Welcome Everyone!

Beth - posted on 11/24/2008

THANK YOU, THANK YOU, THANK YOU! I sooo needed someone else that is going through this. I was diagnosed with breast cancer in October so this is all new, but wow it sucks! I am about to have a double mastectomy with immediate reconstruction. I am terrified, yet just want to get it over with. I am 31 years old and have 3 girls, 8,6,and3. I pray that they will never have to go through this, but that if they do I will be here to help them through it.

Nichole - posted on 11/20/2008

Fascinating group of women here. So here's my story. I was diagnosed with Stage II Hodgkin's Disease in 1990 at age 17 and treated with 2? 3? rounds of chemotherapy followed by 4 weeks of radiation. Fully cured, I still receive annual check-ups at the cancer clinic as part of a study group. Flash forward 10 years, my husband and I decided to get our family started. Five years and two IVFs later, our amazing little girl was born end of 2005. In June 2008 (immediately following the miscarriage of a badly wanted pregnancy), a regular check-up at the cancer clinic revealed a swollen lymph node in my armpit. Further testing revealed Stage III breast cancer, a 9 cm multi-focal tumor that had spread to several lymph nodes. The mammogram (I've been having them annually since age 30) revealed slight change to the breast but the doctors were shocked at the size of the tumor, as it wasn't palpable and didn't show up clearly on any scans. As you probably already know, mammograms don't work well in younger women as breast tissue is too dense. (I am 36.) My cancer is Grade III, HER-2-neu positive (very aggressive), and suspected BRCA1 (or possibly 2) positive. Right breast and all axillary nodes removed September 2008 (revealing full size of tumor), chemotherapy (carboplatin, docetaxol, herceptin) started October 2008. I won't be offered radiation, as the radiation I received previously for my Hodgkin's Disease was to the same area of my body and additional radiation may result in tissue failure. However my surgeon has recommended mastectomy of the other breast once chemotherapy is completed next fall. As I live in Canada, genetic testing for BRCA1/2 is free of cost, but it will likely take 8 months or longer for me to get through the queue and have the test done/results back. (I could go to the US and pay to have the test done sooner.) The flip side of our health care system is that I can be treated in any city with cancer treatment facilities, and I can choose a different doctor if I have a reason with no worries about insurance. I won't be broke at the end of this journey.

So. What to do? My first concern was of course for my almost 3-year-old daughter, and I am pulling together all resources available to me for communicating appropriately with her around this issue. I'm currently reading a great book, "When a parent has cancer: a guide to caring for your children" by Wendy Schlessel Harpham, M.D. (who incidently has published a number of other helpful references on dealing with cancer). I'll post some of her suggestions on the separate conversation I've started (inadvertently) around the issue of communicating with children about cancer. (Sorry about the separate conversation - still new to Facebook & thought I needed to type something in the boxes provided to become a member of this group.)

The second concern of course is surviving to see my daughter grow to adulthood, and possibly to have a second child (a faint hope at this point, but one that just won't die). Since being diagnosed I have been bombarded with information from well-meaning friends and colleagues about alternative and complimentary therapies available for cancer treatment. However I have found a group in Vancouver, BC (the province where I live) that reviews all the latest research on all cancer therapies and synthesizes what they have learned for BC cancer patients to use. Wonderfully informative stuff, and it really puts the patient back in the driver's seat in terms of working with their doctors to come up with the best overall treatment plan. Rather than being tumor-focused, Inspire Health takes an overall, holistic approach to cancer treatment and offers all kinds of simple things that a patient can do to reduce their risk of recurrence and increase the chance of survival - such as exercise (women with breast cancer can reduce their risk of recurrence by up to 50% by walking briskly 5 hours a week), support groups (increase risk of survival), meditation/visualization & positive imagery, nutrition (the same things we all know plus a few extras - more fruits & veggies, use brown instead of white rice/breads/pasta, expand the use of other grains (couscous, quinoa, etc.) use butter instead of margerine, avoid commercial salad dressing & switch to cold-pressed, extra-virgin olive oil, and SO much more), nutritional supplements (take 1,000 to 2,000 mg of Vitamin D every day - this has HUGE benefits in terms of reducing your risk of ever GETTNG cancer; also anti-oxidants (jury still out over whether they're safe during chemotherapy), fish oil, a bunch of other things...) If I can figure out a way to post Inspire Health's 80-page guide to integrated cancer care, I certainly well. It is extremely informative and a resource I am convinced all cancer patients should have.

Phew! That MUST be enough for anyone to read! Sorry to ramble.

Jennifer - posted on 11/20/2008

Hi my name is Jen i have a 17month old son named Tyler. I was diagnoed with hodgkins disease 3 months after he was born went through 6 months of chemotherapy and have been 8 months cancer free and chemo free. I look forward to being a part of this group and hoping that i can help you as much as i think you all can help me.

Jaimee - posted on 11/19/2008

Hi everyone! I am an (almost) 5 year survivor of late stage III Hodgkins Lymphoma. I was a single Mom of 2 very young daughters when I was diagnosed. After 6 months of chemo and 25 radiation treatments I have been so lucky and grateful for all the wonderful people who helped saved my life.



