Introduction and my story
Hello! I'm 25 and diagnosed with IDC, mucinous subtype in Nov 2008. Stage 1, ER/PR+, HER2-, .8mm and .3mm with extensive DCIS throughout. BLM Dec 2008 with immediate reconstruction...in the middle of the reconstruction process (at full C's now!) I was thinking I should start to play the lottery since it seems I have some pretty crazy odds! I found out last week my Oncotype score was 24...much higher than my onc anticipated, so I made the decision to have chemo. 11%-15% chance of recurrance...onc said it was a toss-up on whether or not chemo would benefit me. I decided any chance I had to kill this thing for good, I should take. This appt was last Wednesday...on Friday I found myself and my boyfriend of 3 years sitting in the fertility specialist's office and starting the IVF process to freeze embryos. ("Uh hunny, can I have your sperm?") As soon as this is over I'll start chemo, hopefully by the end of February. The sooner the better. 4 rounds of TC, then Tamoxifen for 5 years. II honestly wasn't too phased by the mastectomy...never really liked the girls too much and my new ones are MUCH perkier! Not looking forward to chemo, but I'm sure once I start and know what to expect, I'll get through it just like the surgery (and be able to change my hairstyle every day!) Having a diagnosis of cancer at 25 was definitely shocking, but also eye-opening as I previously had an invincibility complex, and I feel lucky I found it as soon as I did. I've also changed my diet completely and am looking for some other healthy ways to improve my lifestyle, as well as anything that can help decrease my chances of it metastasizing. Does anybody here recommend any kind of alternative treatments? Cancer-fighting foods you swear by? I figure anything I can do in addition to the chemo/Tamoxifen will help, if only my psyche. Anyway, wanted to do the introduction thing, as I've been a lurker for awhile. Hope everyone is doing well!
Jess
Comments
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Jess - at 25 you should feel invincible!! So sorry that you had to face this crap so early in life. Welcome to the family! And, thanks for sharing your tale. Everyone's is so different.
Susan
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Jess,
I can sympathize with you...I am just 31 and going through a diagnosis very similar to yours. The docs diagnosed me with DCIS before a small microinvasion of IDC was detected upon bilateral mastectomy. That's great that you've come this far already, even with your reconstruction. Four rounds of TC will go by in a flash for you. I'm currently still in treatment, and I'm at the point now where I don't mind it at all. In fact I feel like it's my security blanket. Anyway, stay strong and once you start chemo make sure you can ask for help when you need it.
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Susan--Thanks for the warm welcome!! I'm very happy to connect with others in my situation. I've been everyone's stories to get a feel for what others are experiencing.
31andscared-Our diagnosis is very similiar! I had extensive DCIS as well. How far along in treatment are you? How did you make the decision to have chemo? I often find myself thinking about the possibility of a distant recurrance, and am hoping chemo will help put my mind at ease a little bit.
I'll start chemo on either Feb 19 or 20. I'm a little past halfway through with the IVF process. Good thing because I swear I can feel my ovaries getting bigger. Hopefully my eggs will be nice and ripe by the middle of next week!
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Jess, I'm 49, and I thought I was invincible! There's really no food(s) that will prevent cancer. As my oncologist said, if she knew of one, she'd discontinue using chemo and have all of her clients eat whatever it was. However, numerous studies have found that exercise helps to prevent recurrences, and having higher levels of vitamin D3 in your system also help. The folks at Johns Hopkins even have found that people who have a goal (something to live for)...such as their children, spouse, pet, climb the Swiss Alps, complete their college degree, etc....fare better than those who don't. While no foods will prevent or cause cancer, I believe that overall good health is an important factor, and good nutrition certainly contributes to good health.
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I think you're right, Celtic_Spirit...a healthy lifestyle in general is the way to go. I've been driving myself crazy researching different foods that can "fuel" or "inhibit" the cancer...I'm attending a "nutrition during cancer treatment" session at UPenn on Thursday that I'm looking forward to. I'll post any good info I find out!
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Jess, not much to add except "you go girl." Your positive spirit is an inspiration. Sounds like you will kick this cancer's a** and take names. We should all have such a great attitude.
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Jess:
Check out the chemo thread with the subtopic of TC for advice on getting thru chemo, it's not bad at all. Also check out the alternative medicine thread. I take DIM, I'm going to take Cat's Claw and also flaxseed oil (lignans). I take milk thistle and will continue that if I go on tamoxifen to help my liver.
Good luck. Keep exercising. I swam and walked 2-1/2 miles most days of chemo and radiation.
Peeps
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Please don't take cat's claw. It can cause renal failure.
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Jess- sorry that you had to join our club at such a young age. Good luck with your treatment. I was wondering what you meant by onco type score and how that it determined. My orn. said my cancer was stage 2A and that I should definitely have chemo. Right now am waiting for a petscan and getting a 2nd opinion. Just wish drs. would explain all the diagnosis and tests available. Good Luck!
