Calling all TNs
Comments
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Thank you for easing my mind. And for the great advice! Did you have those scans right after your last treatment? My issue is, she acted like I didn’t need any scans other than the chest, and now all of a sudden I am scheduled for multiple. I will call her tomorrow, but thought it was strange when I looked At my mychart. I’ll take all the scans, it’ll ease my mind even more, I just am caught off guard by it.
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Easymac, I know this is a hard decision but really, I think you should be fine going both ways. I would recommend to just make a decision and stick with it. I know easier said than done but don't overthink it too much, either way will be fine.
My diagnosis was very similar to yours. You did not say what breast size you have. I have/had very small breasts (<A cup) and I decided for mastectomy. Also, not having rads was important to me. I am unilateral flat now and have zero regrets. Recovery from unilateral MX with small breasts is very easy. The skin is a bit sensitive for some extended time (around 5 months maybe), but honestly, I was back to do everything on my horse farm with lots of physical activity within 6 weeks. I have no more mammograms to deal with in that cancer breast, a huge plus too for me. And only the first two weeks after surgery I really tried to not lift anything. I think I was lucky though and if you have large breasts both the surgery is maybe more involved and being unilateral flat is maybe not such a good idea. If you choose mastectomy, you have to know how you feel about reconstruction. I for once absolutely did NOT want any form of reconstruction. I wanted one simple surgery and being done and out of cancer land. My breast surgeon made a esthetic flat closer that looks amazing. I honestly don't mind looking at my half flat chest at all. I am 51 and you are much younger, so that is another fact to consider.
All the best!
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Spalermo111- I had Ct scan and bone scan done a month before chemo, I was in bad shape with my cancer breast, nodes, clavicle area, and arm swollen big time, advanced locally. They wanted to make sure it hadn't spread elsewhere. Everything came back clear, so that really does ease the mind. I had a MRI a week before chemo and then 4 months later. Keep us posted on your scans.
mightlybird- I am having a bilateral mastectomy with flat closure mid July. How long did you have drains?
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NatureYogi, my drains were in for 9 days. They were supposed to be in for 12, or until they leaked less than a certain amount of fluid (I forgot the actual amount), but after 9 days the output was so low that they took them out. I never had a bruise. Those 9 days were not fun, mainly due to the drains. After that everything went uphill real quickly.
I refrained from doing any arm exercises while drains were in. But started the day after. I did a lot of walking during the first 9 days. The gentle rocking of the arms during walking I think is good, but at least I was told not to move my arm too much as that could increase drain output. There is a lot of different advice out there on what exactly to do after surgery. Some people start arm exercises the day after surgery, but I followed my Dr. instructions not to do that and waited until the drains were out.
These were the exercises I did after the drains came out. I did one routine in the AM and one in the PM. Maybe you can try them once before your surgery that will help you know what your range of motion was before.
Stretching exercises:
https://www.youtube.com/watch?v=CPw2Me1jUCc
https://www.mskcc.org/videos/exercises-after-breast-surgery-without-reconstruction
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I was TNBC grade 3 3cm tumor with 2 lymph nodes. I did chemo first, then had partial mastectomy, (lumpectomy), with reconstruction on both breasts to match. Did many weeks radiation after. Almost 2 years NED. Marta
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Proton Rads are not what you described, that's 'dose dense' version of regular rads. Protons is a whole different machine.
I just had my 3 year Mammo an hour ago. As I am 3 years into this wait-for-results crap, I am much more proactive about things now! I asked tech: "how's it look?" and she said "the same as last year." Not an official read but I was very happy to hear that.
Regarding diet... I did change my diet quite a bit and have loosened up a little but mostly sticking to it. I basically eat "whole foods vegan" mostly veggies, nuts & legumes, very little processed anything, w/ a little bit of fish/dairy/eggs. Gave up alcohol. Don't miss it. Low on sugar. I do pilates 3x a week on zoom and hike once or twice. I feel great and I dropped about 20 lbs from pre cancer.
I had some former old lady aches and pains, that went away on this anti-inflammation anti cancer diet. So I feel better on it.
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Martaj I am happy you continue to be well!
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hey spalermo! I found some great things this week as I researched. Just found this...
https://www.youareherecommunity.com/
Which seems promising for health related topics.
But yesterday I listened to a bunch of podcasts that were helpful, and there are a ton more on health. If you search survivingbreastcancer.org for the podcast "breast cancer conversations". Such great content. Listened on triple negative, radiation ones so far.
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mightlybird... thnk you so much! Yeah, good point. It seems I'm about a b cup now maybe. I was nursing when I started all this, and I haven't returned to pre nursing bras yet. Figured I'd wait til I decide if ill have books or not.
