Calling all ladies in their 20's

kk11

Hello ladies. I'm new to this site. I was diagnosed just 2 months ago and I'm 28 years old. I had a single mastectomy with reconstruction 2 1/2 weeks ago and will be starting chemo in the next few weeks. Fortunately the lymph nodes they removed during surgery were negative. 

A little history on me....My husband and I decided to have a baby at the start of 2010 and were pregnant in early July. We miscarried in mid August due to a partial molar pregnancy. I ended up needing chemo for that, so I had about 2 1/2 months of chemo that finished in mid-February. I was told to wait 6 months to try again. 2 months into my wait, I found a lump in my breast and from there I'm sure it's a familiar story for the rest of you since you've all gone through this diagnosis.

One of the hardest things is being put on hold again. We fortunately were able to freeze 9 embryos on one IVF cycle before my surgery, but I can't imagine waiting 5 years through tamoxifen to have our first child. My husband is 32 now and I will be 29 later this year. I know I need to focus on my health first, but I guess I'm looking for support through this since it seems like everyone else around me is having babies and it just makes it hurt that much more. I realize I should be incredibly grateful that I caught this at Stage 2A (I know some of you here are Stage 4 which breaks my heart), though I'm also a bit bitter about the fact that a Chest CT scan back in November (for my molar pregnancy - they were looking for signs of spread then) showed the breast cancer and the radiologist missed it. I would have been a Stage 1.

Sorry to go on about me. I have been reading through some of your posts and you are amazing women. I hope to get to know you better. One thing I learned from my molar pregnancy experience is that being around others who get what I'm going through is invaluable.

Melanie_Ann

Hi KK! Welcome to the group.

I just wanted to say welcome and that yes, you'll find similarities in what we're all going through but also differences as well. I'm 26 and have never been married. I also find it hard to believe that I'm going to have to wait so long to ever have children. Although, since I'm not married, I don't really think about it too often b/c I wouldn't want to have one without being married. But then I also have thoughts on, who would want to marry me if I can't have children...and so on and so on. I ended up not freezing any eggs b/c I didn't like the statistics. So now, I just hope that one day I will be able to. 

I'm so sorry that you have to do chemo again. I just finished up mine a month ago. I'm still feeling the SE's, but they're getting better every day. I start radiation next week and will have 33 treatments. Then I'm also on to Tamoxifen for 5 years. 

Melanie_Ann

Oh and I wanted to say, I know how you feel about the babies everywhere! Within the past year my brother, a few cousins, and friends have all had babies. I love them all, but it is hard to be here, when you'd so much rather be in their shoes.

kk11

Hi Melanie_Ann - Thanks for replying. It must be a good feeling to be done with chemo though I know that this experience changes you and I imagine there is never 100% relief. I hope the radiation treatments aren't too painful/uncomfortable and that you can move on with the Tamoxifen soon. Each day is a day closer to being done with treatment. 

As for being single vs married and dealing with cancer, I guess there are downsides to both. My husband and I were trying for a baby and sidetracked due to the molar pregnancy and now put on long-term hold with the cancer, but I do still have my husband. And I have far fewer concerns about body image with the mastectomy than some of the single women I know who have gone through it. I can see how you'd be concerned with hoping to marry someone while not knowing if you'll be able to have kids. There are of course no guarantees (even without cancer), but this just adds another element of worry. I hope this doesn't get in the way of you finding happiness with someone. 

I should be starting chemo the week after next. I'm waiting to hear back from my oncologist's office for appointment times. In the meantime, I'm at home on disability and trying to enjoy the extra time I'm getting with my husband who works from home. He's been such a wonderful support and cooks and cleans so I don't have to do as much. I know I'm extremely lucky to have him. 

PixiePink

I am 24, was diagnosed at 23....hoping I can talk to some of you privately to ask concerns and questions....To me, it's played more on me mentally and emotionally than anything. I never sleep at night. I have terrible mood swings and fear so bad that I will not be here to watch my two children grow up. I'm TERRIFIED of dying early, because I don't want my babies to be without me!!!!

