemo, go to the treatment forum and find the group that's starting in your month... its so important to have friends going thru the same tx at the same time as you!  You guys can bitch about constipation and hair loss, and you will make bonds that can last a life time.

mela4409

Thanks BethNY...I will take your advice about the treatment forums, and I agree with you, I have found so much support in just the last few days on some discussion boards and chat rooms. 

 I meet with my oncologist for the first time tomorrow and I will find out more about my plan for chemo and when I will start.  I am a little nervous, I know no matter what it's going to suck, but I hope that it is as good of news as I can get. 

I guess I'm as ready for all of this as I can be.  I mean-- surgery is already over so I think of that as one big step, now I just have to get through the next few months.  It's so nice that we can get the support we need here rather than search around for groups of people my age in the area.  Thanks for your help!

Augustgirl

Hello- Im new to this site but wanted to share. I was diagnosed one year ago with stage 2a invasive ductal breast cancer at 28 years old. Im now 29 and in this past year have had 7 months of chemo, 5 1/2 weeks of radiation and had a bilateral mastectomy (lat flap) with reconstruction.

I truly believe that prayer and a positive attitude got me through this past year. I am doing great, am active, worked throughout it all and am still going strong!! I would love to speak to women my age or younger to help them get through this difficult time.

BethNY

7 months of chemo seems so long.... what were you on?

I did dose dense-- 4 AC then 4 Taxol... then I had my reconstruction, and then started Herceptin.  Back then it wasn't given with the 12 Taxol that it is now.

Mela- chemo definitely sucks, but I can totally give you a crash course once you know what drugs you're gonna take. There are some small bonuses, like being smoother then a baby's bottom all over your body. And saying to your fiance, which color hair do you want me to have tonight? This is your chance to be a redhead, Blond and everything in between.

Also, this is probably the only time for the rest of your life, that you are going to stop, and rest, and heal.  You will learn things about your body and spirit that you never imagined possible.

And I can tell you being four years out from this beast, you will have such a higher level and appreciation for love, life, and laughter that will be light years ahead of your 24 year old contemporaries.

In the midst of all this-- when you're bald, boobless, sick, bloated, exhausted, constipated, and plain pissed off, you'll walk past the mirror- stop, then step back to the mirror. You'll lean in as close as you can get, and stare at this strange person you see in the reflection.  And suddenly, you'll see something-- either a sparkle in your eyebrowless eye, or a flash of your pearly whites even though you taste chemo mouth on your tongue, and you'll realize that YOU ARE STILL IN THERE.

And then you'll laugh, and say, Hell yeah, I'm still in here!!! Then wink, and walk by the mirror.

Moral: Inbetween those moments of sadness, and madness, you'll be just fine, because you are still you.

Melskoch01

hey girls, I was diagnose last year at 23 -invasive ductal stage 2a. I totally felt like I had no one to talk to my age. I found this website recently and I've been finished with all my treatments since last feb. I hope that this girl goes to GMA, I just think that people need to realize that, once you hit pubery, you can get bc. This site is so fantastic, I wish there were more out there. I feel like I can talk to anyone. I know that I felt alone when I was dx and during treatment, only now do I realize that I'm not and can get support from everyone around me. I greatly appreciate it!

Hugs to everyone!

Missy

mela4409

BethNY-thanks for the advice...definately brought tears to my eyes (doing that alot lately).  I had really long hair and got it cut to chin length today so it won't be so bad when it falls out.  I will be having 4 doses (2 weeks apart) of A/C and then 12 weeks of Taxol.  I ordered some scarves and currently looking for a wig too.  That will take me well into March, and I plan to start in about 2 weeks.  My oncologist is wonderful, but I don't think anything can prepare my for the hairloss and other side effects.  I'm just so glad I have supportive friends and family and wonderful people to talk to on this website!

BethNY

Mela- i just got back from Jamaica-- but I wanted to tell you if its not too late to shave your head before it falls out. I cut it to chin length- and then to a GI Jane cut thinking I could handle it when it falls out- and truthfully it was a mistake--

do yourself a favor and shave!

mela4409

Thanks BethNY...I start chemo next wednesday and I'm preparing myself for that.  My oncologist said that my hair is going to fall out about 14 days after the first dose...was it like that for you?  Hope you had fun in Jamaica...I'm jealous it's about 30 degrees here in WI today!

