Calling all ladies in their 20's

birdgirl: I finish mt chemo May 25th which means yesterday I got done with 5 and 1 more to go, YAY!! Just want to say to ladies just starting chemo, I know its rough and you will get discouraged sometimes but just know that it does get better! I will be so happy when the last 1 is done and I can starts rads, so I will be closer to getting all of this over!

Well I hope all you ladies are doing well!

Hello



My names Sarah and I'm 21. I got diagnosed with DFSP(dermatofibrosarcoma), for some reason the namehas stuck with me, along with the spelling hehe, last year in September. So the whole cancer thing is still new to me. Fortunately my DFSP was very benign(which was lucky really as I had had this lump in my boob since I was about 6) I had my big op' in November and so everything moved pretty quick for me!! I'm now luckily just dealing with a scar and only X-ray check ups. No chemo for me.



I just really wanted to say hey, and despite my whole experience was very quick and I don't have to have any major recovery, it was still bloody scary and I'll be more than willing to answer questions, even silly ones ie it was my first time ever going "under", being "knocked out" and was asking everyone I knew what it was like. I don't like needles and was extremely panicky thinking I would wake up with needles sticking out of me!! So yeah silly things like that its always better to know then to imagine and worry.

Hey All, in TX just finishing the next round of appts!  So it looks like my Margins surgery is the 24th and then I start rads on 6/18  I have simulation on the 12th.  I get a full 33 days of rads down here in TX.  On an up note, the MO down here is optimistic (his nurses words) about my treatment and feels I don't need to keep in my port but will defer to my regional MO who recomends keeping it for a year.  The surgeon at MDA said the anathesiologists wont use it during surgery so there really is no reason to keep it in "except" for reoccurance!  I have until the 24th to decide, any opinions? 

Hi! You are all very strong women- wow! I'm not sure how I fit in on this board but I'm looking for advice.

 I'm 27 years old and my mom and grandmother had breast cancer on their 30s. I've been having sharp pain on my left breast for 3 months now. I saw a physician assistant and she told me it was muscular. The pain continued, so I finally saw my PCP yesterday. She said my left breast is dense and lumpy. I'm having an ultrasound tomorrow and seeing a breast specialist the next day. Did anyone had a similar experience? I really don't know what to think of the situation.  I feel like even if they don't find anything I should ask for a biopsy due to my family history. Do you have any recommendations to what I should ask the BS? 

 Thanks!  

Thanks for your response! Did you ever find out why you had pain on your left breast?

Thank you Nanna!

I also think it's fibrocystic breasts but won't be okay with the diagnosis until they've done every test they can. Three different doctors told my mom she didn't need a biopsy but she did it anyway and of course it was cancer. So I know how important it is to advocate for myself!!

Thanks for your encouragement!! I'll keep you posted! 

That's great news Rosaa! 

My period is still a no show and tomorrow will make one year since my last chemo....and I've put off making an appt with the GYNO. I think I'm just sick of appointments. But I need to go. I have an appt with my oncologist and a mammogram next Tuesday.  

My hair is probably 2 inches long. It's very thin on the top/crown area. My sides and back are pretty good. I hate seeing my shiny scalp! I hope it starts to thicken soon. I'm wondering if the Tamoxifen has anything to do with it.- as well as my lack of periods...

I'll ask my onco on Tuesday and report back. I don't necessarily miss my period, but it would be nice to feel normal again. But you're right KK- after not having a period now for 16 months, I've saved a ton of money not having to buy pads or tampons.  

I had some foul moods through chemo. Personally, I think it's the lack of estrogen in the body. When my mom started going through menopause, she was a pill at times. Then she started taking hormonal therapy once a week and she is a different person. She says I was mean at times when I was taking chemo. 

So I spoke to my ONC and they said they are not worried that my period has not returned. The PA said to give it 18 months post chemo. And they said that tammy doesn't usually cause thin hair..but it can make your hair fall out. I haven't noticed any hair falling out. So they said that when my period returns, my hair should thicken up as well. I can't wait! 

Hey All! I had my margins surgery last Thursday, it went well.  Nothing visible, just waiting on pathology   Feeling pretty good.  I wasn't paying attention and I can actually raise my hand over my head (though apparently thats a no no for LE risk for a few weeks).  I go back on 6/12 to start rads simulation, though I am not sure if I am going to end up getting rads in TX. My son was playing while we packed the car before leavin my aunts house and dropped a wine bottle.  So with only 40 minutes to clean before leaving for our plane we did the best we could.  She is pretty Irate about all of it!  I did'nt leave a not that I had washed the hand towels we used so they were in the wash machine.  We didn't have time to put them in the dryer.  So I am not sure now if we are getting treatment in TX. Short term housing down there is pricing out close to 4k or more for the two months.  Yikes. 

Sorry for the venting, just stressed about the whole situation   Anyway, I am excited about my response, My scar is a little lower so less visible in the armpit of my clothes, even if it is a little longer.  And the stiches seeem to be keeping the seam closer than the staples last time.  I also only ended up with one drain, they ended up taking all my nodes  taht were left.  So more LE therapy for me.  Sorry for the up and down post, I am only on a "light weight" pain pill but I dohn't ever take pain meds so they all make me loopie  

Hope everything is well for all of you guys!  I should be done done with all my rads treatment August 3rd!