I am 100 percent sure I want esthetic flat closure as well. I was thinking double mastectomy for safety since I have dense breast tissue (c grade on density). I'd like to be even for ease. Aside from a birthmark ill miss and feeling bad for my sweet husband, don't mind not having breasts. He is okay with it just not jazzed. 🙂
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Hello everyone,
I am not too sure if I am allowed to post here since I am just a caregiver - please forgive me if it is against the rules. My wife is battling TNBC at 23 years old. 3 cm tumor with 7 lymph nodes involved. She is completing her final round of AC tomorrow. I post sometimes on Reddit but I figured I would come here since it is more targeted to TNBC fighters. I really just wanted to vent. I am so scared. I have fought to keep her safe for the 5 years we have been together. My heart is crushed that I can't do anything to keep her safe right now. I worked so hard to give her everything she deserves and than her diagnosis 2 months ago was devastating. I just want her to not be afraid again. Hearing happy stories like the ones on this forum are a relief. So much has changed in the past 10 years for treatment alone. I read on a Facebook group about a 30 year TNBC survivor.
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Hi Dkp1994.
So sorry to hear about your wife and you having to face this. I know that my partner was just as devastated when I was diagnosed with TNBC. He was with me every step of the way and it really helped. Thank goodness that your wife is almost done with AC. AC is tough and for me it got easier after AC. Hopefully, it will be the same for your wife. Wishing you and your wife all the best
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dkp1994
So sorry to hear about your wife's diagnosis, but as you said, so much has changed and so much more is known about how to treat BC. I too found that treatment following AC was more tolerable. I hope the same holds true for your wife. She is certainly blessed to have you! You are definitely in the right place for support. Praying for all the best.
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Hello Spalermo111,
I just finished the same exact regiment you described this week and not getting the same scans you are describing. On July 9th I will be getting a regular mammogram along with a ultra sound mammogram and MRI. I am not your age I am 64 and I can only understand what your going through with having small children and dealing with this. I also understand the eating healthy and exercising stress you are talking about. Do the best you can and try not to worry to much it will make you crazy believe me I know. My daughter had to bring me back down to earth on this one, thank God for her!! You can only control so much in your life and stress is not good when it comes to bc. You have to take this one day at a time, one week at a time and one year at a time. We are going to be fine and do the best we can. Don't beat yourself up for having some fun you deserve it, look what you have been through so far and you did it!!
kelaine
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dkp,
So sorry you are here, and that your wife is in this situation! You are welcome to be in this group.
The major 'silver lining' of TNBC is the longer you go after treatment, the less likely recurrence becomes. At 5 years out recurrence drops to nearly zero. That's unique among breast cancers.
Your wife is so young-- few people your own age confronting this kind of illness. There is a thread on this site called "young with breastcancer" -- ppl under 30 or so-- that might be one to check out for support too.
I'm not the only "large tumor, several nodes" TNBC person on this thread who got a great response to treatment! :-) so make sure your wife knows her cancer is beatable!!
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I am 51 years old and just received my pathology reports. I have benign fibroadenomatous changes on the left.
On the right side is Invasive ductal carcinoma with apocrine features (what does that even mean?) and ER, PR and HER2 negative. Ugh, the triple negative! Also says moderately differentiated (does that mean grade 2?) with perineural invasion (does that mean more aggressive?). I see the surgeon on Tuesday, 7/14/21, and the Oncologist on the 21st. Sigh. I'm freaking out at the amount I don't understand about my future treatment. I still haven't told my kids--I'll wait until I talk to my surgeon.
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Hi Chirodani,
Like you, I was 51 when I had my diagnosis of invasive ductal carcinoma (IDC). I can't tell you what those terms you're asking about mean in your situation, but your doctors certainly will! In the meantime, you can look up general definitions here on breastcancer.org. It has a TON of information to get you where you need to understand what the doctors are going to tell you about your particular diagnosis. You've got the right idea already: ASK QUESTIONS! Just be careful of where you're getting the answers. But the more you educate yourself, the fear of the unknown will lessen, and you'll make the best decisions for yourself, your family, and your future. And come back here for support!
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PiperKay, thank you! This website is so amazing as are all of you wonderful people on it! I am digging in to all of the topics and felt so prepared for my visit with my surgeon! I will continue to ask questions, thank you! I sometimes hesitate to post but y'all have been through it and are so kind to answer my newbie questions!
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hi Chirodani, I was dx-ed around the same age. Was so worried to tell my kids. They already knew something was wrong. Lots of docs visits they notice. They are smart & aware. It was hard to tell them, broke my heart, our kids all deserve a healthy mom. but much better now. They are very supportive. No asking 2x to take garbage out lol. Sweet angels will be there for you. You will feel much better once treatment plan is in place. You can do it!
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Thank you so much!! After I saw my surgeon on the 13th I felt more comfortable telling them since I knew the plan (for the most part--still waiting on the genetic tests). They were amazing! A little mad because I had waited so long to tell them but they were happy I had answers for most of their questions. Luckily our family has a sick sense of humor so by the end of it we were joking about everything! That being said I have offered to make them appointments with their therapists (that they got during Covid) but they said they are ok for now. I told them that offer stands for whenever they need someone else to talk to.
Thank you for your encouragement and for sharing your experience with me! Wishing you the best!
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So glad you are feeling better about the situation, especially with your family, Chirodani. Like you, I held off telling my parents and siblings until I had answers to the questions I knew they'd ask. Made me feel more in control, which we all have so little of... Best of luck with what's to come!
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Thank you!!