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samiam40--My fingers are crossed that those nodes are clear!!!
peeps-Ahhh that's great that you were able to do so much during your treatment. I'm sure that helped tremendously.
Kathy-The Oncotype DX is a test specifically for ER+, node-negative stage 1 & 2 breast cancers. Looking at your DX, it looks like you would be a good candidate. It measures the potential benefits of chemotherapy. A piece of the cancer taken out during surgery is sent to a lab in CA (the only one in the country) that analyzes the specifc DNA of the tumor to develop an individualized recurrance score that determines your chances of a future distant recurrance (metastasis). It will give you a score that tells you whether chemo will have a benefit or not. The lower the score, the less of a benefit chemo is expected to have (assuming you take Tamoxifen for 5 years). I would HIGHLY recommend this, as sometimes unexpected things turn up--my oncologist was almost certain I would not have to have chemo, and lo and behold, my score came up higher than anticipated, and I chose to go for it.
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Hi there,
I am 27 years old and am unfortunately in the same boat as you! I am also Stage II, ER+. Just started chemo last thursday and donated my hair on Wednesday night. Have a short little bob going on right now and am waiting for "the day" to come when it falls out. Pretty scary stuff over there. My husband and I went through IVF too, its quite the experience. We just got married in November and I was diagnosed the week we came back from our honeymoon. If you ever wan to chat I am on here. I am on dose dense AC for four cycles followed by radiation and tamoxifen for 5 years. I like your positive attitude, looks like we have to keep our chins up! Let me know if you want to chat, vent or share stories. Or recipes! I am trying to eat better too. Fruit and yogurt smoothies are great in the morning - and mix a little benefiber in there. The constipation part of chemo can be quite unfriendly. good luck with everything!
Erin
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i have researched and i do know that sugar fuels cancer. This is my first day on this site. I have had a lumpectomy and they want me to start chemo taxol next week. I just had the port put in and it all happened so quickly. I went to my oncology app at the VA and i had been told just radiation but now they want me to do 6mnths chemo and 6mnths rad. I was only expecting rad and had no idea it was 6 months worth. Just like the gov to lie to me well not tell me the whole truth. I am going to see if they can just take off the breast and no chemo or rad. It was not in the lymph nodes and margins were negative. the tumor was neg on hormones which now I can't be treated with hormones. That just figures. Oh I got this info onFri 13th. Does anyone know if it would be possible to not have chemo or rad if I have breast removed? Before the operation I had the option of getting a mast any then nothing else but they told me if I got the lump out that I would only have rad but now this. Confused anybody have info to help me?
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Sandra16 - your surgical decision has nothing to do with the Doctor recommending chemotherapy - chemo has to do with risk of SYSTEMIC recurrence, or the risk that a single cancer cell could have gotten out of the tumor, thru the blood or lymphatic system. You don't mention your age.
I too, have stage 1, so no node involvement, yet am doing chemo due to a high/intermediate oncotype score. There are many factors that oncologists use to determine chemotherapy. Please get a second opinion if you have concerns, or ask for more info. I think every case is unique - I was also told prior to the oncotyping (probaby not used in your case as you are hormone negative) that I could possibly avoid chemo but I am happy to do it as it brings my recurrence rate down significantly and I am 44 with kids 10 and 12.
Radiation usually goes with a lumpectomy, but I do know of women that have a mastectomy and need radiation- I think due to tumor location near chest wall, but I am not sure. I am betting that the radiation is 6 weeks, not 6 months. I am assuming that because I was told I will have 6 weeks radiation too - some can get even less depending on the cancer center and the location of the tumor.
There is lots of great info on this site - today is your first day, so look around and you will find support! I did get two opinions, which were the same, so I got some sense of comfort from that.
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Sandra 16 I am guessing you are being suggested to ahve chmo & rads because you are triple negative. It tends to be a mroe aggressive cancer & therefore they attack it with more.
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doggirl25 - your picture is darling and I'm sure we're all sorry for you 2 B going through this at age 25 - that's when I had my first of four children. I was 50 and felt invincible till I was diagnosed last Sept! I was SURE I would NEVER get breast cancer and even told the mammogram lady my theory. Well, I am impressed by your good attitude. Really impressed. That means you have a lot going for you. I bet your boyfriend is great. I wish the best for you and for him. I haven't researched alternative treatments so I don't have input for you there. But I will say I went thru 34 radiation treatments and I thought it would be terrible, and it was actually a very positive experience! God helped me be grateful to get the treatment and that made a huge difference. I hope that for you chemo can be somehow a positive experience. Let anyone who offers, help you. Allow yourself the priority of getting treated and getting well. How did your first chemo treatment go?
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