New to breast cancer looking fo

L421

Hello girls! Sorry so long!!!!!!! I'm 29 years old married for five years (have been together) for almost 10. we don't have any children (2 furbabies) we were however planing to start trying when I discover the lump on my right breast in the 8oclock position....I'll admitt I've never been up to date on Doc apts but I preformed self exams regularly because I had dense lumpy breast and was always aware of changes. When I found this lump in mid April I gave it a week to rule out hormonal changes. When it didn't go away I made an apt with obgyn who said probably just a cyst. She did an ultra sound in office and just to be on the safe side sent me to the hospital for further imaging. after the mammogram on my right breast I was told to wait, which I felt unusual as all the other women were coming and goinging. I was then told that they also wanted to mammo the left.... Ok whatever. Again I was told to wait.... Very nervous by this point. The radiologist, whom I happen to know came out and said he wanted another ultra sound. I asked if its ok and again told probably a cyst. After all that I was told I'd receive a call in a few days. Much to my surprise I was called that afternoon and referred to breast surgeon. At this point I'm terrified!!!! No family history of breast or any other types of cancer. The bs was very nice, I was lucky in that I also knew him (my family is involved with medical community) he scheduled me for a stereostatic core biopsy on both the initial lump on the right and then another suspicious area on left. A few days later my husband I got the devastating news. I had IDC in my right breast... Left was thankfully benign. Due to urging by others I decided to get a 2nd opinion from a large teaching hospital. They concluded the same and I decided whatever I do I'm doing at home. I realize teaching hospitals serve a great purpose but I wanted to be home with doctors I knew. So then decision time..... After much consideration I decided on a bilateral mastectomy with immediate recontruction using tissue expanders. I went this route not only for peace of mind but to also perhaps avoid radiation and better cosmetic result (yes very vain I'm ashamed to say). Surgery was July 26, stayed 2 nights in the hospital and felt ok in general. Difficulty sleeping of course and the tubes OMG so annoying!!!!!! Had 5 of them...dh was so helpful draining them, getting meds, and catering to me. About 2 weeks later I saw my PS, another great man, who said that I had developed necrosis of the incisions ??????? Ugggg...more surgery. Happy to say that one went well although he did have to remove the saline he had fill during initial surgery to I had to start over with fill ....150 cc so far and going strong. I've maintained a pretty positive attitude through all this up until last week....meeting with the oncologist. He revealed that my tumor measured 3.2 cm grade 2 (much larger than anticipated) but my nodes were clear hooray!!!!! I'm ER+ %90 and PR+%97 Her2- Also brca 1&2 -. Hear all this I thought awesome I'm a perfect candidate for hormonal therapy and won't need chemo. Unfortunately my oncologist disagreed. He had presented my case to a board specialists from around the country that agreed due to evidence of vascular invasion found in the breast tissue, along with my age the size and grade of my tumor that I should receive chemo. Once again devastation. I cried in his office, the whole way home, and for hours after. Dh finally had to give me and Ativan to calm me down.

sorry wasn't finished. He prescribed taxol once a week for 12 weeks followed by 4 rounds of CEF once every 3 weeks. I will then be on tamoxifen for 5 years. This has shattered our dreams of starting a family. My husband and I are at a complete loss....I suppose I should feel good for finding it before it had progressed further but I'm still angry as hell. I don't really know what to ask y'all or what I expect y'all to say, I just wanted to share my story and feeling with other people who have or are going through the same things. Thank you for your time and any comments, tips, suggestions. Much love and happy healing to you all!
-L

momof3boys

I'm sorry you're going thru this, especially so young! Have you had the Oncotype testing done on your tumor? That will give you an indication of whether chemo will be effective and your recurrence rate. Being so young and having a tumor over 2 cm, with vascular invasion, I'm thinking most MO's would want you to do chemo.