BethNY

don't be jealous- we had a tropical storm and only one day of sun-- don't get me started.

My hair started to fall out on day 17. You'll know when it's getting ready to release. Your scalp may feel dry, and itch, or feel tingly and delicate.

YOU SHOULD SHAVE AND BE IN CONTROL OF THIS.

I thought I could handle it falling out, but I was WRONG. It comes out everywhere- on your clothes, your bed, the shower, EVERYWHERE--- and I'm not saying this to scare you at all. But it will be all over your pillow if you don't put a cap on to sleep in.

You look sick when its falling out- and it doesn't hurt a lot- just a little bit---

YOU CAN AVOID ALL OF THIS!!!! After your second chemo, get some friends, and a razor and SHAVE IT. You think it's totally devastating, but once you're bald, you look at yourself, and you're like- OMG- that's it??

Your wig and scarves will fit so much better once you're bald to. And rubbing your head feels really good, as does letting the shower water run on your bald head...

please trust me even though I'm technically a stranger. I'm telling you the one thing that I'm certain of-- that you don't want to go through letting your hair come out by itself. You should shave it first.

Are you all set for chemo- or do I need to give you a crash course?

mela4409

Thanks BethNY...I'm planning to shave my head that week after my second Chemo...and I just bought a bunch of scarves so I'm ready!  I have talked to a few people about Chemo.  Most said to drink alot of water before and the day of and to plan to rest the remainder of the day.  I don't know if I mentioned, but I will be having 4 doses of a/c and then 12 of taxol.  Anything else I should know for the first day?

KPolasek

Girls .... I am sorry in a way to interfere with a "younger" generation post as I am a 55 year old who is a breast cancer survivor.  I was diagnosed last year, had lumpectomy 11/1/07.  I think that no matter what age you are .... there is extreme anger for what might be taken away from you.  When I was in my 20's I could not get pregnant .. went to a fertility specialist who found out that I was suffering from Hashimoto's disease (hypothyroidism) and that I had endometriosis.  I had been barren for 7 years .... went through treaments, surgeries, and finally had a baby girl.  And, now, that baby girl (who is 30) is facing testing for breast cancer .... possibly IBC.  My heart is breaking because if she has it .... it probably came from me .... I went through all that pain and agony to conceive and now grieve that I may have passed on this disease to her ....Dang this dang disease .... I have beautiful grandchildren .... her children ..... I lost my g''mother when she was 53 years old .... a 29 year old cousin who died from pancreatic cancer (3 little babies), and a 30 something aunt and just recently a wonderful uncle who was 80 ..... it hurts ... it hurts bad.

I guess .... that I want to say to you all ... this disease hurts, no matter what your age is.  We all lose no matter what our age .... cancer is no respector of age and it can be passed on to our children .... and that makes me angry.

I am alarmed at how many young people are dying from this disease .... and not just from breast cancer. 

Yell at your insurance companies if they refuse to pay for testing .... be a SQUEAKY wheel ..... call them everyday if you have to .... ask them what part of lawsuit don't you understand ...

One more thing ... I mainly came to this thread to see if I could get some insight regarding my dtr's possible breast cancer .... and I did find some good websites for her to visit.

Kay, wife, mother, grandmother and a cancer survivor ... too

lexislove

0

sherrina

At 33, so far here in perth, australia, i have only come across 2 other girls younger than me, at 31 and 32, who have beendx with BC.  The hardest part of dealing with this has been how dismissive some of the older women that have also had it have been of my stiuation. I have two small kids and a husband who works away for 2 weeks at a time, and my family have not been supportive in a good way...  The youngest girl I knew of - besides the 14yr old on Oprah (bless her, the poor little mite) was 19, and she has since gone on to have babies and a marriage.  There is hope for us all I suppose, but sometimes it's a bit hard to see the light through the fog of anger, despair and confusion that comes with this awful equalizing disease.

BethNY, don't apologise for being angry - that would mean everyone would also have to and it gets kinda repetitive, especially if you are and were well within your right to be angry... Isn't this forum supposed to be an environment you can express yourself without apology?

