Calling all ladies in their 20's

Hi NannaBaby-

It doesn't seem fair, does it?  This isn't supposed to happen to us before we've gotten married, had kids, etc.  I feel I can only relate to you partially because I never had to go through chemo or radiation, but I did have bilateral MX in April 2010, 1 week after my 29th birthday.  I felt my first breast tumor when I was 26, and was told by my gynecologist that I just had fibrocystic breasts.  Finally at 27, I had lumpectomies and found out that I had two phyllodes tumors, which are super rare, apparently <1% of all breast tumors.  Anyway, over the subsequent 2 years, more lumps appeared and just kept growing.  All of the ultrasounds and biospies always came back looking benign, but after a year and a half they just kept growing and growing until finally my oncologist recommended MX because there were too many (like 15-20 per side!) to biopsy them all and we were worried about the risk of more phyllodes.  After surgery I found out that all of the tumors were benign, I was lucky. 

I also hope to someday have children but am worried about even finding a husband first, especially now that my breasts have scars and currently feel pretty bizarre (I have tissue expanders right now).

I do have to say that in the aftermath of the surgery, now that I'm through the pain of recovery, that I am relieved to have had the mastectomy.  No more worrying that the lumpectomy left tumor cells, no more sore breasts from all of the 30-something tumors I had remaining.  I got to keep one nipple- before the surgery I didn't think losing my nipples would be that big of a deal, but afterwards I felt like it was a saving grace that I still had one nipple...it made me feel a little more whole, I suppose.  My surgery was about 10 weeks ago, and now I look completely normal with clothes on.  I even look fine in a bra or bathing suit.

I hope you don't have to lose your breast, but if you do, they really can make you a new one that looks a lot better than I expected.  Especially if you can have a nipple-sparing MX.  If you find out you have to have MX, you should look at some MX/reconstruction photos- ask you PS, or look at http://www.breastreconstruction.org/ for helpful info and photos.  It will make you feel a lot better. 

Good luck with your treatment, I hope you can just have the lumpectomy!

--Becky

Hi NannaBaby,

I'm 29 now, and was diagnosed last summer when I was 28.  Your concerns and the others echoed above hit me, too.

I'm married, but no kids yet.  Like TreadSoftly, I'm on Tamoxifen for five years, so no chance for kids until I hit 34.  My period hasn't come back yet, though...who'd have ever thought I'd be jealous of something like that?  :-)  I'm definitely open to adoption if we're not able to have biological children.  It was always something I was interested in, but I know that it's often difficult to arrange for an adoption as a cancer survivor, so I guess I'll worry about it when we get to that stage.  I do feel bad that I'll never be able to breast-feed, however.

I had a bilateral mastectomy, but delayed reconstruction (since they found a positive lymph node during the surgery).  The first couple days after each surgery were unpleasant, but still manageable.  My husband's always been a boob guy, so while his main concern has been my overall health, I think he also misses the original sweater puppies.  I had a lat flap with TEs in June, then I'll switch them out for the permanent implants in October.  Until then, even though the shape is right, I think he's afraid to crush them (we call them my "front-lumps").  He got a little faint when the doctor was talking about squishing under the implant to do a breast exam in the future.

I didn't find chemo too awful.  The worst part was probably the Neupogen shots I took to help my white cells rebound in between treatments (I did the cycles every two weeks, looks like the same drugs as you're taking).  It took a while for my hair to grow back, but now I'm rocking a short little pixie cut!

Anyway, please feel free to PM me if you have any questions.  

Hello,

Yes, I completely understand where you're coming from with those fears/thoughts. I was 26 when I was diagnosed, and had a bilateral mastectomy 2 days after my 27th birthday. I'm currently going through chemo now (ACT) but I only have 1 infusion left. Then I'll go onto radiation, followed by the reconstruction surgery. I have tissue expanders in now, and yes, they definitely feel weird, and am looking forward to getting my new set of "boobs"! Anyone else go/going bigger than they were before?

It sucks having to wonder if I'll be able to have kids. I'm frightened that I won't be able to. Egg freezing was out of the question for me - it was too expensive and it would be less costly had I had a partner to freeze embryos with, but I was single.

Even now, I sometimes start thinking I feel less of a woman without breasts, without hair...I try not to let myself dwell on it too much, and just think that it could be so much worse.

Anyway, I'm new to these boards and it's really nice to see other women my age going through the same thing. Good luck with everything coming up! Feel free to message if you want to talk or have any questions. 

I have a similar situation to doodlebug423 in that I was diagnosed last year with fibrocystic breasts. I was 20 when I found my first lump and immediately went to the doctor (March 2009). That was classified by biopsy as a fibroadenoma and luckily went away. The following year I found a lump in my other breast and went through the same procedures. The biopsy showed that it was another fibroadenoma and a surgery date was set. I had surgery July 19th 2010 and am healing well. I got a shock when I went for my post op appointment yesterday and was told that the tumor that was removed was a rare phyllodes tumor. I'm lucky that mine is benign, but was told I might have to have another surgery.

 From what I understand now, doctors are meeting later this week to discuss my case and come up with a plan for me. Given that I was diagnosed yesterday, I haven't done much research on my diagnosis and am a little scared to do so. It's obviously a scary situation to go through and my family seems to be taking it harder than I am. I think I'm still in shock that this is going on, but I feel lucky that the tumor (although maybe not all of it) has been removed. If the next step is surgery I'll gladly go through that again. I recently turned 21, never smoked, nor have I ever drank. I've lived my life as healthy as I could with no family history of breast cancer. My mom is extremely upset and I agree when she tells me a 21 year old shouldn't have to go through this. I don't know if I should tell my friends or just deal with it between myself, boyfriend, and family (whom all are extremely supportive). Meanwhile, I'm a junior at ODU in Norfolk, VA and am just trying to juggle the stress of everything. As I've read with other posts, waiting seems to be the hardest part and I agree (even though I've been one day into my diagnosis). 