I'm older than you (44, was 43 when diagnosed) and heard that my age was considered young and although I had no nodes, no LVI, and a low Oncotype score, my mo wanted me to do chemo because I was young and tumor was over 2cm...I did 4x TC. It wasn't a picnic, but I'm very very glad I did it. You can do this....stay strong

L421

Thank you for your reply momof3 I did ask about the oncotypye dx test and MO said that it would not change his prescription. I have explained to him my fertility concerns unfortunately we don't have enought time to go through stimulation egg harvesting...they were concerned the hormones would be like fuel on the fire. MO did say there are shots that can be given during chemo that may provide some protection to the ovaries.

momof3boys

Well, you are very young. There are young women on this board who have had their surgery and treatments then went on to have their own children. There are even a few that took a break from Tamoxifin and had a baby, then resumed tx. So, it can be done!

FilterLady

I can't offer any advice about chemo since I just had rads.

I just wanted to say welcome to the boards and I'm sure that someone closer to your age (I'm 56) will come along and have traveled the same road you are on.

Take care and please let us know how you are doing,

LaDonna

mdg

I am so sorry you had to join the BC club. Many of us felt the same way. I was also grade 2 with vascular invasion so I did the chemo. I used cold caps to keep my hair. It was not fun but I am glad I did it. Deciding on chemo was the most painful decision for me. Just know you are not alone. Hugs. Good luck.

L421

Mdg I've red about cold caps... Did I your insurance cover them? the thing for me is the toll it's taking on my husband. We kept waiting for "the right time" for a family and them bam once we buy a family home this happens. He's been wonderful but I still feel a tad of resentment from him. I feel like he's thinking he "bought a lemon". Now trust me he would never say that and it probably my own paranoid self imagining that but I feel so bad for him.....like he should never have to go through this.

nannyginnie

Hi L421. I just registered on here and saw your post.  So you sound a lot like me.  I was diagnosed when I was 29.  I'm 31 now.  You pretty much listed the beginning of my adventure word for word.  Once my BS called me at home after getting back all the test results she told me that I had cancer and I very nicely got off the phone and just started laughing.  I don't know if was from shock or what, but my parents had literally just walked through my door as I was hanging up the phone and they wouldn't believe me when I told them I had cancer because I kept laughing.  Anyway, my mom stayed at my side for the next year and a half helping me make decisions and getting through the hard times.  So I hope your husband can be that person for you. (I'm single)  After talking everything over with my MO & BS I decided that we would do chemo first, then bilateral mast, then radiation.  At this point I had a meltdown at home with my mom as I realized that I might not ever be able to have kids.  And that was huge for me because I LOVE kids so much even after being a substitute preschool teacher and then a nanny for almost 5 years.  We went to visit a fertility expert who said that they could harvest eggs and fertilize them and this is still experimental but insurance won't cover any of it.  Why? Because I wasn't infertile.  It didn't matter that I was about to become infertile in a few short week, I wasn't infertile at the time I wanted to do this.  So there went that option, my parent's actually offered to use their savings to pay for all of this but the specialist said because it's still so experimental it might not work and I couldn't throw my parent money away like that.  So back to square one.  The surgeon highly suggested that I needed to remove my ovaries because of the hormone positive type that I have.  I flat out refused.  I still want the option someday just in case it works. So they did give me a monthly Lupron shot in the rear that was supposed to protect my ovaries throught the whole treatment.  I sure hope it worked because it gave me CRAZY hotflashes.  I did lose my period because it puts you in temporary menopause.  It sucked honestly, but if it ends up allowing me to have children then it will have been worth its weight in gold.  I started chemo first actually the week before my 30 birthday (like I wasn't dreading it enough). I had one round and then on the day after my birthday I felt really sick so my MO had me admitted and all I remember is intense pain to the point where I was screaming for the nurse and then waking upwith about 15 people surrounding me asking how I felt.  So I had coded and then they rushed me up to the ICU for a few days til I was better.  And that was just round one. after being in the hospital for 2 weeks they decided to try round 2, it went a little better but not much I ended up hospitalized again for sever abd pain. They found I had develop typhlitis- which usually only occurs in pediatric lymphoma patients. It has a death rate of 50% but again after many days in the hospital and a great GI doc and my MO they got me through it.  Oh I had a ton of complications, but I MADE IT. 2 more rounds each with the same result when my MO said to take a break and try to figure out whats the problem.  after a month break they decided to do my mastectomy.  I choose to go with bilateral even though the cancer was all on the right side.  They said it was for the best because of recurrence.  Me being 30 and single said it's for the best because I want two matching perky boobs, not one perky, one saggy.  Totally vain, I know but I was 30 and I still want to meet the man of my dreams.  I had expanders put in and over the next couple months they put in over 1,000ml in each side. OUCH! It gets a lot worse the more they put in but I promise you just keep thinking of the end result and make sure they give you some for the pain like Norco or Percocet.  BTW they get very firm and it was a joke at work when people hugged me they said it hurt them too.  I then (months later) had the expanders swapped out for silicone 800ml implants.  I kept these in for a few months but I was so unhappy with the results because they looked tiny on me.  Did I mention that I am big-boned and 6'1"? I am also a little overweight but not obese i kept active but this point is I'm a giant and these 800ml (I was told that was the biggest they make) looked like little tennis balls on my chest.  

