Calling all TNs
Comments
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welcome hollywood- sorry you are here. It must be extra frightening for you since you lost your mom to cancer - so sorry to hear that. But you have every reason to be optimistic. It’s a long road to be sure, but the ladies here and on other threads will get you through. The only ones who really “get it” are the ones in it.
Are you doing chemo or surgery first?
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Paula! Thank you so much for your encouraging post! I am so happy that all is well with your daughter and grandson!! Keep enjoying those childhood years with him, - it goes much too quickly! Thank you, again, for sharing!!
hollywood, - welcome to the group that no one wants to need, but everyone is glad they found! I am sorry that you are dealing with this, and that you lost your mom to cancer. Ovarian can be trickier though, and you are in a different situation. These boards will help you get through the road ahead! Keep your chin up!
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I will be doing chemo first. Tumor is large so hoping to shrink it. Start Chemo june 14.
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Hi, Hollywood. I know that it's scary having a large tumor. Mine was about 7cm. I had chemo first, too. The chemo made the tumor completely disappear. By the time I had my lumpectomy there was no evidence of any cancer in my breast. I'm hoping that you have the same experience I did. Hang in there!
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Welcome Hollywood!
You might want to join one of the chemo groups if you haven't already. I found that really helpful when I was going through chemo. Chemo is manageable. Let us know if you have any questions or if you just need to vent.
Rebekah
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Welcome Hollywood 19. We look forward to giving you the support you need. Sorry you have joined us, but vent, rant, type your fears. We all had and have them.
Va
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Thanks for all the support! I have port placement Friday. Before the 1st chemo I will have a CT, a bone scan and an echocardiagram. Is this normal? I have already had an MRI. Just saw MRI results and it mentioned an area of concern on the other breast. FANTASTIC!!! I don't feel sick. I had a complete hysterectomy and oophorectomy in 2016 beacause of my mom dying from ovarian cancer and now this. What the hell?
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Hollywood, I'm sorry you've been tossed into this pool but I'm glad you're here. You've tapped into a great resource of caring people. As for the schedule of appointments you're facing, you're getting about what I had at the beginning. Bone scan (to look for other spots), Echo (verify heart's function), a CT for a look at lungs, liver and pelvis. I too had a surprise MRI finding in my other breast. Despite the initial Bi-Rads 5 rating the biopsy came back as benign. Here's hoping the same for you. I've participated in some clinical trials that have helped me feel like I am doing as much as possible on my own behalf. Don't be afraid to ask about clinical trials as you start treatment if it is something you might be interested in. You can always decline the trial later if it doesn't feel right.
So far I've found all of the treatments and procedures to be manageable and able to maintain my mostly normal life. I hope it is the same for you. You've got this!
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hollywood19,
I had a PET scan and an echocardigram. The echocardiagram is to ensure that your heart is strong enough to withstand the chemo. I, too, had a hysterectomy and oophorectomy, but mine was because of endometriosis. I'm glad as my genetic testing turned up positive for a new gene: BRIT 1. I'd have to have my ovaries out now if I hadn't.
Lots of good advice and support on these boards. I hope your port placement is as smooth as mine - not painless but all healed up and working well for 9 months now.
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Welcome Holly.
Hats2, May I ask why they only removed one lymph node during your lumpectomy
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Thanks, ladies!
Hollywood, I agree that joining one of the "starting chemo in x month" groups is very helpful. Reading through earlier groups can prepare you in terms of symptoms and help you develop a list of questions for your medical team. I hope all goes smoothly.
Lyn
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Welcome Hollywood,
I had stage 2A and my tumor was about 4 cm. It shrank away to less than a mm. Hoping yours will too! At the beginning I had a chest xray, echocardiogram, bilateral MRI, CT scans, bone scan, and I think that may be it? They found an area of concern on other breast with me as well and I then had a MRI guided biopsy. It turned out to be nothing. They just like to be super careful. Hoping you have only good results with everything. Thinking of you.
