Calling all TNs

ALHusband

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!

Valstim52

HUZZAH Peabrain, andn Alhusband. Great news.

Meadow

ditto! Huzzah Pea and lovely wife of Al!

SA8PG

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. )

Curlyq1974

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?

SA8PG

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

Shopgal2

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.

Triplegirl

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

TulipsAndDaffodils

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

Triplegirl

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

Triplegirl

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

Triplegirl

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

Rhiannon426

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

Milwmama

So sorry for your loss. I lost my mother to IBC 12 years ago. It hurts.

labscientistmom

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.

Valstim52

So sorry for your losses, especially having bc yourself and watching someone you love die from this disease.

val

blamoms

sorry for your loss Rhiannon 426.

Rhiannon426

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.

SA8PG

Rhiannon I'm so very sorry for all the personal losses your family has had because of this disease. My thoughts, love & prayers are with you for your scan in August. I pray that tomorrow you have a wonderful, full & blessed birthday. You certainly deserve it!!!!! Happy happy Birthday!!!!

Hugs,

Kayrem

Hi everyone. I am sorry to hear about your loss Rhiannon. This is such a horrible disease.

Happy 44th Birthday Rhiannon! You will have many more!! Take a deep breath and do something special for yourself today.

I just wanted to let you ladies know that I have hit the 5 year mark since diagnosis.The first year was hard and an adjustment but the last 4 have been pretty great! My kids were finishing preschool and grade 1 when all this started and now they are entering grade 5 and grade 8. My 10 year old daughter is almost as tall as me!

This is definitely a game changer in your life (at least it was for me). I am more interested in living for the moment and less willing to wait on enjoying things in life. Take care ladies and keep the faith that you will get through this! Before you know it you all will be posting your five year mark on this thread! Karen

Allydp

Rhiannon - I am so very very sorry for your loss. My heart, love and prayers go out to you and your family.

Karen - congratulation to you on the huge 5 year milestone. Huzzah!

Curly - You're not alone...I cancelled my last follow up! I just couldn't do it. It creates so much stress for me...just for them to ask how I'm feeling and me to say fine and be on my way. If I had a symptom of any kind, I would've gone, but I've had so many scans in the last couple years, I figured skipping this one 3 months follow up wouldn't hurt. So then I go to refill my script for my little ole Levothyroxine thyroid med with my PCP a few weeks later and they tell me they won't fill it until I have bloodwork and a physical, which was a first. Couldn't help but feel that was God's way of having me seen one way or another lol. And wouldn't ya know...for the first time in my life my cholesterol has ticked up over borderline. I've actually been eating fairly healthy and lost 10 pounds so what the heck?!

I'm blaming menopause. That's my excuse for pretty much everything these days.

Shopgal2

Rhiannon so sorry for your loss. Cancer sucks. Huge hugs to you.

Kayrem congrats on hitting the 5 year mark. That's a big milestone.

anotherNYCGirl

Rhiannon, I join the others sending sympathy and hugs.

Kayrem, - Always great to read of 5 year marks!

BE WELL wishes to all!

Rhiannon426

Thank you all for your condolences and well wishes.

Kayrem congrats on reaching the 5 year mark!

Thank you all for just being there for me to sound out my fears....only someone who has gone through or is going through it truly understands.

Valstim52

Kayrem congrats on 5 years.

Curlyq1974

Ally - the cholesterol! I have the same thing! I eat well, never had any issues with it before and now wham! I too am blaming menopause - but how ironic!

yodez75

Hi all!

Since I am TN, is there a good chance I will have to do rads? I had total left mx on 6/21, negative nodes, tumor 4.5 cm. From most of the posts on this page it sounds like rads is pretty standard for TN's. Thanks!

avmom

Yodez, my TN IDC was 4.5 cm with negative nodes and I did not have rads. I did have good margins and did dose dense AC followed by dose dense paclitaxel. Even with a huge (8 x 8 x 3.5) bed of DCIS, the RO's opinion was that the risks associated with rads outweighed the potential benefits - only about a 5% reduction in recurrence risk for me

LoveMyVizsla

avmom, I wonder what they would have said if you had a lumpectomy and not mastectomy. They would probably have recommended rads.

avmom

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Lovemyviszla, there is no question that rads would have been done if I had a lumpectomy. I'm not sure that being TN or not would have mattered. My understanding from my MO is that, if you have invasive disease, the standard of care is to treat the whole breast. Lumpectomy plus rads, or mastectomy. Radiation is a local/regional treatment and can be indicated if there is any indication of disease in the lymph nodes. That said, I think there has been some research published since my treatment last year that suggests that mastectomy plus radiation could be of benefit if there is any lymphovascular invasion, whether or not anything shows up in the lymph nodes themselves.

As with everything here in cancerland, no treatment option is "free". Every choice is fraught - some potential benefits, some risks that may or may not affect you individually, and always having to decide in the face of uncertainty. If you don't have a recurrence, you will never know whether your treatment plan was just right, or if you "over treated" - not great if you have severe and permanent side effects that reduce your QOL. On the other hand, if you do have a recurrence, can you be comfortable with the treatment choices you made? It is so personal, how we each deal with risk. For me, if the RO had said that the potential benefit was even a tiny bit greater than the risk, I would probably gone for it, but I would have dreaded it every step of the way. I'm pretty risk averse and if I recur I am sure I would regret turning down any recommended treatment. Others can and do react differently, and I don't think there is any universal "right" answer. Ultimately, we all live with our treatment choices individually, so even going through the process is a voyage of self discovery.