BethNY

Welcome LEXI! You can totally get the silicone implant after rads. You should ask your PS if he uses AlloDerm or Strattice. For everything you need regarding reconstruction check out

www.breastreconstruction.org

I'm glad you decided to post after all this time. AND-- now that you're done with Herceptin, your hair growth will take off-- mine doubled in length as soon as I finished herceptin! Congrats on being NED, and pushing forward-- the reconstruction will be over before you know it, and you'll be on your way to moving beyond cancer and reclaiming your life.

Mela- drink and pee is the motto for chemo. Before the first tx you'll be a little anxious- just not knowing how you're gonna feel etc.  What anti nausea drugs did you get?  You should be drinking 60-70 ounces of fluid a day, and sometimes water tastes like shit, so your best bet is to stock the fridge with a variety of iced tea, gatorade, apple juice, water with maybe powdered flavor like the true lemon, true lime or true orange packets.

You should rinse your mouth with biotene mouthwash a few times a day. Lots of hand washing, and get copies of all your blood counts before each tx, so you can better judge when you can go out and party a little vs when you should stay home, and NOT be around germs. Try to avoid germy places like the movie theater, airplanes when your counts are low... but chemo doesn't mean you can't have a life. Bring to treatment, a drink, gum or mint sucking candies, a stupid tabloid magazine- b/c books are hard to read when your eyes are tired and your head is fuzzy from meds. Bring ipod or a dvd.  Did you get a port? If so wear a zip hoodie to treatment, so its easy to access your port. Bring a throw or a little blanket for when it gets cold- the drugs are made fresh and they are cold in your IV. Bring slip on sneakers b/c if you're drinking enough you will have to pee during chemo, and its a pain in the ass to always bend over and put shoes on and off during treatment. You should be peeing pink from the adriamycin before you even leave the hospital. Its so important that you pee out the toxins from the chemo in the first three days. When you're hungry eat. When you're not, don't. There aren't really rules-- but if your counts are low there are things you should do, like eating organic- watching all the skins- like on chicken or apples- thats where all the germs and pesticides are so get rid of the skins. Wash everything really well, and take it one day at a time.

DO not compare one treatment to the next. Even though its the same drug, every single treatment will be different then the one before.

Don't wait to take meds once your home. If you get behind the nausea, you're screwed. When in doubt, take an anti nausea pill.

And of course- when you're feeling all these weird things happening like chemo mouth, and extreme fatigue or constipation- check in with us, and we'll get you through and help you out as fast as possible.

lexislove

Thanks Beth for that reconstruction site!! I added it to my favorite list!

I've been wondering about the hair thing and Herceptin. I actually got hair extensions on Oct 10 /08 and my hair at the time was about 2.5 inches. ~~~ Ummm.... I FINISHED chemo on Feb 12 / 08!

 I thought that I would have had more hair by now.It's kind of depressing actually...lol. thats why I got the extensions.I thought oh god at this rate it will take 10 years for my hair to look somewhat "normal" again.

BethNY

Nah-- not ten. The first year sucks. The second year you would have a bob length without extensions- by year three you're at the shoulders- It really will take off after herceptin...

I'm sure your extensions look FAB!!!!

bee5467

Lexis --

My question to any of you fabulou ladies, is it ok to go a head with a silicone implant even though I have had radiation to my chest? 

I did, and everything turned out just fine, so far.  Radiation ended July 2, silicone implant in August. It felt a little hard for a few weeks, but now it's softened up, and to date, no problems. All the best to you, I'm sure you'll be fine. 

mela4409

BethNY...thanks again for all of your tips.  I stocked my fridge yesterday, I just have to make sure to get some mouthwash.  I have heard that there is a recipe for mouthwash....or is it better to just buy the stuff at the store?  Thankfully I have a port, I hope that will make things a little easier!   I will let you know how everything goes....they are suggesting I get a flu and pnemonia shot tomorrow.  I'm nervous about the nausea at my first chemo treatment,  I always seem to be very sensitve to meds.  I'll get right on those anti-nausea pills...not sure what they plan to give me yet.  Thanks again!

BethNY

YES FLU SHOT RIGHT NOW-- has to be 2 weeks before your first chemo so DONT WAIT.

That was seriously the one and only flu shot I ever did-- just do it.

The magic mouthwash is an rx, and thats given if you get mouth sores, but if you trust me and get the biotene, and keep your mouth clean and moist, you won't get the sores, and you wont need the RX stuff- the biotene is OTC and works great.