Anne
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Hello,
I have been a lurker since diagnosis in February this year, but am ready to be a more active participant now. Having a TNBC dx really is different from most other women I know that also have BC.
I was 41 at diagnosis and have two girls (10, soon to be 12) as well as a supportive husband. Like most of you I have committed myself to doing any and everything to beat this. My faith has been what has gotten me this far. My job as a horse vet is very physically demanding and I haven't practiced since diagnosis. I'm not sure I would have been able to do a desk job either as chemo has been tough. All genetic testing was normal so we elected to skip Carboplatin as I have had a very good clinical response to A/C. I completed my 5th weekly Taxol this morning.
I really like my team so far. With my medical background I joke that I have enough knowledge to be dangerous and bring articles to my appointments. My MO and I have even swapped articles and had long discussions about drug protocols. I will have radiation even if I attain a pCR due to age and TNBC. The RO admitted she had never treated a T2N0 post mastectomy but we discussed a recent review and think that it's worth it .
Role of postmastectomy radiotherapy in early-stage (T1–2N0–1M0) triple-negative breast cancer: a systematic review
Fengxia Chen and Feifei Pu
That leads to my next treatment decision. From the onset I made the decision to have a BMX as I want to decrease recurrence risk. I was set on pre-pectoral implant reconstruction, but rads makes that not a good option. I have made peace with the decision to do free flaps (hoping for PAP) and would very much like to have Immediate reconstruction done at time of BMX. Oncologic safety is of the utmost importance, followed by function and lastly cosmetics. I understand that rads WILL impact the flap recon and likely cause skin changes as well as shrinking/contracture but will be significantly less than with an implant. I really want to avoid additional immune-supressing procedures as I keep thinking that could lead to higher risk of recurrence. Many of the women that undergo reconstruction seem to need/desire multiple revisions and I just don't think that is wise for a high risk TNBC.
How have you approached reconstruction due to being a TNBC?
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Hi,
I did choose subcutaneous tissue expanders and I start my first (of 28) radiation treatment tomorrow. My plastic surgeon did not seem to anticipate a problem, other than the usual redness and tightness of the radiated breast (I did DMX). I'm 64, Your priorities are exactly mine, so when the axillary node dissection left an indented space and my doc said, "Oh, I can do a fat transfer," I said, "Exchange (expanders for implants) only for me!" I'm very pleased with these smaller breasts, and I also don't plan to do any nipple recreation. This way, I don't have to wear a bra if I don't want to, and coming down from a DDD underwire, that's wonderful.
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Hi & welcome to the new folks...
I have a question about rads. If you had neg lymph nodes & a lumpectomy, what is best evidence based practice for radiation of lymph nodes? Yay or nay?
I'm caught in this weird limbo of being sort of TN and sort of not. My MO treated me as high risk to recur and prescribed AC +T.
The RO team is seems to consider me more a stage 1 low risk & is only recommending whole breast rads + 4 boosts to the tumor bed due to one margin <2mm. They said because the lymph nodes were neg, they're not recommending doing them.
Anyone have access to ASCO18 abstracts? There was something from the Curie Insititute about lymph node rads but I only saw the tweet & haven't tracked down the study yet.0 -
Calliegirl...this may be an absurd question, but what is the MO refer to in the study? I understand the T1-2 NO, but what is the MO? thanks and sorry if this is a silly question!
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A4ggy : T = tumor; N = nodes; M = metastases
More on TNM staging here: https://cancerstaging.org/references-tools/Pages/W...0 -
MO= Medical Oncologist
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I am confused by staging since my doctors didn't really ever talk about it with me, in fact said I should ignore it.
I am so incredibly blessed that chemo wiped out all my cancer before my lumpectomy. If I were to refer to my staging is it the stage the cancer was at when I walked through the door of my MO's office for the first time, or now that there is NED?
Is staging something I no longer need to think about at this time, or do I say 'I was stage IIIA but now am stage 0" ?
