Calling all TNs

jrominger

Sylvia I’m with Gamb, you are an inspiration. We are just done with chemo. DMX 11/5. Pathology will dictate rads. Hoping and praying there is no need for rads! Thank you for staying with us.

Chickadee, we are right with . My Natalie is BRCA2 positive. Her father passed away yesterday due to complications with pancreatic cancer. We finished 4 AC and 12 Taxols last week. We also be doing ovaries/fallopian tubes 2 months after breast stuff is done. Nat has a great attitude and hiked almost every day during chemo. Broken hearted over her dad but even more determined. God bless you and we’ll keep you in our prayers.

J

Gamb

God bless you and keep you and your wife jrominger, the true fighting spirit of love.

jrominger

Gamb. God bless you too!! Natalie and I have been best friends since teenagers. Going to keep this ball rolling by God’s Grace!! I’m with you, I love hearing TNBC survivor stories!! I know of so many. Even right here in my little town!! Let’s make it our story as well. We’ll chat together 10 then 20 yrs from now!! Praying for you!!!

santabarbarian

jrominger please give Nat have my condolences about her dad!

jrominger

you rock santabarbarian!! I will definitely let her know! Thank you. It was quite a shock. He was doing so well. Now we just need to heal and get ready for DMX!!

mightlybird01

I am so sorry for Nat to have lost her father. This must be a shock, on top of everything else going on. Bless him, that he waited to know she was safe on the other side of chemo.

MountainMia

Hi all. I'm wondering about follow-up care for TNBC early-stage, BRCA/gene-negative. While I went through treatment (lumpectomy, chemo, rads) I asked a number of times about what kind of appointment schedule I would have after done and who would order mammograms, etc. Didn't really get a clear answer on that. At my MO follow-up appt, I asked him how often I would see him. He told me that depended on what I wanted and I didn't have to see him at all if I don't have any issues. (He is a minimalist in general, so that answer didn't surprise me.) So we agreed on that. Soon I have first post-treatment follow-up with BS and RO. SOMEONE needs to be in charge, and I still don't know who it is or what kind of plan there will be.

Did you get a written survivorship care plan? Or did you get a clear understanding of it from your docs? Which of your docs is in charge of what? How often are you seeing them and for how long? Thanks for any insight.

santabarbarian

I see my MO or his PA 4 x a year. I see my BS once or twice per year. I get labs each time and an annual mammo. That's it. If I want I can get n MRI but it is up to me and my level of worry. I think I will get one so it is a 6 month stagger from my mammo. Luckily I feel very good so I am not worried but I do think it makes sense to have a peek every 6 months.

Farfalla6

hi

I am two months post last rads ( after lumpectomy and chemo) and I have appt in December with breast surgeon for exam and mammogram/Sono; I was told that based on that I would be placed on a 6 month or yearly diagnostic ( mammogram or mri or sono) schedule. All they said apart from that is “ live your life but let us know if you have a pain or symptom that lasts for more than two weeks". Which is terrifying. Like they're saying, live your life but remember you could get Mets any time...

I am exercising a ton, diet is better but not perfect, and I am already quite thin. So...who knows.

Joy777

Hi! Have you ever heard of hand wrist bone mets? I have a weird pain in my wrist, for no reason, I didn’t hit myself or something. Is it possible to be something bad or it’s just a pain?

Thanks.

santabarbarian

No, but I have heard of something called brachial plexopathy, can be due to rads.... could that be it?

moth

MountainMia - there are official breast cancer survivorship guidelines from ASCO

https://ascopubs.org/doi/pdf/10.1200/JCO.2015.64.3809

I don't think it has to be your MO - it could be your primary doctor (that's how it's done here: I've been discharged from the MO and my family doctor is undertaking all the surveillance). Realistically I think for those of us who are able, we're our own best advocates so it wouldn't hurt to keep track in our calendars and make sure to bug the doctors for referrals as required. Make sure you're being screened for other cancers, for heart disease (which is more likely to kill us than breast cancer) etc.

What my MO basically explained to me was that they don't go looking for mets because finding mets before they're symptomatic has not been proven to affect how long patients survive Which was depressing but it is what it is. All the screening is to catch a localized recurrence (or 2nd primary) or another health problem.

MountainMia

Thanks, moth. I'd found that ASCO guidelines set already but hadn't had a chance to dig through it. Here is what it says about screening for recurrence:

"History and physical Recommendation 1.1: It is recommended that primary care clinicians (a) should individualize clinical follow-up care provided to breast cancer survivors based on age, specific diagnosis, and treatment protocol and as recommended by the treating oncology team (LOE 5 2A); and (b) should make sure the patient receives a detailed cancer-related history and physical examination every 3 to 6 mo for the first 3 y after primary therapy, every 6-12 mo for the next 2 y, and annually thereafter (LOE 5 2A).

"Screening the breast for local recurrence or a new primary breast cancer Recommendation 1.2: It is recommended that primary care clinicians (a) should refer women who have received a unilateral mastectomy for annual mammography on the intact breast and, for those with lumpectomies, an annual mammography of both breasts (LOE 5 2A); and (b) should not refer for routine screening with MRI of the breast unless the patient meets high-risk criteria for increased breast cancer surveillance as per ACS guidelines (Saslow 200721; LOE 5 2A).

"Laboratory tests and imaging Recommendation 1.3: It is recommended that primary care clinicians should not offer routine laboratory tests or imaging, except mammography if indicated, for the detection of disease recurrence in the absence of symptoms (LOE 5 2A).