NannaBaby

Welcome KK and PIXIE PINK!  We have wonderful young ladies here who would love to answer your questions/concerns   We r great support for each other! 

PIXIE PINK - feel free to private message me if you'd like   I'm sure any of the ladies would love to hear from you!

I can't believe it's almost been a year since I posted this thread!  I have lost track on how many young ladies have posted here.  It's shocking to c how many young women r diagnosed! 

texasrose361

Welcome KK and Pixie

KK- Is there any way you can do the pregnancy before tamoxofen because of being 2a?  Glad to hear your husband is very helpful and sorry to hear about the miscarriage, i know how hard they are to go through.

Pixie- Feel free to PM me anytime I share many of the same fears as you.

Melanie_Ann

I'm 27 today! Here's to many more birthdays!

NannaBaby

Happy Birthday Melanie Ann! 

TreadSoftly

Happy Birthday Melanie Ann!  Enjoy celebrating!

Nanna - cant believe your friends acted the way they did, grrrr!  Some of my friends have been acting 'strangely' since my diagnosis too - defo distancing themselves and less phone calls etc, even now and Im over a year post treatment etc!!  I wonder why - do they think we have 'changed' in some way post-diagnosis?? Love your new puppy - he looks so cute!!

Welcome KK & PixiePink!

Melanie_Ann

Thanks ladies!

That is one cute puppy! I wanted a puppy a few months ago, but realized I probably couldn't deal with it. So maybe I can get one after radiation, when I feel more capable of taking care of another living thing!

kk11

Welcome PixiePink. Are you done with treatment now? Are you seeking help for your trouble sleeping? I know where I'm going for treatment, they have a study for sleep issues for breast cancer patients, so it's definitely not uncommon. When I went through chemo for my molar pregnancy, it wasn't until after I was done that I had sleep issues, but they fortunately didn't last too long. I did some research then and a lot of people who get various kinds of chemo for various illnesses have this problem. Hope yours improves.

Melanie_Ann - Happy belated birthday to you! We are all rooting for many many more! As for getting a puppy, I think you should definitely do it if you want to! You're already proving to be a great candidate by recognizing when would be the best time to give them the care they deserve.

Timothea - I don't know if they'll let me do the baby first. My oncologist is pretty conservative. He wants me on for 5 straight years and I did tell him I'd be interested in taking a break after 2, but he doesn't like the idea. I had another oncologist say it would probably be okay to take a break after 2 years and then get right back on. I don't want to compromise my health, but I also don't want to wait 5 years. It's a sucky situation. I did find an article (I think on this website) where there was a study that showed that Tamoxifen is only effective on ER+ or PR+ tumors that are of the "active" kind vs "inactive". I don't fully understand it but I'm going to bring it to my oncologist next week and see what he says. 

 Nannababy - I have learned through the molar pregnancy and breast cancer diagnoses in the last year who my true friends are. It's awful that people don't want to come celebrate with you. Not sure what their reasons are, but I think part of the isolation is due to the fact that they just can't relate. Some people are afraid of saying the wrong thing and others just don't get it all so they only say the wrong things. That's why it's so good that we can come here and have others who CAN relate.

I'm still getting to know all of you, so I hope I didn't miss anyone. As for me, I have an appointment scheduled with my oncologist for next Thursday and I'll start chemo the following week (hoping to make it Monday). My husband took me to the beach yesterday to get out and it was nice (but a bit cold so we huddled under blankets). My SIL took me shopping today. I didn't feel like trying on clothes since my surgery was just 3 weeks ago, but I watched her pick out a few cute bathing suits and then I picked up a pair of shoes for myself (had a gift card). Tomorrow I'm going to San Francisco with my husband and his parents and next week we're driving about 5 hours south to LA for a wedding. I'm off work at least through July 24th, so before I start chemo, I'm trying to enjoy the days when my mind is still clear. The last time I had chemo I was constantly in a fog. 

