Calling all TNs
Comments
-
Valstim52: Sheesh indeed! that sounds like a bum rap to me!! i think you have every right to feel what you do. I have several chronic health issues coming into cancer, so sort of, a little bit understand the feeling of being bombarded. Hopefully with the BMX this time and other supportive /destructive chemo and rads you are beating this! Hope you can not be a slave to fear! This IS super scary, but try not to let it steal your joy.
0 -
huzzah needs to be our groups happy word indeed.
Cathy I had negative nodes and clear margins and did rads. My ro said that it was good to have that added treatment. Other than rads seeming like the movie Groundhog Day it did go by quick despite some nasty skin breakdown the last week due to my larger breast size.
Labscientist i also got one of those cards from good wishes scarves. I really made me feel great.
Congrats to scotbird
kelly hugs to you. As tulips said it may be a good thing to get the extra insurance treatment. It sucks but it sounds like you have a good medical team. Like you my mom had bc and my grandmom, but not tn. Both dx at 69 and I was 44 at dx last year. I also tested brca negative. I wondered for the past year where the heck did my cancer come from. I am trying to take my second chance and do good in my like. I have lost 55 lbs since finishing chemo, am eating clean, working out, and trying to reduce my stress which can be a challenge. What helps a lot post treatment is reading this board and knowing I am not alone. Stay strong ladies. And happy Father's Day to all.
0 -
Cathytoo, I truly feel if I'd not had radiation 24 years ago, with my tiny tumor, clear everything, that I would have advanced to metastasis. Just my feeling, and my MO team at the time words to me. They really helped me to understand, clear nodes do not necessarily mean that there are not microscopic cells waiting to float or grow. And that was 24 years ago before we had all this technology. Radiation is used to mop up or stop the movement from the local area, which includes the chest and neck nodes.
My kids were 3,5,7. They will be 29, 31,33 this year.
This time, due to clear margins, my radiation is added insurance for the what if and just in case that happens in cancer. Additionally since I had IBC and tumors, it's the standard protocol. So many terms they use now, that were not used before, PCR, partial PCR, Then they either got it by surgery or not. Period. chemo was used to shrink, was never expected to get rid of it all. Things have improved, but it's made my personal fear worse.
Just my experience and opinion with radiation. Last time it was a blur, ,my skin got really pink, put cream on, but I had homework to help with a husband that traveled for work, had to be PTA mom etc. A true blur and it was over.
labscientistmom, It's like the big things did not bother me as much, but something chronic and small sends me over the edge. Not fear so much as what else will I have to deal with.
0 -
Regarding radiation: My MO and RO told me I didn't need radiation because I had clear nodes. After reading everything I sure wish I would've gotten it!!!Can't go back now though.
0 -
Valstim52: I do know what you are talking about...sometimes the little things are like Chinese water torture. You feel like you have all the big stuff balanced, but plink, plink, pplliinnkk. If I am not laughing at it, I am crying my eyes out. and so much of the little stuff is just weird....you can't make this stuff up. Blessings, hope you have a nice Father's day Sunday!
0 -
Thank you ladies so much for the very kind comments.
Jen - I'm so happy to hear you're feeling settled and enjoying your new home!
Valstim - I was like you, losing my eyelashes and eyebrows was harder than my hair.
QueenKong - huge congrats on 3 years! Thanks for checking in and providing us with such encouragement.
Adarkadapted - congrats to you on the year milestone!
Hopex - 4 years...congratulations! And how special you were able to meet up with your chemo group in Vegas!! What a wonderful and memorable trip that must have been!
Kelly - my aunt is currently on her last round of Carbo for ovarian cancer. She had one round of Taxol in the beginning, but due to an allergic reaction she's been solely on Carbo since. She has not lost her hair. She said she's noticing a smidge more in her brush, but no hair loss to speak of. This is my aunt's 4th cancer fight, 3 of which have included chemo. She is 74. She said Carbo is a breeze compared to the others. She's a little tired, but that's it. I also did Carbo along with ACT, as I was BRCA+. I believed it helped me achieve a pCR, but I can never say for certain.
NavyMom - so great to hear from you! Glad you're doing so well!
Labscientist - what a nice card!
Thinking of all of you in treatment. Stay strong!
Sending well wishes to all of you celebrating milestones and enjoying life!
xo
0 -
KSteve - Thanks for the encouragement. I've been pretty happy with how quickly my hair's growing back. I'm just starting to get some curliness. I have a feeling it's going to get unruly here pretty soon.
