Calling all TNs
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So happy for you Jen.
((((((Lisa))))))
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like the others, THRILLED!!!! Jen!!!
Stupid question.......when everyone was first diagnosed did they do testing to look for the cancer elsewhere?
Kath
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Hello all. I don't remember if I posted in this forum yet or not so here I go just in case. July 26th I was diagnosed with triple negative breast cancer. I chose to have a BMX Aug 7th and followed that with 4 rounds dose dense of AC and 4 rounds dose dense of Taxol. The final pathology after the surgery was stage 2b with 1 lymph node involved. I did have the genetic testing done and was negative for all of it. This was all pretty shocking as no one in my family has breast cancer on either side. Cancer doesn't run in the family at all. Anyways I read that Triple Negative is a cancer that likes to be a JERK by coming back. How many of you had a BMX and later on in life it came back? Just curious. BTW I just finished chemo and will be going back to work next week after the doctor releases me. It has been a rough few months that also feel like they flew by.
Thanks,
Kelsey
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Lisa, - After all of the chemo and radiation you so recently had, I bet that any possible remaining cells in that area were wiped out, too!
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Kath--In response to your question I just recently asked if I will have further testing if the cancer is anywhere else and my doctor said NO. I kind of want it to make sure it hasn't gone anywhere else but she is pretty sure it hasn't.
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Kath my oncologist didn't do any further testing because he said my path report didn't warrant any. Kelsey, usually after treatment no tests are done unless you have a concerning symptom.
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Kath, I had a bone scan, and a full body CAT scan when I was intially diagnosed, prior to any surgeries as part of my staging.
Kelsey, sorry you had to join our group! I was diagnosed a year ago, bmx, chemo and rads - finished the fun in August. I did not have any more screening once done with treatment, but then my tissue expander got infected. That came with another CT, chest xrays and blood work. As for actual cancer monitorring - nothing, unless I feel a lump or have symptoms that warrant additional testing.
JenJen, best christmas present!!! Great news!
Everyone, wish you a peaceful holiday, clean scans for those patiently waiting and Santa to bring cure!!!
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Hi Shewolf,
You have a similar story to mine except I did have the BRCA mutation (even though cancer doesn't run in my family) I even asked my mom if I was adopted or switched at birth.
Just finished chemo and reconstruction myself so I have no idea about the conning back part!
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Lisa, (((((Hugs and prayers being sent your way)))). I think your friend's plan of occupying yourself with things you can control is a great one. Thinking positive thoughts for you.0 -
Hello all,
I haven't written in a bit. Life was waiting & I jumped in. Just when you think you have the "Bull by the horns" he throws you. Have been feeling great. Doctors visits all good. Just saw BS & 26th is 2 years. He was thrilled with me, as I had to stop chemo or be one of the "chemo deaths" they don't like to discuss.
Sunday I was tired a lot of the day. Monday woke up feeling like Mack Truck hit me. Weak, joints hurt, spine, etc. No temp or cough, etc. Of course, brain goes to Mets!! Went to yoga this morning & could barely do anything. Oh by the way have been losing weight too. 6 pounds in 4 days. (That is not normal for me).
Have been afraid to discuss with better half as didn't want to upset him. But broke down this afternoon. Been irritable, little crying jags along with all the other symptoms and I told him I was thinking Mets. He told me no not mets but wheat withdraw. He has taken me off of all wheat for about 5-6 days now & it just hit my system and can last for over two weeks. ( I don't cook. Am spoiled. No shopping, cooking, dishes. No he is not for rent!
So gang, don't let your brain going to a running spree. We need to try and cool our runaway brains.
Congrats to all that have achieved new milestones. Each one is important.
Those that are deep in the trenches, I'll pray for you.
Merry Christmas or Happy Hanukkah.
Best to All,
Marsha
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hi Saile, sorry to hear about your Mom's dx. Did she get regular scans or blood work between 2008 and 2014 Jan?
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Marsha, isn't it something how our brains go to mets the first thing with any symptom. I hope you are over the wheat withdrawal. I've been gluten free since being diagnosed with Celiac sprue in July by my GI doc. I miss wheat terribly, but my gut doesn't....so I don't plan on ever eating it again. My body thanks me for that decision....even if my mind is jumping up and down for a cinnamon roll!
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Interesting article on the fears that those of us with TNBC face.....
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Lisa... hope its nothing. will wait for your text.
jen...what a lovely gift this holiday season, isnt it!!
Toby...i went through a PET/CT post TNBC diagnosis and surgery. It wasn't needed, a few doctors said.
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Simple, that article is spot on! A lot of people, including my own husband can not understand why I think every ache and pain may be a met. It sucks to not be able to move on like we want to or like our family wants us to after treatment! For me every month following treatment gets harder because I read that recurrence rates are highest for us within the first three years and the peak is 18 months. Well I'm 16 months post chemo. January will be 2 years post diagnosis and February will be 2 years post mastectomy. So my stress had been very high lately. Thanks for posting the link.
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Luvmydobies: Just so you know, in the study referenced below, they established that the period of time in the study for which they started measuring from in regards to recurrence data was from the dx date - so maybe that will help you a little bit in terms of your psyche. Here is the info:
The question of "what is my anniversary date" often comes up in this forum, and we often have different diagnosis or treatment dates that we reference as our anniversary date. I came across this article and in regards to recurrence peak, this is what is mentioned. The link has other Q&A regarding TNBC.