I'm hoping to have the results back from the genetic tests next week and then I'm ready for the next steps!
Wishing you continued health and happiness!
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Dkp1994 - It is scary! This group is awesome and the best one I've ever seen. You will find great people on this site and you'll be welcomed to post. The information here is wonderful. The folks here really care about what you're going through and will give you the support you need to help you as well as her! I have the Bracca gene (BRCA 2 positive). Being that your wife is so young, she may want to highly consider being checked to see if she carries this predisposition.
By the way, I'm going on 11 years out now. I've had a couple of scares, but they were just that... no other cancer. I take lots of vitamins... especially more D3 than needed, Magnesium, K2 MK4 and MK7, etc. You want to keep your D3 levels higher than the normal population.
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Hi everyone,
I’m Nikki and I’m 38. In early June I felt a plum size lump in my left breast. I immediately thought it was a cyst, but when it didn’t go away, and because of prompting by friends, I went to my GP. She seemed immediately concerned, which of course sent me into a tailspin. She sent me to a breast clinic in Rochester, NY (just an hour from where I live). There I had a mammogram, ultrasound, and biopsy. The next day, July 13, the radiologist confirmed it was IDC, 4.5cm and after testing, it came back triple negative.
Last week I had a breast MRI, that showed nothing else but the area we knew about.
Tomorrow I meet with the BS and I wish I could adequately describe my emotional state. I’m sure it’s something you all remember upon your diagnosis. This feeling of, can I have a few more years? I’m not ready to leave my life just yet.
I’ve read that once I have a plan in place, some of those anxieties will go away, but right now, they are suffocating. I have wonderful friends and family, but I’m just scared. And sad.
I’m hoping that after I meet with the BS tomorrow, I will start to feel more like myself. Right now, every time I feel anything I imagine it’s cancer taking over my body. I do have moments of positivity and strength, but these past few days have been so tough.
Thank you to everyone here sharing your stories. I’m trying to hang on to your optimism and spirit
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Ntlw12.... Breathe.... exhale... breathe again... repeat. This IS scary, regardless of whether you've gone through it before or not... it can be a crippling sense of fear. Everything you're feeling is normal. I wish that helped to know it, but I know it doesn't ... not like you'd like it to help. It is SO hard to begin with. I remember all I did was cry and read... didn't feel like sleeping or eating. I was a mess! The women here were wonderful to help bring me back down to earth. I think the waiting game is the hardest. When you're actively getting it OUT of you, it helps. Dreading what is to come and not knowing what to expect is really hard! The good news is, it sounds like you're moving at a pretty fast clip with everything and you should find out a lot tomorrow. Have your list of questions on paper. Take a small recorder with you, or use your cell phone to record (I put mine on video and use it to record). There are MANY women here who are Triple Negative, and even more out in the world who don't come here. The ones of us who have battled cancer and gone on with our lives often don't visit these sites too much. Others will continue staying to encourage those just coming on. Are they going to test you for BRCA? I would encourage that. I was 42 and tested positive for BRCA which was shocking also... no one in my family has had breast cancer. That was almost 11 years ago. It does get easier. In the meantime, try your best to relax as much as you can... try to eat and drink lots of water... get some sleep... everything is so much worse when you're exhausted. Once you have a game plan, and begin actively kicking cancer in the A$$, the anxiety will become more manageable. I also found taking Tylenol and/or Ibuprofen staggered helped take the edge off. I remember the feeling you're going through.... all too well. Hang in there... praying for you to have strength and clarity. Thinking positive WILL help... remember the brain is a very powerful tool... but it's hard when your world seems to be crumbling.
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Fresh from the FDA
FDA approves pembrolizumab for pts with high-risk early stage TNBC based on DFS improvement seen in KN-522
https://www.merck.com/news/fda-approves-keytruda-p...
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@CC4NPG You we’re so right I met my surgeon yesterday and she is phenomenal. She said she has seen many cases of women around my age with the same diagnosis that have gone on to live full lives. I meet the oncologist tomorrow, but know that I will have 6 weeks of dense chemo and then I have my next surgeon appt already scheduled in September. I will be getting a port in this Thursday, so hopefully chemo starts next week.
I am getting the genetic testing done, they did that last week when I went for my MRI and my surgeon said that will help us make decisions regarding surgery.
I’m worried about chemo but have decided that we are on the same team fighting against an ugly invader. So, although I know the side effects won’t be great, I welcome the help.
Thank you for replying and the kind words of support. As I have read so many posts on this site over the past week, I am inspired by the fierce women who have been willing to share their stories and offer their support0 -
Moth,
Thanks for posting. Good news for those diagnosed with TNBC
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Ntlw12,
If you haven’t already, you may want to ask your MO about pembrolizumab (keytruda). Moth posted an article which indicates that the FDA approved pembro for neoadjuvent therapy. This was not available to me when I had neoadjuvent, but it is definitely something I would have wanted to have the option of having.
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We know there is a lot of discussion on genetic testing. Has anyone done their genetic testing via "tele-genetics" (over zoom, other conference line) instead of in-person? If so, would you mind sharing your experience with us (send us a Private message)?! Thank you!
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