I'm sorry this is long I just want to share a story with you that will help you as you deal with things.  So anyway after hating the implants I decided to get the DIEP flap surgery witch I was so against in the beginning but now was sounding better.  I even got to go a little crazy and eat some junk food in preparation for my surgery because I wanted to make sure they had enough fat to use so my boobs would be the proper size.  It's been a few weeks since that surgery and even though they still need to tweak them a little I already am in love with them.  They look so much more natural and feel right plus I got a tummy tuck out of it for free. So that's a bonus and now in another two months my PS wants to dp Lipo on my butt/thighs/hips/love handles and use the fat from those to contour my boobs so they are perfect and give off good cleavage. (the implants dont give you cleavage since they are under your chest muscle and don't move anywhere.  

So I guess my point is don't give up, You will inevitably come to a point where you will want to give up or stop something but just keep puching through.  I promise it can get so much better.  I almost completely back to normal now and it been almost two years.

If you have any questions for me you can PM me.

Ginnie 

nannyginnie

L421

I jus noticed your post about your hair.  This might not be for everyone but with the help of my sister-in-law we bleach-blonded my dark brown hair.  It was hilarious and actually kind of turned oragange but it was fun.  We were going to shave it into a mohawk and die it hot pink before it fell out but I ended up getting super sick so quick with chemo that i just stayed blond until it started falling out.  Then my sister and mom broght shears to the ICU and shaved my head for me while I had to work hard at just keeping my head up.  I would definitely recommend shaving your head once you start you chemo, because it less stressful to wake up with little fuzzies on your pillow that long chuncks of hair.  I promise.  Long hair falling out is disturbing in many ways.

Also I wore for scarves for a couple months, but once it started getting warm out I just went BALD.  I LOVED it.  It was such freedom.  Yeah I'd looks from people like "what kind of a freak are you?" and id give them a sad face and say something about how my germ-o-phobic hair abbandoned me so they wouldn't catch my breast cancer. 

L421

Hi everyone thank you for the replies. I'm so sorry that I haven't responded sooner.... since I posted last I've had 2 surgeries. First was to remove an infected TE on left (non cancer side) and second surgery on the same side but to debridement and reclose. The healing on the left has been long and difficult 3 weeks ago my surgeon ordered a wound vac but then out of no where the incision healed! I was thrilled yet sad at the same time. I know it sounds silly but as long as my wound wouldn't heal I couldn't start chemo. Chemo seemed like a distant threat and I guess I kept hoping that something would happen???? Maybe my MO made a mistake? Maybe my pathology was mixed up???? But no mistakes were made and no mix ups took place. I was cleared for chemo and started last Mon Nov 12. I had already discussed with MO my uneasiness with Taxol and the unproven benefit for her2 neg women so we agreed (can I even say agree lol) on 4 sessions of AC every 3 weeks. To be honest I wanted to refuse chemo all together. I spent many hours crying and pleading with DH to understand but I guess the man really wants me around. The morning of chemo I broke down and considered leaving the hospital. Some how I managed to go back to the infusion area (Ativan helped) and got my first dose. I was very emotional and kept hoping DH would say no dot do it. Hmmm... Fast forward a week, much of which I slept through, and I'm still wondering how I'm going to handle this.