This is a great idea for a group!!

Anne - posted on 11/16/2008

Hi everyone, my name is Anne Moore and I was diagnosed with cervical cancer in Oct 2007....2 weeks after I found out I was pregnant with my daughter. I chose to postpone the treatments until after my daughter was born. I had a relatively easy pregnancy with no complications, but was well monitored by doctors and oncologists. I delivered our baby girl, Abigail Eileen, on July 15th. They have now found that it spread into my uterus. I started chemo last week and it has been difficult. My mom battled colon cancer 5 years ago and she said that a postive attitude is key to beating it and recovery. Sometimes it's just hard when you wonder if your 4 month old child will still have a mommy in a few years.



This is my second time with cancer. I was diagnosed 8 years ago with cervical cancer as well, but had been cancer free until now. Like some of the rest of you, I had several misdiagnoses which led to my original cancer diagnosis. It makes me angry that I have to go through this yet again because someone got it wrong. Hearing all your stories is a true inspiration to me that I will beat it again! Thank you Tracy for starting this group.

Lorie - posted on 11/15/2008

Hi, everyone! My name is Lorie and I was diagnosed with breast cancer in September. I started radiation this week and if I stay on schedule I will finish on Christmas eve. I have 2 little boys and am thankful that they don't know what is going on with mommy but I'm also terrified that it could come back some day.

Kim - posted on 11/15/2008

I am a Mom of 3 kids battling stage 4 breast cancer. It would be nice to talk with someone who is/had going through all the things that comes with the fight and having kids! I look forward to meeting some new people.

Jennifer - posted on 11/12/2008

Hello all, I am so happy this is here. Cancer is around me friends, family, and of course myself. I truly believe it is beatable w/ the right mental state and proper nutrition.



I know of three seperate people who had stage four inoperable cancer, one started from lung, one had mylenoma, and one had colon cancer. They each began a juicing plan which is a strict plan that you juice w/ a juicer. There is nothing else added to the diet and so far everyone that has done it has dramatically reduced their cancer.



Since, I was pregnant they could not stage me but my tumor was large and had attached to my rib cage. With my hormones in overdrive they wanted to get started as soon as possible. I went through a lumpectomy & LB masectomy. I believe your mental state is critical. I eliminated the stress that I could get rid of and began getting massages every two weeks to help release the toxins out of my body during chemo. I came to a realization of empowering myself, I am the only person that will look out for me. Noone else, yes others may suggest how I should be but I ultimately make the decision - To give up since I have the excuse of cancer or Start to realize that I want to be here for my children and I am not going to give in to cancer.



I don't want to give anyone false hope with the juicer but I have seen the difference and I know at this point you want help, suggestions, and answers.



If anyone needs to talk please contact me.



Hugs and prayers,

Jen Johnson

Stacy - posted on 11/11/2008

Hi everyone! I am Stacy in Tyler, Tx. I have 3 children ages 10,8 and 5. I was diagnosed with Stage 1-2 breast cancer on July 15, 2008. I just completed 4 rounds of ACT and had surgery to remove the remaining tumor on mediport last week. I still face radiation and at least 5 years of Tamoxifen. I can't help being terrified of what might happen once treatment is over. I had no nodal or vascular involvement with all scans clear and have kept a "brave face and positive attitude" because I know that if I fall apart then my entire family will. On the one hand I am happy that there is light at the end of the treatment tunnel, but I am still scared!

Tracy - posted on 11/07/2008

Yeah, you know it's not a great club to belong to I agree, but I'm so greatful to know I'm not alone and to hear from all of you. It's been a really tough week for me. I finally got my PET scan and it did "light up." But I think I knew it would. I have a small tumor in my colon that needs to be removed surgically and chemo once again, 6 months to indefinately.

Since we just moved back to my hometown, I've had to find a new oncologist and since my insurance is horrible, there is only one doctor within 100 miles that accepts my insurance. Not to say that he's a bad doctor, I think he's a very good doctor, just completely over booked and since I'm new to him as well, I'm kind of at the back of the line I guess. I'm really trying to be positive anyway and hope that he's got a good plan. I started this group hoping it would just help others, but fortunately, it's really helping me tonite so thanks!

Janna - posted on 11/07/2008

Tracy,

The same thing happened to me when I was diagnosed.. They said it couldn't possibly be cancer because of my age 28 at the time and because of how large the tumor was.. They were wrong of course and this passed winter I began to complain of the same pains that I had w/ my tumor and they kept telling me it was a strained muscle--all because my blood work was still in good ranges.. Come to find out after 3 months I had another tumor 5cm at the time and I was advised by my 2nd opinion to not even have it out.. No one really understands that frustration and why I really don't trust any doctor anymore.. I was told that as part of my routine screening I would have Ct scans along w/ the bloodwork and I am still fighting them for that--now it isn't "medically necessary" so they won't push for it for me.. I am limited because I have to see GYN/Oncologists and there aren't that many where I live, so I totally understand your frustration w/ your dr.'s. It really pissed my off that they kept using my age as their reasoning as to why it wasn't cancer and then why I needed to do chemo and then again as to why I needed to do chemo again..

