Newly diagnosed at age 30
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I apologize if this seems long winded, but I am ready to share my story and happy to get insight/advice as what I can expect from my chemo/hormonal treatment and life after diagnosis.
I found the lump myself on August 7, 2014 during a self examination; had an ultra sound, mammogram and core needle biopsy on August 13 and received my ICD diagnosis on August 19th. I elected to have a bilateral mastectomy with SNB (I do not want to ever have to deal with this again) which was completed on November 12/14. Unfortunately 2 days before my surgery my plastic surgeon broke his hand so I will have to have my reconstruction done at a later date.
I am happy to say that my surgeon was able to get clear margins (tumor size was larger than expected at 3.5cm) and my lymph nodes came back clean. My tumor is ER+, PR+ and HER2-; I should be starting chemo any day know (just waiting to hear from the Cancer Clinic). Originally my oncologist wanted to do 3 months of AC (1 round every 3 weeks) and 3 months of T (1 round every week) and then 10 years of Tamoxifen (seems long!!). Unfortunately my mother and grandfather on my dad's side both had Leukemia therefore we have elected to go for a different treatment option as we feel the risks are too great for me taking "A" chemo drug. I will now only be doing 3 months of TC and either 5 or 10 years of Tamoxifen.
Since I am 30 and my husband is 37 we were upset to hear that I would not be able to get pregnant for at least 12 years (due to Tamoxifen); that puts us up in age before we would even be able to conceive (not to mention possibility of a high risk pregnancy due to age). I asked about getting my ovaries removed (I had already made peace with the prospect of not being able to have children before finding out hormone status of my cancer); my oncologists things I am rushing my decision and that I should wait it out. She stated 42 is still young to have children (keeping in mind my husband will be almost 50!). I am trying to research what has more risks....staying on Tamoxifen for that long or having to do hormonal replacement therapy. Has anyone had to deal with this dilemma? Did anyone elect for an Oophorectomy?
This whole ordeal has been such a whirl wind. Mentally I good and fully understand everything I can laugh and joke around (as they say a negative thought will kill you quicker than a germ) but I do not know how I emotionally feel. I feel numb to the whole situation (not sad, not angry, not happy, etc.)
Any and all advice is welcome!!
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Hi Teri - So sorry for the diagnosis especially at your young age. You may have already found this thread. https://community.breastcancer.org/forum/27/topic/...
It is called "Coming off Tamoxifen early to have a baby." I think you will find a lot of hope there. I'm glad you found us. Sending you a gentle hug.
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Hi Farmerlucy, thank you so much for the link! It was a good read and makes me hopeful for the future!
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Hi Teri,
You seem very well read and knowledgeable about your disease
You may be able to re-visit the discussion with your oncologist 5 years from now about continuing the Tamoxifen (they may have an even better idea of exactly how much the benefit is to continuing for 10 years)
Additionally, there are other things to consider if you're interested which include egg-freezing, surrogacy or adoption, If fertility is your main concern than it may make sense to ask for an appointment with a specialist in that area
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So sorry you are facing this at such a young age. I wanted to link this program for you to see if it was an option, or something of interest.
http://haveababy.com/infertility-treatments/fertil...
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Thank you for the link specialK! I am ok if we are unable to have a child of our own. We have always flip flopped on the idea of starting a family. I know there are lots of children in the world that need a good family if we truly want to become parents.
I am concerned as my cancer is ER+ 100% and PR+ 40%; knowing that my ovaries are feeding this disease I dont know if I should have them removed to reduce my chances of reoccurrence. In the long run I don't know what is healthier, staying on tomoxafen for 10 years or having them removed.
I won't make any decisions until I get my genetics test results (determine if I have BRCA genes).
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Is that what that means? When you see the biopsy report and it says, for example, PR+ and then % of nuclei staining 80%, does that mean that it is 80% positive to work with hormone receptors? Or that that's the number they tested? Or what? (I just got my form a couple of days ago and wasn't sure what it all meant.) -
Hi wrmbrownie,
From what I've read a percentage tells you how many cells out of 100 stain positive for hormone receptors. So for me 100% of them came back positive for ER.
I hope that helps!
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Very happy I found this thread - I'm 31, diagnosed in November 2014, and scheduled for bilateral mastectomy this week. I'm also getting married in March, and I have a lot of concerns surrounding post-surgical treatments and pregnancy later on. I hope you are doing well! There's so much to think about, and so much going on, that I feel a little overwhelmed at the idea of reconstruction too. I'd love to hear more about any of these things from other people on the forums - any information is appreciated
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Hi claris. We are very happy too that you've found this wonderful community full of knowledge and support.
Many things going on, indeed! Besides the advice and personal experiences from other members here, you may also find interesting to take a look at the Mastectomy and Reconstruction sections on our main site.
Here in the boards there are other related forums that you may want to read/join:
- Surgery - Before, During, and After
- Breast Reconstruction
- Living Without Reconstruction After a Mastectomy
We hope this helps! Wishing you the best of luck with surgery.
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