DanaDono

Hello Ladies, I am 29 years old and diagnosed at 27...I have finished surgeries/treatments just at the beginning of this year and finally on my way back to the world! I just now am checking out this website for the first time, I couldn't bring myself to research anything until I knew I was going to be "ok"...I know thats horrible but a way that I was dealing with it all...I got a dbl mast and having a horrible time finding bras...any advice? I dont want to buy an "old lady" wardrobe just because I cant find a bra to support my "new/fake" boobs! haha

 Cant wait to chat with you all! XOXO

kk11

Dana - Where are you located? I found a website that talks about bras after breast cancer treatment. There is a link in that website for a company that specializes in bras, lingerie, and swimwear for breast cancer patients. I'm not ready to go there yet (just had surgery 3 weeks ago and still getting expansions), but it might be worth a look for you. I'm sure there are other brands/companies that do the same thing but this is the first one I've found so far.

http://www.thebreastcaresite.com/tbcs/QualityOfLife/ProductsForYou/GettingAGoodFit.htm

WarriorPrincess24

OK ladies...I'm freaking out over here:



I finished A/C, Taxol about 9 wks ago and have been in chemopause since January. I've been anticipating being w/o my monthly visitor for a few months but this morning I had a little spotting. Which would be fine and well but I tend to be a worse case scenario thinker (I know, not the best way to be..) But now I'm thinking back to the last few trips to Atlanta when I was able to " spend time" with my dear bf and we used protection...but my extra comfort came in knowing that I was in chemo pause. But now I have all these other thoughts running through my head. I.e. 99% effectiveness of condoms...etc.



I guess I say all that to say this: Have any of you gotten your periods back so soon and are my baby concerns legitimate or just my paranoia. I mean, I was there this time LAST week. I just want expecting to deal with periods/spotting for another few months. Wtf!?

texasrose361

Happy belated bday mealine!

KK- hopefully its so hard to say, eahc dr has their own set opinions, i have also read people putting tamox on hold for a baby.

Dana- welcome btw COOL avatar. No sadly i havent found any bras (that arent old ladyish!), i also had a bilat mx and i wouldnt say my wardrobe is old ladyish but then i dont wear my foobies ever.... I have a few high neckline tops that are backless which are super cute and cool for summer

NannaBaby

Warrior Princess - Your worries are probably more common than you think!  I had some scares a couple times!  I spotted while I was doing chemo and freaked out!  I tried the today sponge and don't think I left it in long enough... so I ask my oncologist if I should worry about prego test?  He didn't seem concerned.  He said spotting is possible, and it can happen anytime, because I have no "schedule" anymore.  But, if you are worried about it, it doesn't hurt to get tested

bimmer2011

Hey Ladies - just wanted to drop in and say hi because it has been awhile!  Also I am feeling very frustrated right now and since noone else seems to understand what I am going through I thought I could to turn you gals for a little support!

My frustration is stemming my from slow healing incision.  After my staples were removed my incision opened in two spots and eventually almost fully reopened and it just feels like it is taking forever to heal.  The nurses who change my packing dont seem to understand the urgency in healing this - as I cant have radiation until it is fully healed!!!  They all just tell me that it takes time and i just have to wait.  I know the healing has come along way because the once 9 cm opening is now down to a 1 cm opening but that 1 cm just doesnt want to seem to heal and it is driving me crazy!!!!!

I have an appointment to see my rad onc tomorrow and he will decide if I can still go through with the simulation tomorrw to get the markings.  I just want to start radiation and finally finish all the treatment. 

All of this is scaring me as well because the rad onc said they like to start radiation within 3 months of surgery and I am almost hitting that mark and my incision still isnt healed.  I just feel like my body is fighting me and it is soooooo frustrating!! 

Thanks for listening to me rant - I have just been sitting on my couch pretty much crying the day away and it feels good to get this off my chest!!!

Melanie_Ann

That does sound frustrating! I'm so sorry it hasn't healed yet! I would feel the same way if my treatment was delayed. I pray that the RO lets you go ahead with treatment. I started radiation today. It was a little strange but not too bad.

kk11

Warrior Princess - I haven't experience chemo pause before (the last chemo treatment I received didn't affect my cycles, but the one coming up will), so I have no advice to give. But I hope you get some answers.

