Calling all TNs
Comments
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Radical - oh my goodness, thank you so much for typing all that out and sending along such great info! First, I wanted to say that I had the same problem with not getting enough eggs. My husband and I did 2 IVF's before my dx. Each time I only got 2 eggs, ended up with 1 embryo each time and neither implanted, probably due to poor egg quality. Apparently I already had old eggs! I am so very sorry you weren't able to bank any eggs prior to chemo. Infertility and cancer is such a double whammy. The paragraph you so awesomely typed sums up exactly the decision I'm trying to make right now. Oophorectomy vs. total hysterectomy. The BRCA specialist told me that in the history of the world, there has never been a cancer reported in the tiny fallopian tissue left over on the remaining uterus. Also, he said the uterus helps hold things in place, like the bladder. He also noted removing the uterus puts you at a higher risk for osteoporosis and heart disease. So with all that, he recommended I leave my uterus. But to be honest, for my peace of mind, I'd rather just remove it if I'm not going to carry a child. I worry that it's only a matter of time before they start linking more uterine cancers to the gene. So why not just take it and have one less cancer to worry about? What are your thoughts on this? Do you think you'll remove just tubes and ovaries or the whole shebang?
Simple - thank you. I'm so sorry about the bra shopping. While it is a minor thing compared to cancer, it's still just one more piece of the aftermath to deal with and I think feeling sad about it is absolutely okay. There is a lot of grieving that goes along with cancer and the loss of what our bodies used to look like is definitely one of them. I'm glad that the sales lady was nice to you and helped you find something you feel comfortable in.
Edited - Radical, I just realized you DO have one egg! That is awesome! I am in total agreement with your mother. That one little egg could absolutely be the golden one!
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Did you all hear Joan Lunden has been diagnosed withan "early stage" "aggressive" bc? Not sure whether her2 or triple negative or something else. She has started chemo. I tweeted her about the boards.
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Allydp - I am in tears reading your post - you are a very strong young lady!
There are way to many young ladies on this board - it is breaking my heart to hear the decisions you have to make at such a young age.
Sending everyone hugs and wishing everyone a peaceful night!
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finally got the mri scheduled on the little lump in between the recon girls.....one doc says scar tissue other says biopsy so Onc says lets get more pics....ugh...will keep you postedMaggie
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Allydp - I am so sorry for all you are going thru. It breaks my heart.
Mags - fingers crossed you get answers soon. Waiting and testing are the worst!
Simple - I haven't brought myself to go bra shopping yet because of feeling exactly like you said, "Bra shopping is like bathing suit shopping..." And I am terribly lopsided right now. Right side is full expanded, left side is flat. We did that on purpose for radiation treatment. My PS told me I never have to wear a bra if I don't want to, and with radiation treatment right now I don't want anything on my breast! But some days I miss my cute bras and panties that made me feel sexy... Bald, lopsided and the weight I gained from 4 months of steriods while going thru chemo - sexy seems soo far off!!! Thank goodness for my husband who tells me all the time he loves me no matter what I look like - he is such a keeper!!!
Praying for everyone! Here is to a good day today!!
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I had a full hysterectomy laproscopically and the recovery was 2-3 days. I'm not that lucky that cancer wouldn't come back in the uterus or the small part of the fallopian tube that says so I went all the way. I sleep well now.
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Ladies: I went for a follow-up with my wonderful, highly capable BS yesterday, and she confirmed what many of us have heard or read: "There's good news for you as a TN, which you probably already know: Once you are 2-3 years out, there is very little chance that you will recur*," she said. Also, that there are some oncs who aren't following patients beyond 3 years for that reason. She's cutting me loose as I approach 5 years, and her only advice was: Keep exercising, eat sensibly, keep your weight down, get an annual mammogram. (*not to say it never happens as we know from some dear friends on this forum, but the odds are very much in our favour).
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Yeah Luah!!! Wonderful news for you!!!
Congrats!!!!
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Homehelp, beautiful family!
Lori, hope you enjoyed your breakfast. Still laughing over the "like who doesn't like bacon!" LOL!
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stupidboob,
This is wonderful news as immunotherapy is cutting edge for bc treatment. However someone on the TNBC foundation website posted that it won't be tested on humans til 2016.
