Experienced shared by:Lily Rose
Summary
I am 38 years old and was diagnosed with Breast Cancer 13 months ago. I have gone through chemotherapy, a few surgeries, radiation treatment and more - more details about all that to come below. I have been very frustrated along the way because, although I love where I finally ended up seeking treatment at and my Oncologist there, there have been so many things I have experienced, and am still experiencing, that I did not expect and wish that I had been made aware of. I know doctors can't possibly tell you everything that you may experience, but some things that I found along this journey were common amongst all the other patients I met and it seemed to me as thought the doctors should have made this information available before-hand. I like to know what to expect, rather than hearing "Oh, that's normal" after I'm already experiencing it!
I am no expert, nor am I a doctor. Just a cancer patient wanting to help others in my shoes....
My Cancer Facts & Things No One Bothered to Tell Me
I was diagnosed with Invasive Ductal Carcinoma in June 2008. Lumpectomy with Sentinal Node dissection in July 2008. Positive Sentinal node (only). Positive genetics test for BRCA2. Chemo: AC dose dense, every two weeks for 4 times - too difficult to finish, I refused the last one and ultimately changed doctors and treatment center - best thing I could have done. Started Taxol weekly for 12 weeks - was a piece of cake compared to AC!
First thing I learned around this time which I had never been told about:Weight gain! I always thought/assumed chemo made people loose weight and asked my doctor about this. I was told that is true with most cancers other than Breast Cancer! Great! Wham - I'm 30 pounds heavier with no clothes that fit and a huge disgust for myself and my appearance! Apparently the weight gain is from 1.) steroids that they pump into you with the chemo and 2.) chemo makes your body basically go into menopause - or "chemopause" as some call it - which involves a slow down of metabolism, etc and, thus, weight gain! Now I have body image issues on top of everything else!
Ok, by the time chemo was over my hair had barely started growing back - yay! - and I found the guts to actually go out in public without my headcover. In February I underwent a bilateral mastectomy (all due to the BRCA2) and tram flap reconstruction. Was in surgery for 11 hours and in the hospital for 1 week.
Second thing no one told me to expect: after the initial few weeks of recuperation, I would not look anywhere near normal. I thought I'd have the surgery, heal for a few weeks and then have a flatter belly and nice, new, perky boobs. Wrong! I had (still have) new pouches of fat on my hips where the hip-to-hip incision was placed - was told is was due to the skin being pulled down and reattached together. "Don't worry", my plastic surgeon says all the time, "I'll fix anything that's not perfect". Also, the boobs are not so perky and they kind of wrap around to my side a little - ew! Again, he says he'll fix anything that's not perfect. Ok, and I'll hold him to that, but why the hell didn't he, or his staff, tell me what to expect. Sure, I could have asked more questions, but I had no idea what to ask!
April: contoversy between my Oncologist and several different Radiation Oncologists as to whether or not I should have radiation therapy. The first Rad Onco I went to said no, I did not need it since everything I've done so far was pretty aggressive already and it was only one positive lymph node. Second opinion Rad Onco said better safe than sorry, let's just do it. My Oncologist agreed that I should do everything I could to improve my chances of survival. Reluctantly, I agreed to do it only because I couldn't think of a good reason NOT to. Had 28 sessions - 5 days a week; it was easy, but a pain in the ass. Toward the end I was quite sore and raw in a few places in the armpit area.
Third thing no one bothered to mention: A lot of cancer patients, due to weakened immune systems, develop Shingles! Had I been told this, I would have sought medical attention right away when the sore spots in my armpit began to welt! I thought it was just my wounds healing - so did my Oncologist. It got worse. I began getting what seemed to be bites down my arm to my elbow - they itched like MAD! I got on the computer one night at like 3am and went back to bed around 5am convinced that I either had bed bugs or scabies! A week and a half later I saw my Rad Onco for a follow up and she took one look and immediately told me I had Shingles. I was relieved it wasn't scabies! I had no pain, just itching so I thought it wasn't too bad. She started me on medicine and I started researching - found out that Shingles is best treated when you start the medicine within 72 hours of the rash showing up - DAMN! See? Had someone somewhere along the road told me of the possibility of getting Shingles I'm convinced I would have sought treatment for them right away. Now I've had them for 6 weeks and it has been a horrible, horrible experience - they itch enough to drive you mad - really, truly, insane mad! That's not even the worst of it - I woke up two fridays ago in serious pain all over and swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection!!
I truly believe that the radiation therapy was 'the straw that broke the camel's back' and that had I not done the radiation, none of this shingles/staph infection crap would be going on - I know I can't do anything about it now, but I'm really pissed that I decided to go through with the radiation even though I really didn't feel it was necessary! This is where I'm at right now.
Had to postpone my Oopherectomy, which was supposed to be two weeks ago, while I was in the hospital with the Staph infection. I really want to get it over with but I will not do any more to stress my body until I'm completely health again - hopefully that will be very soon!
A Look Into My Head at the Beginning:
I wrote this on September 30, 2008:
I would like to know if I'm alone. I'm 37 and am currently going through chemotherapy for breast cancer that was diagnosed June 25, 2008. I lived in San Diego for 11 years and my husband and I tried for several years to get transfers to Florida so that I could be by my family again. I stopped working after I had my first baby in April 2005 - actually, I went back to work when she was 5.5 months old but she wasn't adjusting to daycare well (refusing to take a bottle or sleep ALL DAY) so I asked my employer for a few more months of unpaid leave of absence and they said no, so I had to quit because, obviously, my baby came first. 5 months later I got pregnant again and had my second little girl in November 2006. By the way, I breast-fed both my girls until they were 14 months old - because I knew how good it was for their health AND because I knew the benefits for me, like reduced cancer risk! Ok, fast forward to May 2008 - my husband's transfer request was finally approved and we're actually going to move to Florida!