YAY Minimacs glad to hear the good news!!! Feeling kind of upset today, you would think after living in a place for 9yrs you would have made some friends, well today I found out I have had no such luck!! So wish I could move back closer to home,family and friends!! Oh well God will see me through this just as he does everything else!!

Thank you Minimacs and I pray things get better for yall also!! I got to spend time with my 2 best friends today so Im feeling a lot better then I was the other day!! Hope all are doing well...hugs for all!!

Hey Amanda...  We are on rads together, I started on monday for 30 treatments (we are shooting for 29 days though so I can go home early).  So far I am holding up well, I hope youa re too.  I agree, I kind of find it creepy  

My sister had  callback on her mammogram, apparently its common!  Doesn't always mean anything other than they are being super cautious!!

I had discharge out of my nipple, little tiny bits on the BC side 2 mo after I stopped nursing before I got DX.  But I have read that you can have discharge for a while normally.  She should be eligable for screening because of your situation even if she is not the right age.  My sister is only 30, but my BC got her insurane to cover an US and she ended up having 3 mammograms over 2 weeks.  She is fine.  Its better to be safe and get monitored!  Hugs, I hope you hold up well to rads.  My RO told me that the more fair skinned you are the better you hold up.  I am having 5 bolus treatments.  I have notice on bolus days my chest muscle is a little tighter, but so far thats my only SE.  Good lUCK!

I go to MDA as a second-now first opinion.  I went right after my first UMX.   I started all my chemo here and had my second surgery here.  They make a really really great argument for getting treatments done here! 

I saw the RO in may and he was very convincing, again, for doing rads here.  I have a few friends from IL and KY who work for ROs and when I told them the rational, they totally agreed it was worth going.  You basically get 8 ROs all 8 BC RO review your BC rads plan.  Also, they don't do permanent tatoos and they still do two simulations a CT one and an Xray one.  Some hospitals have cut it back to one simulation.  Aside from not liking rads, I feel very comfortable that they are minimizing scatter and overshooting as much as possible.

Its pretty funny, I just hate when they start to fall off and the techs get that Ugh look.  I was on machine 5 at first and LOVED the techs! I have since been switched to machine two because I wanted mornings and they just aren'[t as happy and social.  I have more than a square, if they were all connected and not just the cross hatches then its like a square with 3 lines drawn vertically through the middle.  I have number 7 today and my 3rd of 5 bolus yesterday.  Those are the worst days so far, the bolus makes my skin so much tighter so much faster.  Also, my skin is starting to darken, not redden but get more tannish in my funky square   I can't say I like it but hey...  The lil man is also kind of difficult, he likkes to pick at the sticker too.  I get my x-rays today so I am hoping they will take most of them off and replace them.  I have some that are just barely hangin on.  Are you using anything on your skin yet?  I am not allowed to for the first two weeks, but I have some "my girls cream" on order.  Its approved by mo RO and one of the other women in the waiting room recommended it.  Her RO said that it looked like her skin was already starting to heal and she still had a week or two of treatments to go! 

Happily though, Debbie isnt headed our way anymore so I don't have to worry about that as a delay anymroe

Hi ladies. I'm sorry it's been a few months since my last post. I guess I'm just settling back into "life" again. July 4th marked 9 months since my last chemo. I've been back to work full time since the beginning of April, so for a while, I was putting all my energy into work. I almost left my job for a different one, but my current boss was able to match the offer at the last minute, so I stayed put. She has been really good to me throughout all of my treatments/surgeries, so I am happy to stay where I am.

Around mid-May, I decided to start running. I've always been active, but never much of a runner. I couldn't do much at first, but my longest run just this last week was 3.2 miles (my first 5k since probably high school). It feels good to be out there running! I have noticed my neuropathy (which I thought was gone) has creeped back since I started exercising so much. And I do sometimes feel a bit tight/sore in my affected arm, so I need to watch for lymphedema. But I have found that exercise really does help with fatigue. I still don't feel like I'm 100% at times, but there are times that I feel so good that I forget what I've gone through, which gives me hope.

So overall I am doing well. I had a follow-up with my fertility specialist (he likes to see me every 3-4 months to see how things are going) today. I got my period back in January and am on cycle 7 (they have ranged from 20-32 days). He found a couple of cysts on my ovaries on ultrasound but said it was normal for people on Tamoxifen to have cysts. He's doing some research now on young cancer patients who are taking Tamoxifen and the affect on their fertility. Data collection is through this year. We are looking towards October 2013 for me to take a break from Tamoxifen to try to have a baby. 

Mary Ann - I'm sorry you haven't gotten your period back yet. My fertility specialist said again today that getting it back within 12 months is key (it does happen after 12 months, but he said it comes with a higher risk of fertility issues), so I would highly recommend seeing a gynecologist or a fertility specialist to get an idea of where things stand. I don't think oncologists are the best to answer fertility related questions since that's not really their area. Where are you located? I hope you do get your cycles backor have gotten it back since your last post.

Everyone else - I'll come back soon to reply to some of your other posts, but I'm happy to see that some of you are finished with chemo now! It takes time after chemo, but you do start to feel "normal" again, or at least a "new normal". I'll make sure to post a pic of my short hair do (my 9 month picture). I'd say the longest hairs are about 3 inches now, but it's pretty curly on top and in the back, so it looks shorter. My husband helped me learn to use gel/mousse to style it better. Mousse/gel with hair this short is a MUST! I've been getting a lot of compliments on it and I've always had longer hair, so this is kind of new to me