I continue to try and stay positive.

it is hard breaking the news to family. i still havent told my mom and step dad because he just got through his own cancer and emotionally they're not ready. but for my husbands family we did a get together and let everyone know what was going on and told them we really could use their emotional support. Good luck! We're here for ya! I couldn't imagine being any younger than myself going through this... Get a good support network for yourself, don't stress the small stuff either

AWESOME! so excited for you- yeah i dont know if i could live in south texas without the ablity to swim (or even bathe for that matter cuz its so sweaty here!)

Let us know how everything goes!

Mel - I went swimming regularly throughout chemo. 

Pre-chemo, I used to wear a fairly loose cloth cap (as I had really thick hair half-way down my back).  I changed over to a much tighter swim-cap when my hair fell out. I got changed in the cubicle, swam, had my shower with cap on, then removed it again in the cubicle, put on wig, and left.  I never had any awkward moments!  I even went swimming during days 8 - 12 when I knew my blood counts were in my boots, and luckily no problems at all! 

Swimming defo kept my fitness levels up and definitely helped keep my arm flexible after my sentinel node surgery

Diane - good luck with your MRI!  

hello ladies! thank you for the welcome.

i talked to my dr today and he said that they will most likely grow back but because they were the last thing to fall out they will most likely be the last thing to come back in. my eyebrows thinned and are coming back but my eyelashes i actually lost some .. they are very sparse now so i hope they come back soon. its kinda upsetting! but i can deal with it.

 Diane - I am so glad your MRI had good results!! and that they chemo is working!! WOO HOO! yes it is a bit harder to relate to the older women and the looks of pity are a little annoying but oh well. actually I was in Ikea today with my husband and daughter and parents and an older woman came up to see the baby (she smiles at EVERYONE!) and she told me that I looked like a "classy" lady with my scarf on my head haha.. it made me feel good. she said its not easy for everyone to wear just scarfs and good for me.. lol made my day a little!

 Diane, I was also put on taxotere, I, personally didn't handle it well but not everyone does. It was muchhhh easier then the FEC they had me on. The side effects I had were bone pain and my blood cell levels went down quite a bit but no permanent baldness. I don't want to freak you out  but my nails started coming off a month after I was done chemo. The new nails just pushed the old nails out so it wasn't too bad. I hope it doesn't happen to you

At the doctors appointment today, they told me there was no need for a mastectomy in my future and they were thinking that a ovorectomy might be necessary but now he is saying he wants to wait until I am 35 so I don't start osteo too early. Which means I might be able to keep having children- if my period ever comes back

Anyways the appointment made me feel better, he said to just get the radiation over with and then live my life without trying to think about the cancer coming back. I'm gonna try!

 Alicia

Hi all, quick question: is Taxol the same thing as Taxotere?

Blossom: I had a double mastectomy this past March. Tissue expanders were put in and every week or couple weeks I would go to get them "filled" with saline. So they would get bigger every time, which was nice You generally have to wait until after chemo is over with before reconstruction can start. Unfortunately, after my path came back, they said I needed radiation. So I have 6.5 wks of radiation coming up, and then I have to wait 6 months for my skin to heal before I get my new boobs. There's another kind of surgery too, where they take part of your own tissue and "build" new breasts- but I'm not very familiar with that process. But, best wishes and good luck with everything - you've found a great forum to chat in! 

Nannababy- I am also on Taxotere. I started in July 30th after 3 rounds of FEC. I found it easier but I had muscle and joint pain (from Nulesta shot) and it sort of felt like I had the flu for a couple days. My nails have still been okay and I am also hoping I don't have permanant hair loss. I was suppose to go today for my second last round of chemo but I developed a fever and ended up in emergency on Wednesday, turns out I just had the flu. I hope everything goes well with you and taxotere, keep me updated.

blossom- I am so sorry to here of your news. How did they find out  if you dont mind me asking? did you have a mestectomy? chemo? radiation?

Alicia- Eye lashes as well as eye brows have a slower growth pattern thats why they are slower to grow back. (and usaully take longer to fall out) Normal people lose about 100 hairs a day from their heads, very few if any on a daily basis on their eye lashes...  right now my head hair is dang near gone, my "downtown" hair also is falling out (i am well trimmed though so no biggie) and my leg hair is only growing in spots) eyebrows are slightly thinned- but not where its noticable. I only have done 1 rd of chemo, monday is rd 2

Diane- I am so happy to hear that you have some shrinkage! (the good kind lol) WAIT PERMANENT BALDNESS ON TAXOTERE? (thats what i am on as well as herceptin)... Um yeah i think we're so young it's bound to grow back eventually!

Mel- Good luck with the Radiation... you'll have your new boobs soon enough!

Blossom- No worries i dont understand much what the drs are telling me either...  With me the after chemo it was about day 4 or so that i felt tired, i just force myself out of bed (i have 2 kids so thats a must) and fight through it- i do nap when hubby is home and when ever i can get a little rest... i did find out that the more i napped the more tired i became! On day 16 after chemo (i am on a 21 day cycle) i actually took a mile walk! Pushed the double stroller and everything!

blossom- my head feelsso cool i wish i would have shaved it off earlier in this 105+ degree heat! lol

Welcome Mel-

I am glad you've found this younger young thread, It sounds like you've got everything worked out for the furutre (at least down on paper) I wish you the best of luck and yay for your period!!!