Your kids are sooo cute!! My youngest was Indiana Jones for Halloween!!

Enjoy the weekend:)

Karina - posted on 11/07/2008

Hi all!

My name is Karina and I was diagnosed with 3C breast cancer in 3/07. I have completed dbl. mast., chemo and rad since then. I am now trying to figure out how much of what I am feeling is "normal" and what is something that can be fixed...either with meds and or therapy (mental and/or physical!) The chemo brain that some say does not exist has turned me into someone I don't recognize. Memory loss, inability to complete simple tasks, ADD type feelings etc. The aches and pains of every joint and bone in my body, the inability to make a clenched hand etc. I know I will never be the old me....but GOD I miss me! My boys are 9, 8 and 2. It is a horrible club to belong to...but I am grateful to find some people that may understand.

Sylvia - posted on 11/05/2008

Dear Tracy,

It saddens me to hear that you can't get your scan. Is this the same doctor you have had the whole time? I would suggest getting a 2nd opinion or getting on top of them. I don't think the half of them realize the things that go through our head and the scare we always carry with us that they may say it has come back. There isn't a day that goes by that I don't wonder what would I do if it did. My daughter unfortunately was 2 at the time I was diagnosed and the aftermath I am now dealing with is nothing compared to the disease itself. Good Luck with everything and please post when you hear something and don't by any means be sorry on venting. I knows we all need it sometime.

Tracy - posted on 11/02/2008

Hi Carey,

I just wanted to say that I read your article. I truly understand the disappointment and anger you've felt knowing that you could have been treated earlier. I was misdiagnosed several times and was told "you're too young to check for colon cancer". Funny how they think AGE is such a determining factor while the children's cancer centers around the country keep popping up. 5 months passed and that "IBS" turned out to be Stage 3B Colon Cancer...And now, because of overbooked doctors and incapable nurses/staff, , I have been waiting over 2 weeks to just be "scheduled" for a non-routine pet scan because my doctor who doesn't have time to actually see me thinks I surely will "light up"...is it just me? Sorry...I'm venting It's just so frustrating. Dude, this is my life, my son's mommy's life...this is shameful. Our doctors can do so much better than this.

Back to Carey tho, I think your article was great and you keep showing your scars!

Carey - posted on 10/29/2008

If anyone is interested, my local newspaper did a feature on me for Breast Cancer Awareness Month. Here is the link to My Breast Cancer Story:



http://www.palmbeachpost.com/accent/cont...

Janna - posted on 10/29/2008

Hi Everyone! I am Janna and I was diagnosed w/ Ovarian Cancer in Apr 2007.. I have 3 kids at the time they were 8,5, and 3.. I went thru intense chemo, surgery (the tumor was over 17cm bigger than a volleyball) and had a HORRIBLE battle w/ depression after the treatments stopped. I was considered cancer free until I developed another tumor and had surgery to remove it in May 08.. No cancer was found but this kind of tumor was so rare that it was suggested to go the chemo route again only twice as long.. I chose not to do it. I couldn't put my kids, husband or myself thru that again.. The chemo is hard and it sucks but being in that deep depression again to me was worse and more demaging to my family than going thru chemo again.. I am glad to have found this site:) Thank you Tracy for starting it!!

Maggie - posted on 10/28/2008

Hi Tracy and Carey - I'm Maggie, in Chicago. I have a 1 year old son, Michael, and am currently battling Hodgkin's Lymphoma. I will finish my 8th cycle of chemo in about a month. My scans are looking good so I'm hopeful.

I apparently had Hodgkin's while I was pregnant but wasn't diagnosed until Michael was about 6 months old. While I was pregnant, my mom was diagnosed with colon cancer - she finished chemo in January and is doing great. Strange mother-daughter activity, let me tell you!

I'm working full time, as is my husband. Any tips you can provide would be greatly appreciated!

Tracy - posted on 10/28/2008

Wow, what a coincidence! Aren't 6 year old Aidans the best!



I was considered cancer free up til a few days ago and then the world stopped spinning once again. Fortunately, I have been very realistic about what could happen so I'm ok. But when i think of my son seeing me sick, possibly losing his mom to this disease, well honestly I can't help but feel guilty and wonder how much pain this will cause him. Now that's unbearable. Most people think its the treatment that makes you feel sick..when you're a young mom, there's so much more that hurts worse. I'm sure you would agree.

Carey - posted on 10/28/2008

Hi Tracy! I am Carey, I also have a 6 year old son, named Aidan and a 6 year old daughter, Abigail, they are twins. Like you I spent most of 2007/2008 batteling Breast Cancer. I am currently cancer free, but I still live, think and feel everyday about my cancer. It is especially hard being a young survivor with young children, it has effected the entire family. Thank you for starting this group :)