Shop gal - Congrats on the 55 lbs! That's awesome! My MO and my PS want me to lose 20 lbs. I'd personally like to lose more like 30.
Allydp, that's good to hear that your aunt's dealing with the Carbo well. She has been through a lot! I sure wish my doctor had gone ahead and given it to me with the Taxol, but I'm trying not to dwell on that. I was really down in the dumps yesterday. I've made it through all of my treatments/surgery so far with a pretty good attitude and outlook on things, and I feel like I was thrown a curveball that I wasn't expecting on Friday. I'm doing a bit better today. It doesn't help that I'm 2.5 weeks post surgery and still have these stupid drains in. I should be getting them out tomorrow (fingers crossed!), and I think I'll be a much happier person.
0 -
Hang in there Kelly, it's almost done. Those drains are miserable!!!! But they do there job. I have a love/hate relationship with them as I'm sure you do as well. Thank you for being on this thread. I know that you came here for encouragement but I'm believing that your story will also encourage others in their storm. Healing prayers, hugs & love headed your way.
0 -
Thanks so much, SA8PG! That was really sweet. Dumb drains aren't coming out today, unfortunately. I woke up this morning, and they had much more output than the few days prior. My doctor told me to be as sedentary as possible today, and we're going to try again for tomorrow. My kids came back home on Friday (3 and 6 year olds) after 2.5 weeks with grandparents, so I was much more active over the weekend than I have been and probably overdid it. They're in VBS and camp all week, so I'm relaxing and trying to just enjoy peace and quiet. I'm just going to have to keep relying on my husband and family to do the things that I'm used to doing for a little bit longer. It's really hard for me to relinquish those duties! Of course reading your signature, I have it easy compared to you! I can't imagine the level of kid responsibility that you have.
0 -
One year down!! I have no idea where the last year went, but I do have a fine collection of souvenirs/scars.
Thanks to everyone on these forums forthe support, laughs and my sanity. You are the only ones who really know.
Hugs all round!
0 -
Peabrain: thanks for putting in some hope! Huzzah for your first year anniversary with your battle with cancer. Whoot, whoot!
0 -
*HUGE HUGS*Peabrain!!!
Allydp: thank you for the shout-out!
0 -
Lots of great news going up on here! Plus a good news war cry has been created. My wife had her regularly scheduled Oncologist appointment today. Very uneventful...just like we like em! Huzzah!
0 -
HUZZAH Peabrain, andn Alhusband. Great news.
0 -
ditto! Huzzah Pea and lovely wife of Al!
0 -
Peabrain congrats on 1 year!!!! I think we should all have a good Mediviel Times shout out. LOL Huzzah!!!!! as we raise our glasses. So happy for your wife too Al.
)0 -
Ugh... I'm being a bad breast cancer survivor... Haven't made my follow up doctor appointments... I just don't wanna! I know, I should, but I am enjoying life and every time I have to schedule a doctor appointment I relive some really miserable anxieties...
OK, so, follow up appointment is scheduled - BLAH! Silly, I know and best to follow up, I know. Anyone else have the same dreaded feeling making appointments?
0 -
Curly I am 100% with you. My oncologist always does blood work at my follow ups even though my blood work never showed my tumor. Numbers were allways normal. Since I have to take my children with me to every appointment since I homeschool,I am going every 6 months instead of 3 (I'll be 2 years out in August and it looks like your going on 3) but obviously if I get any aches etc for longer than 2 weeks I need to get in sooner. I know it's important to follow up and stay on top of this
Lots of hugs,
G
0 -
happy huzzahs to peabrain on your 1yr. I had to smile on the fine collection of scars comment. True.And al husband great news indeed.
Curly I dread even regular Drs appts now too. I went to my Gyn 2 weeks ago and had a mini panic attack when the nurse measured my 1 inch shorter and my Gyn said I shrank an inch and needed a bone scan because I was a cancer pt. Wtf I thought. I told him his nurse measured me wrong. Today went to my primary and my height was fine, no shrinkage. Duh.
0 -
Hi Tulips,
My sister(no breast cancer) just tested positive for the RAD50 gene also. My genetic test did not include that gene so I will be getting retested. I am TNBC and have 2 sisters with breast cancer(one passed away from breast cancer). We are 6 sisters with 3/6 having breast cancer. We have all tested negative to BRCA1/2. Maybe there is something to the gene RAD50. It's not always included on genetic testing and my panel had many genes tested but not that one. Now that my sister tested positive they will retest me for that gene.