"August 2013 Ask the Expert: Triple-Negative Breast Cancer Highlights"
"Question: If TNBC is to recur it is usually in the first 2-3 years and I have heard that at 5 years or beyond there is a better outcome. My question is when do you start to track your anniversary date? The day you were diagnosed, the date after you completed chemotherapy or radiation therapy, or the date you had surgery?"
"Dr. Anders: In the landmark study that defined the peak of recurrence at 3 years for TNBC, this was defined as "from date of diagnosis" in the Clinical Cancer Research article by Rebecca Dent et al. entitled "Triple Negative Breast Cancer: Clinical Features and Patterns of Recurrence."
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My wife recently attended this event and met world-renowned geneticist Mary-Claire King, Ph.D., known for discovering the BRCA1 gene mutation and its link to hereditary breast and ovarian cancer. My wife, and other locals who are BRCA-1 or BRCA-2 positive, were guests of honor. http://hudsonalpha.org/support-us/donate/tie-the-ribbons .
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JenJen: Thanks for posting the link to Dr. Sanjay's interview with Dr. Soon-Shiong. It was riveting - some of the information they talked about I had heard about before and seeing that Dr. Soon-Shiong was at the helm of it was very comforting. I'm so glad he is looking at various fronts for fighting cancer. Did you happen to catch the part where Dr. Sanjay said that the majority of mutations are not deadly ones, which could explain why some people succumb to the disease while others survive? Also, Dr. Soon-Shiong was the one who invented one of the cancer drugs that is on the market now for bc. What a great link - thanks again for sharing.
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Sails we're dishing out links....it's never too early to start planning for triple negative bc day (March 3). http://campaign.r20.constantcontact.com/render?llr...
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Thanks for the info Inspired! You're a doll. XOXO
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Wonderful news Jen! Doing the happy dance for you!
Tobycc, As far as looking for cancer elsewhere, my MO ordered a PET scan after my TNBC diagnosis. He wanted to see if there were any mets. Did find nodes in my lungs which we are keeping an eye on. They did not light up like cancer cells.
Hope you are all doing well, hugs, lilyrose
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Here's an article on a drug that is advancing in clinical trials for TNBC....nice to see a little progress in the TNBC world.
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I know I'm posting a lot of articles lately, but I think they are really good. This one is written by an woman who has had breast cancer 4 times. At least two of them have been TNBC.
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Simple: I truly appreciate all your posts. Thanks for delivering such informative topics. That first article about Keytruda was interesting as it helped other types of cancer and has received accellerated approval in one class of cancer.
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The link to your survivor story is about Sharon Greene. Diagnosed at age 29 with TNBC BRCA1+ and it has now been 26 years for her as a Survivor! Before the 4th recurrence she had gone 16 years from the previous one. She mentioned being able to find these recurrences early and still contained in the breast. Just another important reminder to stay on schedule with mammogram or u/s or MRI ... whichever each person's survivorship protocol is.
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Simple=I enjoyed the link to Sharon Greene. What an unbelievable story. I do not know if I would have had the stamina and strength that she has. She is an inspiration and a true fighter,
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do you ever wish you could un-read something? Erase it from your memory? Like those bad google searches we've all done? Well I wish I didn't read Sharon greenes story about 4x with breast cancer. We all see things differently and that scared the shit out of me. That's all I can think about now, damn, trying to stop the roller coaster brain. My biggest fear (as for all if us) is recurrence or a new primary. One stupid stubborn cell left behind and bam. Bad choice for me to read going into a biopsy on Monday. Oh no
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Hi all! I joined the "TN" club on September 18, 2014. So far, I had a lumpectomy in October & will be starting chemo on Monday, December 16th. I'm planning on having a bilateral mastectomy after chemo.
About myself, I'm 42, newlywed (diagnosed 30 days before the wedding). We don't have kids yet, but we do have 4 frozen embryos waiting for us!
(That's why there was a time span between the surgery & chemo). My husband has been wonderful, as has my family and friends. It's really been an eye opener for me. Wow! I have a fantastic support system. To be honest, I'm scared to start chemo; I'm scared to hear "You have breast cancer," again.; I'm scared for my bilateral mastectomy this summer. Most of all, I'm scared that I'll never feel normal again.
I'm so glad that I found this group!
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fightergirl,
I'm glad you found us! I won't tell you not to be scared...because I'm sure you've read that we all are. It's not constant, though sometimes it feels that way and it will be over different things. Try being scared for one thing at a time. It's a little less overwhelming! You're next step is chemo, so focus on that. If there is already a starting chemo December 2014 group, join it...if not create one! Also look through some of the recent chemo groups. I was "lucky" to start chemo with a bunch of other ladies who were very active on this site. We kind of dragged each other through it!
Lastly, well...there is no lastly because you are working on focussing on one thing at a time! Lol
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Fightergirl, please check your PMs - I sent you something to your InBox. Until you get there, it looks like I had the same basic stats as you and I'll be at 3 years out Dec 27th. You can do this, and I'm so glad that you were able to retrieve the embryos. I didn't know that was even an option when I was dx'd, especially since I moved through the process so fast, otherwise we would have attempted the same thing.
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