Get EMLA cream for your port. You glop on a dollup an hour before tx, and put a piece of saran wrap on it. You won't feel a thing when they stick you. So wear v neck shirts, and a zip sweatshirt- to make access easy. Also, the best thing about the port, is that your hands are free and it makes everything from peeing to realxing SOOOOOO much easier during chemo.

Ices, and watermelon, and soup are great for when NOTHING tastes good. You'll know what I'm talking about by treatment #2. Your period may stop, it will be pretty heavy when it's the last one- a little slow dark heavy bleed, is usually the sign-- but no worries, it will come back- and have fun not having to buy tampons or shampoo or products galore.

Remember to store all receipts, wigs, scarves, gas, mileage to hospital-- ALL TAX DEDUCTIBLE.

I can help you further if you need with that-- just let me know.

Tell me what anti nausea meds you have, and I'll go over them with you. You should not THROW UP from chemo-- if you do, they will tweak your meds to get it right. There is a lingering light feeling of nausea during chemo, but you will learn to manage it. If you want to I will send you a PM with my phone number if you want to go over everything on the phone...

Remember, the first chemo, is mostly fear-- of the unknown- so keep breathing. You can laugh, or cry, or get angry-- sometimes emotions are all over the place, but it's totally cool.

You are going to kick ass!!!!! Think of chemo as your ammunition against this piece of shit cancer that has completely interuppted your life, and tried to f*ck up your wedding...time to show cancer who's the boss!!!!!

mela4409

BethNY-You continue to be such an inspiration and great help to me.  Thank you so much for your tips.  EMLA cream....can I get that over the counter?  They let me get my flu and pnemonia shots today even though I start chemo on Wed,  hope that works out for me!  Nice to know about all of the tax deductible items....I will keep track of all of those!

SandyAust

Hi Sherrina,

I just wanted to pop in and say hello.  I now live in Hobart but I lived in the West for 17 years including 12 years in Perth.  I was diagnosed with breast cancer four years ago at the age of 36 when my twin boys were four.  We moved to Hobart 18 months ago because my Mum was dying (from melanoma, she also had BC at 49).  We are about to head off again to Queensland due to my husband's work.  I thought we were going back to Perth but at the last minute it changed to Brisbane.

Anyway I don't know much about your situation but if you need someone to talk to feel free to PM.  I don't know if you are public or private but I am happy to give you the names of my Oncologist and Breast Surgeon as I was very happy with them both.

I know it is tough when you have young kids.  We had no family at all in WA, fortunately my husband's work was supportive and he could take some sick days to help with the kids around each chemo treatment.  Although I remember one time taking them to swimming lessons at Belmont Oasis and the swimming teacher helping me to change them after the class because I felt so sick and had noone else to help.

Just another thought, there is an in-home childcare group called Wanslea.  You are entitled to use their services if you have three or more children under school age at home or if you have a serious illness.  You would defintely qualify for this assistance.  Once again I don't know where you are at with treatment.

Take care,

Sandy 

BethNY

EMLA is an RX that your Onc should give you.  I know there is some info about what is tax deductible on the home page here...

you can even deduct lunch at the treatement place if your tx is longer then 4 hours- and it will be-- you'll need pre meds, and all, so from the time they start, to the time you get your port flushed out to go home, it will be over 4 hours. So you can save all the receipts from the hospital shop= or wherever you get drinks/snacks/food or whatever. All your mileage, copays for your onc, co pays for your drugs, copays for the lab or whatever, any hats, scarves, or special bras you need for after surgery, any cancer donations you make, if you have to cobra your health insurance, you can deduct the monthly cobra payment, the biotene, or any masks or gloves or stuff like that for around the house.

If you choose to go to acupuncture, or reiki as complimentary cancer care- thats all deductible to.

you'll need to bypass HR block, and go to a real tax guy to help you with everything.

You can get a free folder from laf.org (livestrong.org) to help you kep orgainzed with your reciepts/appt schedules/lists of all your drugs and meds/blood counts path reports etc.

mmschmus

I have been looking on many websites for info on hair extensions that were added after chemo.  I ran across your reply to someone else.  I used to have beautiful long hair and mine is only 2 1/2 inches long but so disappointing.  How did your extensions turn out?  Is there a salon/process you recommend?  Any info is helpful.  My self esteem has taken such a hit with all the changes from treatement but I think the hair loss hit me the hardest.