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LP and Curly - thank you so much. I appreciate your kind words.
Mags - glad you were able to finally get the scan scheduled. I hope the time passes quickly for you. You'll be in my prayers.
Jenjen - thanks for your reply. I'm thinking along the same lines. It would be just my luck to leave it and come down with uterine cancer. I'd rather take it and have the peace of mind.
Luah - congratulations!! That is wonderful news for you!!
Sadie - thanks for the great article. I sure hope all this exciting research leads to actual therapies soon.
So here's something interesting. I just read an article stating up to 1/3 of TN tumors express androgen receptors, leading researchers to think about using androgen blockers much like Tamoxifan. Well, during both of my fertility treatments, I took high dose DHEA, which is an androgen. I found my lump 2 months after my second treatment/cycle. I'm going to bring this up with my BS. I highly doubt she'll have much to say considering the research is so new, but I'm curious what her take is. Despite carrying the BRCA2 gene, I've always had a gut feeling those treatments played a roll somehow. The timing of taking all those hormones and then getting such an aggressive tumor was just too coincidental. Here's the article in case anyone is interested. http://www.sciencedaily.com/releases/2014/06/1406...
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Luah - thank you so much for that super positive post. Even though we read those stats on websites, it feels even better hearing it coming from someone's personal BS.
And thank you to everyone else for the warm welcome to this forum. Very much appreciated!!
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Ally, You have been in my thoughts, and I did find myself wondering at one point if there could have been a connection with the fertility treatments and your breast cancer. I am not a medical person, and yet like yourself the timing of it all did cause me to wonder if you ever did wonder. Very interesting.
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Ally, thanks for posting that article. That's actually very encouraging info for TNBC even low androgen expressing. I hope they do research on this quickly!
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Well Ally,
You can still go either way... Jen Jen did it. I will not. I'm just doing the eggs and tubes. Though I don't have the greatest luck in the world, I'm still young enough to rock climb, go pipelining and ride my motorcycle. I'm taking the chance with the low risk of uterine cancer in exchange for not worrying about osteoporosis! Lol
My genetic counselor didn't even mention removing my uterus and she told me I can keep my ovaries for another 4 years...on the other hand, if I continue to get my period, I might forgo the ovaries and tubes a little earlier!
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Radical - it's been a while since i've thought about this but i don't follow your comment about osteoporosis. Leaving your uterus doesn't prevent osteoporosis, removing fallopian tubes and ovaries (oophorectomy) would make you more prone to osteoporosis as those create the hormones. Maybe I'm fuzzy from the wine I had at dinner tonight
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Sadie great article on the treatment using a virus. Very exciting news
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Luah that is great news!
I went to my apt yesterday for the lump I found between my breast and the Ocologist didn't think it was anything but questioned areas under my right arm so she sent me for ultrasounds - took ultrasound on the right side twice - mentioned it is probably from surgery but to be safe took ultrasound on the left side to compare (freaking out at this point, been in this situation before) then came back and said they are certain it is from the surgery but ordered an MRI to be safe. They took an ultrasound of the lump I thought was something as well and found nothing thank God! Stay tuned - haven't booked the MRI appt yet. I am optimistic that it is nothing. As I said to the Onc I just don't know what is normal or feels normal anymore. Trying to understand the new me!!
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I just read Joan Lunden's bc is triple negative. It's good they caught it early with ultrasound.
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Lp, sounds promising! Fingers crossed for your mri.
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STILL CANCER FREE.......................THANK GOD and those who prayed for me.
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simplelife thanks for posting the link..................I was told she was TN but I could not find an article that verified it.0 -
LPBoston....................glad all is ok right now and praying all is well on the MRI as well0 -
stupidboob - what great news that you are still cancer free.
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stupidboob, thats fab news, we're delighted for you!
The Mods
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YAY stupidboob....jumping for joy
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Stupidboob....hooray!!! Best news I've heard all day!
Kay
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Stupidboob,
Prayers answered. Doing Snoopy "Happy Dance". So happy for you. Take care. Keep in touch & one day at a time.
Marsha
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Flimisical I will find out two weeks after surgery on the 11th whether I have enough positive HER2 markers to recieve Herceptin or not. There was not enough tissue for a definitive answer from my biospy. I may be in the boat with with you. time will tell
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