Bimmer - I won't be getting radiation, but I think any delay in treatment would be frustrating. I hope the radiation oncologist will tell you it's okay to proceed with the radiation so you can complete all your treatments.

Melanie_Ann - I'm glad your first radiation treatment wasn't too bad and hopefully it stays this way through the end.

Nothing new to report with me, just trying to get some things done before chemo starts and wipes me out.

LibraryJenn

Bimmer - I get it.  My incision burst open in January and I'm still getting it packed - however the difference being that I already had radiation to the area so it heals even more slowly.  My surgeon guessed six months, and it's been just over five.  I was going to suggest meeting with your rad onc. anyway, so I'm glad that is what you are doing.  Did they allow you to get fitted for a fake boob yet?  They won't let me until it's completely healed and I still have a small area tunnelling under that still gets packed.

Warrior - my period came back that early too - I wasn't expecting it at all.

Happy Belated Birthday Melanie Ann! 

So here is my crappy news; my chemo isn't working  The cancer has continued to spread to other lymphnodes in my neck and is growing in my liver and expanding in my lungs.  I'm now on almost total bed rest.  I rarely go anywhere besides the bed or the living room, and I'm always sitting or lying down as I get short of breath doing something as simple as standing.  I found out about chemo not working on Friday after my Thursday CT Scan, but my onc. was off that day, so he found out today.  I have an appt. with him tomorrow morning, so it will be interesting to find out what the next plan of attack is.. f***ing disease.

kk11

Jenn - I'm pretty new to this site, so I don't know much of your history except what's posted in your signature. It makes me sad and angry anytime I see that someone going through what you're having to deal with. Hopefully there is another chemo drug they can use to knock the crap out of this sucker. You're in my prayers.

DanaDono

Jenn, are you on herceptin? Stay strong, you can beat this...have you focused on your diet? And alternative options to your care? Diet especially? I am reading this amazing book, Anti Cancer...it is a lot of information, but what I would suggest to you immediately is begin eatting EVERYTHING organic/natural...loading up on veggies & fruits, and ONLY eat meat that is grass fed and rich and Omega 3's. There is a  lot of information for this in the book, our meat in our current diets have shifted from Omega 3 (our bodies cannot generate) to Omega 6 (which are inflammatory and can trigger cancers), we can only get these thru proteins...I am not a specialist and only learning what I read, which is overwhelming, but my Dr told me my cancer was "environmental" so I am trying everything I can do control it going forward. Let me know if you need some more pointers, I can email you....your in my thoughts.

kk11

Hi ladies. I got my final hormone receptor information from the pathology report. My biopsy had showed me weakly positive for estrogen at 40% and PR and HER 2 negtive. The pathology following my surgery is showing that it's now weakly positive for estrogen at 10% and still PR & HER2 negative.

I believe my oncologist will still want me to be on Tamoxifen after chemo (I see him tomorrow), but I read that the lower the % for estrogen receptors, the lower the chance that the Tamoxifen will be effective. Do you know anything about this? My husband and I really wanted to try for a baby so I don't want to be on something for 5 years if it's not likely to be effective. I'd be okay with it if I could take a break after 2 years to have a baby. 

Thanks in advance for any advice you have on what to say to my oncologist or what questions I should ask.

NannaBaby

 I'm so sorry to hear the bad news JENN   When do you find out the new plan?  You can get thru this! Keep your spirits high and strong! Get all the rest you need!  Big hugs to you, your son and family! You are in my prayers Canadian sister!

bimmer2011

Thank you for the support ladies!  I have to say at the start of my appt on tues things were not looking good with moving ahead for the rad prep/markings b/c my incision was still slightly open but after the dr. took a look at it he fealt comfortable with me going for the prep andn I was soooooo happy!!!  So I have the markings and just got a call that I start rads next thurs assuming that my incision is fully closed   So here's hoping for more healing.

Melanie Anne - I just wanted to say happy belated birthday!  I hope you had an amazing day and that there are many more to come.