"Signs of recurrence Recommendation 1.4: It is recommended that primary care clinicians should educate and counsel all women about the signs and symptoms of local or regional recurrence (LOE 5 2A)."

The recommendations continue for a variety of other concerns. But all of them I'm noticing are focused on the primary care clinician. That's easy for me because my PCP is in the same hospital as my other docs and care. Not sure if it would work easily for many other people.

At this point, then, I guess I need to work with my PCP to agree on a schedule of visits for the next 3 years, and to get the first appointments scheduled.

LoveMyVizsla

I saw my BS once after each surgery. Saw my RO six months and maybe one year after rads. I see my MO once a year now, and her PA on the six months in between that year. At 5 years, I graduate to the women’s wellness clinic in the cancer care center. I’ll,hit my four year anniversary in December.

MountainMia

I wondered what is considered "high risk" and recommended for high-risk screening with MRI. I plugged this phrase into google: "high-risk criteria for increased breast cancer surveillance as per ACS guidelines" and found the American Cancer Society Guidelines for Breast Screening with MRI as an Adjunct to Mammography. Note that it was published in 2007 and apparently not updated since then, which I find surprising. If you have dense breasts and/or a personal history of breast cancer, there is neither a recommendation for or against use of MRI. More recent research I've seen (and don't have at hand now) claimed that the number of false positives with MRI and the follow-up testing because of that doesn't make it cost effective for screening. Anyway, here are the guidelines.

https://onlinelibrary.wiley.com/doi/full/10.3322/canjclin.57.2.75#tbl1

moth

Yeah, I've been going back & forth over the MRI thing. My MO booked me for one in Dec, exactly 2 years post surgery.

After that I think the doctors are suggesting diagnostic mammo ( + possibly ultrasound?) annually. I'm still considering whether to pay out of pocket for an MRI at the 6 month mark in between the mammos. I can't decide if it's me being paranoid or prudent.

MountainMia

moth, have you had MRI before?

moth

MountainMia, no, I haven't had a breast MRI yet, only mammograms. This will be my first.

santabarbarian

My followup #3 is today. I think I am going to ask to schedule a MRI for December (6 mos after my mammo). I think it is sensible to take a peek, so if anything gets going it does not have a year to take hold and spread. I am not scared of there being any C there, but I think it is prudent to take a look and be ahead of the curve if there is a problem.

VL22

Ahhh - the MRI. At first my doctors said they would rotate that with the mammogram. Then, before surgery I got an MRI and it royally forked everything up. Two false positives that pushed my surgery date back two weeks. It caused more stress than you can imagine. Had to get an additional biopsy and a bone scan. I guess after that fiasco they quietly took it off the table.

Just be ready for an MRI to reveal thingsthat really aren’t there. I think if I was better prepared I wouldn’t have been so freaked out.

Volleyballmom2008

Hi ladies. I haven't been on in awhile. Had a good mamo in July and then unfortunately my mom got sick and passed 3 weeks ago. But I am now freaking out. I have had this thick patch of skin under my right breast the one o had idc in for about a month. If I rub it it goes flat, it is not read bit looks dimpled. I of course googled and now am afraid I have ibc. Anyone else have any kind of skin issues. My breast is still a little larger then my other one also. I have read about fat necrosis but with all my bad luck lately I am flipping. Any advice.

MountainMia

Volleyballmom, I'm so sorry about your mother's death. I wish you many blessings and happy tears as you remember her.

Advice: please see your doctor. It might be "normal" skin weirdness, but you'll feel better if you find out for sure.

Volleyballmom2008

I do have a mammogram tomorrow but flipping out tonight.

moth

Hi Volleyballmom, hang in there. It's scary but you've got this. You're doing the right things, get your mammo, see your dr (because skin stuff won't necessarily show) and wait till you have answers.

santabarbarian

I had some puffy skin that was rads related. I knew because it stopped exactly where the rads burn stopped. It could be many things, hopefully a not serious one!

Dee1987

farfalla6 I was operated in Milan and went to see a triple negative expert after as I had a few bumps on the road with my treatment and according to his studies I had 92/3% of survival ( studies are still ongoing). We have similar stats 1.5cm node neg and lvi absent. I never asked for statistics as I prefer not knowing but my partner was concerned and asked. Seeing how I’ve never been a lucky person I still feel like I will fall in that 7/8% 😪

VL22

Dee1987 - that’s the rub isn’t it? Despite the stats that are in our favor, we will still stress about it because someone is that 7-8%. And obviously, I don’t want it to be me, but I don’t want it to be you or anyone else either! It is just a such a sh&$ty disease.

Farfalla6

thanks for posting this. And yes, the odds game is so complicated. For every particularly person, either you're going to recur or you're not. It can always happen. My mood goes up and down about this. I did investigate one thing further: I know there is more recent data showing that a high percentage of tumor infiltrating lymphocytes is a good prognostic sign; its a sign that the immune system has noticed and responded to the tumor. And I know I had a very high percentage of these. So I kind of hang on to that as well.

Volleyballmom2008

Good morning ladies. Thank you for your support. I had a mamo and sono and exam by my bs. All is fine. I have skin thickening from radiation. I guess this will be life as we know it now. Constant worry.

anotherNYCGirl

Volleyballmom, - Thank you for posting your update! I am so glad that you can breathe a sigh of relief now. I am very sorry about your Mom. Sending hugs.