A couple of weeks later I feel a lump in my left breast while rinsing off in the shower. I scare right away because it feels unlike any other lump I've felt there before. I go to the doctor and am told it's not a tumor because it moves too much, probably just a cyst, but let's get you scheduled for a mammogram anyway. Three weeks later I go for the mammogram and am told it's definitely not a cyst, but it could be a fibroadinoma - a benign tumor - which is actually common, especially in someone my age, but let's do an ultrasound and biopsy to be sure. I went home feeling very relieved and sure it was no big deal. My mother was diagnosed with breast cancer when she was 52 and survived and has been cancer free for 6 years now, but I never thought much of my increased risk because I was told that since she was older than 50, it was most likely age related, and she was the first in the family. A few days later, June 25th, I received the call - you have breast cancer.
I was in the middle of packing up my home to move to Florida in 6 weeks, I was taking care of 2 toddlers full-time, and struggling to figure out where we were going to live when we got to Florida - we actually made an offer on a "short sale" home that my parents found for us. I saw a surgeon right away and was given the choice of lumpectomy to remove the tumor or mastectomy. Because I was on a time crunch because I needed time to recover from surgery in order to finish packing my home I chose lumpectomy with sentinel node dissection.
Surgery was early July and all went well, but 4 days later I received a call from my surgeon that I had to go back in for more surgery because the margins were positive and they had to remove more tissue - oh, and also 1 of the 18 lymph nodes removed was positive for cancer cells. A few days later I had the second lumpectomy and that was all......somehow I got the rest of the house packed and we arrived in Florida mid-August. The short sale was still pending, but the owners had moved out and agreed to rent the house to us until closing. We moved in a week later when the movers arrived - the same day hurricane Fay was beating up south Florida - welcome to Florida!
In August I saw my new Oncologist for the first time and the following two weeks consisted of a breast MRI, some heart scan procedure, a surgical procedure to implant a port for chemo and a PET/CT full body scan. Oh, I forgot to mention that AFTER my two surgeries in San Diego, I received results from a blood test I was given prior to surgery that came back positive for me carrying the BRCA2 cancer gene. Wow. Now I had to deal with more stress - what to do now and the stress and guilt of the fact that I may have given this gene to my daughters and we won't know for years and years. My oncologist recommends bilateral mastectomy and oopherectomy (removal of ovaries & tubes), due to the positive BRCA2 gene, but chemo first. Chemo started September 10th. I was told I would feel fine initially and I may feel some effects after 48 hours. I had been warned I would feel really tired - I thought, and told people, I have two little kids - I know tired and I can deal with being tired, no problem. It hit me 3 hours after chemo - nausea and exhaustion. Exhaustion - lethargy - like I can't even explain nor have ever felt before. Misery. It lasted exactly 72 hours and then I felt normal again. Second chemo was two weeks after the first - 6 days ago. I still feel horrible. Before chemo I knew I had cancer but I knew I would survive, because I had to, and everyone admired my attitude about it. I didn't feel sick even though I knew I had "cancer". Now I feel sick. Chemo sucks. I don't feel normal and I hate the world and whoever thought that I needed more on my plate at this time in my life. I feel alone.
The day I felt the lump, I said to my husband, mostly jokingly because I had no clue what was to come, "this is happening now, in the middle of this move crap so that I can be near my family for help while I go through chemo". That sends chills up my spine now - amazing how your brain knows something's wrong before you actually do! I had no clue whatsoever that I was actually right..........but not so much.
So my husband's commute isn't terrible we chose to live between his work and my family, so we're about 50 minutes from my family - not exactly a hop skip and jump away, making it not so easy to get help from my family. Since my positive gene test, my mom and sister have been tested and my sister, thank goodness, was negative, but my mother was positive. Now my mom is facing her own issues - she's having an oopherectomy today. She's facing bilateral mastectomy now, too, but she wants to do it before the end of the year for insurance reasons. My family is doing their very best to help. My husband thinks I'm just feeling sorry for myself and he wants me to be a fighter and thinks that by acting as if he doesn't care at all about what I'm going through I'll fight more. I didn't feel sorry for myself before, but now I do. I left my comfort zone of 11 years. I left good friends that I think would have been a huge help. I left my in-laws, who I realized too late were - are - wonderful and would have done anything they could to help me get through this I'm feeling a little regretful for leaving San Diego, but the fact that I got immediately thrown into cancer treatment upon arriving here doesn't help. I have no one to help me and I feel like I'm dying. I haven't even mentioned the financial ramifications this is having on my family - yet another stressor. I've completely lost faith. Not in my life because I still know I'll survive this, but faith that there's a good god or higher power out there.
I did nothing to deserve this. I want to know how Christina Applegate got away with not having to have chemo! I couldn't get this thought out of my head - I don't know why.
I tried to quit when I saw my doctor yesterday and she won't let me - no one will. Only six more sessions I keep reminding myself every two minutes or so. It's going to take a miracle to put a smile back on my face. I do believe everything happens for a reason and sometimes the reason is unknown, but I really need to know why the universe felt I need this test - why now when I have so much on my plate already. I started writing this out of anger because no one wants to help people like me - the only ones talked about in the media are the famous ones or the ones who would make for a better story - not the REAL ones like me. I'm lonely, sick and miserable.
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