I haven't been on here for a few weeks and my sister just got her results last week. It was meant that I go on here today and see your post.
Thanks, Janice
0 -
Hi Triplegirl,
Yes, what timing to catch my message re. RAD50!
My understanding is that they have figured out that RAD50 is a gene on which certain mutations definitely increase the likelihood of getting breast cancer. However, there are lots of possible mutations on this one gene. Some of the mutations are definitely harmful. Some, they haven't figured out yet if they are or are not. My particular mutation on RAD50 isn't yet proven to be harmful or harmless. They are calling my mutation "likely benign" but I just have a feeling it will prove to harmful. Did they say anything specific about your sister's mutation?
Overall, I think they are calling RAD50 an intermediate risk gene. BRCA gene mutations can increase a person's likelihood of BC by 50-90%. I think the intermediate risk genes increase your likelihood by 25%-40%. So harmful mutations on RAD50 increase your risk, but far from guarantee that you will get BC.
I haven't had my ovaries out. Once I get through all this BC stuff, I want to look into my mutation again. It's been over a year since I was tested. They are supposed to contact me if more info comes out about my mutation, but I will definitely look into it. Then, if it proves harmful, I will have to wonder about mastectomy & oophorectomy. But for now, I'm focused on my current BC treatment.
Good luck to everyone...I hope everyone is enjoying this gorgeous summer weekend!!!
Tulips
0 -
Hi Tulips,
My sister just got her results back and is waiting until August to talk with the geneticists. She is waiting until then as she is taking care of me during my double mastectomy which is July 11th. They will retest me later at the end of this year after I'm all done with my reconstruction. I'm also just focusing on my Breast cancer for now....that's enough for sure.
My dr.(surgeon) seems to think it's a bit higher risk and of course mentioned ovarian since I already have TNBC.
Just exhausted from all of this.
Hope you are doing well, Janice
0 -
Hi Cathy,
I am planning on not doing radiation due to the risks and the fact that my tumor is in my left breast which is of course over my heart. I also am having a double mastectomy with clean margins. I know for lumpectomies they say to always do radiation.
That being said my surgeon is going to go to the board and discuss my case. My surgery is scheduled for July 11th. I know my reconstructive surgeon also doesn't want to have radiation done as it will affect the outcome of my surgery.
I'll not say never but right now I don't plan on it unless they give me a great reason.
Janice
0 -
Hi Yodez,
They never tested me for the Ki67 so I don't know what mine was. It sounds like they are doing all of the right things but it's always good to get a second opinion. I had chemo first....one left to go....and surgery July 11th.
Janice
0 -
Sorry ladies I have taken so long to post on here but my sister-in-law was in ICU for 3-4 months and unfortunately passed June 14th from breast cancer that had metastasized to her lungs, liver, and bone. Dealing with all that has been overwhelming.
I go in for my cat scan August 12th to see if the ill-defined sub 4mm pulmonary node has changed. I get the results on August 19th. Thank you all for trying to allay my fears about that, it is better to hear it from one who has been through similar things. I am keeping positive and keeping busy. Monday will be my 44th birthday and I am so very blessed and grateful to be celebrating it healthy and whole.
Thank you for all your continued support
0 -
So sorry for your loss. I lost my mother to IBC 12 years ago. It hurts.
0 -
Rhiannon: it is like coming up for air after being under water for a while. I lost my sister to IDC BC two 1/2 years ago, and I really miss her still. Its so hard to say goodbye. Sorry for your loss, healing and grace to you as you figure out a new normal.
0 -
So sorry for your losses, especially having bc yourself and watching someone you love die from this disease.
val
0 -
sorry for your loss Rhiannon 426.
0 -
Unfortunately I am no stranger to this, my own sister passed away 14 years agofrom breast cancer that had spread to her brain, liver, and bones. She was 32 and left behind a husband and three little boys 10, 5, & 3. My Mother is a 36 year breast cancer survivor. She and my sister tested positive for the BRAC2 gene I tested negative. After I was diagnosed they wanted me to test for both BRAC1 and BRAC2 again. Again I tested negative. So this time I was able to be there for my DH and his family. It was very hard to watch though. Thank you all for your condolences.
0
