Calling all TNs
Comments
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No, but I have heard of something called brachial plexopathy, can be due to rads.... could that be it?
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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.0 -
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.
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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.
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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
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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.
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moth, have you had MRI before?
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MountainMia, no, I haven't had a breast MRI yet, only mammograms. This will be my first.
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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.
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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.
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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.
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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.
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I do have a mammogram tomorrow but flipping out tonight.
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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.
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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!
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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% 😪
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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.
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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.
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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.
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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.
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thanks for letting us know Volleyballmom. Glad that it's good news and glad you followed up. None of this stuff is easy but you got up and you did it - all in the midst of grieving for your mom. You're a superstar. Be gentle with yourself
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I agree with Farfalle. I think the best thing to try to do is live a healthy and happy life.
Get your heart rate up every date by doing a little exercise. Drink little or no alcohol, eat a healthy rainbow diet with little or no meat and stay at a healthy weight. Enjoy the things you enjoy: family, friends, beauty, hobbies. That’s it.
As time goes on it gets easier. I was obsessed about my stats in early days. Now I try to live well, go straight to the doctor if I don’t feel well or have unexplained symptoms and have an annual mammogram. I try to notice and appreciate the small joys in life and enjoy the life I have for however long I will have it. Dealing with negative thoughts - I usually try to do something about them - work out whether there is anything I can do to improve things and maybe discuss them with sympathetic listeners and then ideally let the bad thoughts go. This sounds simple but it is not, it takes practice.
Reading this it sounds a bit like a sermon. I hope I’m not being preachy, I suppose I just want to say that having cancer is difficult and we all deal with things in different ways. Sharing here and seeing how other people handle thingscan help I hope.
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volleyballmom. Sorry about ur mom. Prayers
Hi all,👋 Ive been reading all the postings! Still done well ive got my 6month check up friday with CT scans, bloodwork the norm.. I can relate to breast tissue after rads changing so much that I question everything I notice. Hopefully one day I can relax.
Sending peaceful vibes..
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urdrago I hope things went well for you re scans!
I am feeling good at 11 mos PFC...
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Hi all, new here. Just want to say hello and hoping to find hope in this group when I start to feel sad. I’m typically very positive and keeping a great attitude but I’m not perfect and feel sad every now and then. I’ve had 2 rounds of AC so far and it has not been as bad as I expected. Actually pretty tolerable but I continue to work to keep my mind busy. I have a 5 and 2 year old daughters that also keep me plenty busy. Blessings and prayers to all struggling through this. Also, the internet searching doesn’t help at all!! So much negative in triple negative that I don’t want to focus on that just getting through my treatments and moving past this chapter of my life.
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Hi Janice. I am so sorry that you had to even come to this site!! BUT before I go on you need to know there is so much hope!!! My wife and best friend since we were teenagers was diagnosed with TNBC in late April. Did 4 AC’s and the 12 Taxols. After AC #3 her tumor could really not be felt any longer. We finished the 12 Taxols in October. Did the DMX 2 1/2 weeks ago. The pathology showed that there was a cPR and no sign of cancer. No nodal involvement. Praise our God!! My wife is BRCA2 so she will have her ovaries and Fallopian tubes out in February. There are many many more just like her. And many others who maybe didn’t have quite the cPR but with radiation they are or will be cancer free as well!! I know 2 young women close by who had a new born and one with a 2 yr old. They are 5 and 9 yrs out with TNBC!!! As you will be also. My Nat has a tremendous attitude, just like you, walked every day. Had one troublesome issue, whipped it and the cancer as well!!! You are 1/2 way done with AC!! On your way. One day at a time. You have got this. Trust your team. Ask questions and getter done. The internet sucks and scares the heck out of us but treatments have come a long way. May God bless you and yours!!
Jay
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Hi janice. Thanks for stopping by. I'm sorry you're here and understand your sadness and worry. I totally get that you don't want to feel negative all the time, and that you're usually very positive. But remember, it's totally okay to feel bad, too. You get to feel ALL the feels!!
I had AC x 4, and no other chemo. That makes me a bit of an outlier among chemo patients in general and tnbc chemo patients in particular. (Most follow it with taxol and/or other treatments.) But it wasn't terrible for me, either. I'm glad you're not finding it too bad.
Welcome. Feel free to comment here anytime, especially when you want more perspective on triple negative. It can be scary and overwhelming, and you can share your fears AND happy thoughts here.
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When I was first diagnosed with TNBC and scared, I came across this site. I’ve not contributed much but have been a follower. Since I found and still find that all the MANY survivor stories lift me up, I post this message to share that I was diagnosed over five years ago!! Mastectomy, chemo and radiation were my treatments. Life is mostly back to “normal” now. Lots of energy, lots of hair and gratitude. Hang in there and may God bless you.
denise0 -
Wow, thanks denise/neeciek. It is GREAT to hear survivor stories. Thanks for sharing yours.
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Hey - just passed my 1 year biopsaversary. I've got a slew of appointments and tests coming up in the next 2 weeks. Still have my tissue expanders in, which are uncomfortable, but my PS won't do the exchange until I've been done with Rads for at least 6 months.
Other than that, I need a haircut (!), have started working out again, and have managed to lose weight, but on purpose this time.
Haven't been on lately, but wanted to pop in to say the emotional healing process can be slow, but it does happen.
I have a much more relaxed attitude about work and life than I used to. Generally I don't get worked up about the small stuff, and generally, it's all small stuff.
Enjoy the upcoming holiday. Hug your friends and / or family!
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