Pixie - I just wanted to let you know that you are not alone.  I have found from the very beginning that dealing with this whole thing mentally has been MUCH harder than anything physical.  I find that the physical aspects of the cancer are well taken care of/managed by our dr's but I think they really lack the tools to help us mentally.  I currently do not take any mood enhancing drugs and I also have not talked to a professional therapist - although many times I think I should talk to someone.  I did try and talk to someone once but I felt that she really didnt understand where I was coming from because she has never experienced having cancer - so I was really put off.  She was also providing me with coping techniques that I found very annoying ie. she told me that before going to sleep i should picture myself locking my worries in a trunk or putting them in a closet or putting them in a boat and sending them down a river. Although I do believe in positive thinking I found that this did not work for me.  Of the things I have tried I can honestly say that this site and thread has helped me tremendously because everyone here understands what you are going through ad although none are professional therapists (that I know of) they can give advice and support just as good or better!!!

Jen - I am so sad to hear that your treatment is not working.  I am sending all my love and positive thoughts to you and your family that your new plan will work better and that you will start to feel better!!!!  I can't believe that you are still getting your incision packed and that it is still not fully healed after 5 months.  It is so damn frustrating when you ca't do anythig to make it go faster and how slow the process is when healing from the inside out

Nanna - Your puppy is adorable!!! 

Everyone else - I hope that you guys are enjoying the start of summer and that things are going well!

. 

kk11

Bimmer - I agree that being around others really helps. I don't know what a therapist who may never have experienced cancer would ever be able to offer me that's better than what the rest of you could. That's not to say that others couldn't benefit from counseling. I just don't know if I would and think I'm doing okay so far. I did also find a local support group for young women with breast cancer which meets twice a month and that gives me the face to face contact, kind of like group therapy would. If you can find one of those, it might help.

As for me, I had my appointment with my oncologist today. I'll start dose dense AC next Tuesday right after they put a port in. I wasn't in favor of the port at first, but they're going to put it out of sight so scars aren't visible and my vein on the left side (can't use the right anymore since surgery) is not quite as vibrant as it used to be (probably due to the 6 months of weekly blood draws from my molar pregnancy).  I have my 4th expansion on Monday and then I'll switch to every other week until they're done, though I probably only need 1 more after Monday anyways. 

kk11

Jenn - How did your appointment go on Tuesday?

LibraryJenn

Hey Ladies, thanks for all the support!  My appt. on Tuesday was interesting.  The last chemo Navelbine, definitely wasn't working as the tumors in my liver have about doubled in size.  We're talking bigger than grapefruits here.  No wonder I needed to up my pain meds.  My lungs are also shot, however I could tell that just by how much I gasp for breath after getting up and walking around.  I started a new chemo (can't remember what it's called at the moment) but it's an oral chemo.  I also got switched to Tykerb which is a cousin to Herceptin and will be taking it instead of Herceptin.  It's also an oral med.  At first it made me really nauseous but I found an order of anti-nausea meds that work when I use them.  A combo of three different ones, but whatever. If I'm not throwing up, I'll do it.  My onc. didn't mention timeframe/prognosis and I didn't ask.  I think I'd rather not know.

I also went and saw a naturopath doc. on Tuesday.  He also believes that the cancer is in part to a drug that I took for Crohn's disease that lowered my immune system beyond it's abillity to fight the cancer cells.  Shitty deal.  He has me taking drops that I add to my water bottle that are supposed to help restart my immune system so it recognizes and kills cancer cells.  I'm not sure what all is in the drops but when I drink it I breathe better, so I'll stick to it.

I actually feel better these past few days and have more energy than I've had in over a month, so let's hope it's the chemo/naturopath medicine kicking some cancer ass!

skline6381

My daughter is triple negative with non genetic mutated Stage 3b.  She is 25 yrs old and has had 4 rounds of A &C and 3 rounds of taxol, she was non responsive to chemo.  She had a bialateral mastectomy on March 9th and then 23 rounds of radiation and now is participating in a clinical trial at Seidman Cancer Center in Cleveland. Her last PET SCAN showed NED and is cancer free.  I registered as her as she does not do blogs.  This is a long journey for her and she will have to do this trial for at least 24 weeks and then start reconstruction.  I am glad to find someone else in there 20's.