Is anyone able to to explain this to a still chemo-brained TNer?
THANKS!
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Moth,
I haven't had Radiation yet, but have the plan in place. After lengthy discussions with both the RO and MO, we elected to do whole breast and I specifically requested to do Internal Mammary and Clavicular nodes due to the location of my index cancer (upper inner quadrant). If I have any axillary involvement at surgery (not expected), we will include axillary nodes. If not, the 20% risk of causing lymphedema by radiating the axilla is not worth it.
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Thanks CallieGirl. My tumor was in lower inner quadrant, so I'm pondering rads on internal mammary lymph nodes.
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Hi LoveMyVizsl - the positive lymph node from biopsy was also the only lymph node that showed up with the dye and isotope as draining the breast at surgery. I'm part of the Alliance study looking at whether limited node removal with Rads is as effective as axillary dissection. Because I was node positive I was going to have radiation either way so the opportunity to limit my lymphedema percentages seemed like a good reason to join the study.
It's been an interesting experience.
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6month follow up with MO, 3 month RO yesterday. All blood work great, everything looking good. I’m having some facial/head tingling numbness which I was extremely panicked about, but I’m on tamoxifen and this can be a SE - I also have seasonal allergies and probably anxiety - all of whic can be contributing factors. So much fun.
As I was driving up to the cancer center I screamed at the top of my lungs “I hate f**king cancer!” - it was spontaneous but I felt better. Just going to that building changes me - it’s like I shut down. I don’t want to make small talk or here I look good - then I feel guilty!
This stuff really messeswith you!! Rebekah mentioned it being like PTSD. I would never want to minimize it or the people who truly suffer from it, but sometimes I think we do have some of the symptoms.
Love to all - keep strong.
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VL22 - loved the in-car explosion, glad you made it feel better! Also glad you got an answer on the tinglingand can breath easier! As for the PSTD touching in various ways, I ditto that.
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Speaking of PTSD, my PCP prescribed me Lexapro and I think it's helping, but it's only been a week. Just an fyi, it's worth getting something if you are having lots of random crying jags like I was. :-)
R
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rdeesides - sorry you've been suffering but glad that you saw your doc and got something for it. I know someone who is on that med and also reported feeling a better a week after. Within 2-3 weeks it was definitely a huge change, and no side effects at all. It does seem to kick in quickly. I hope it works as well for you!
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rdeesides - I AM someone on Lexapro, and I have been for probably a decade. It makes - ok, before diagnosis - it made life normal again for me. I hope it is helpful for you without side effects. Give it time, and I wish you the best.
Paula
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Treatment plan decisions were incredibly difficult for me, Moth, so I feel your pain. I will note that with 16 whole breast only radiation treatments, my lymphedema arm volume went from 9% larger than the non-surgical arm to nearly 24% after radiation. If that happened without even targeting the lymph nodes, I would be concerned about potential impact if the nodes are treated. Perhaps you could contact your radiologist before treatment and ask him or her to specifically research your type of situation so you have a complete understanding of risk versus benefit. I'm one who does a lot of research on my own, but there are studies that most of us can't access without an expensive paid journal subscription.
With triple negative, I know that temptation is to throw the entire medical book at the problem. Still, I have a number of permanent side effects from surgery, chemo and radiation and would choose a different path if I could rewind the clock.
CallieGirl, my treatment plan ended up being all over the map, but I had bilateral reduction surgery two months before radiation and my skin held up nicely. I had 16 whole breast treatments. My RO would normally have recommended four boosts, but my breasts were so dramatically reduced (from F / G to a smallish C cup) that she didn't think the boosts were needed. Interestingly, the reduction scars on the zapped side are less noticeable on the non-treated side.
I hope all goes well for you both!
Lyn
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Hi All, I'm more of a lurker, but wanted to post that I just passed the 5 yr mark from my TN diagnosis. There were a few false alarms along the way, mostly because I'm a worrier by nature, but my oncologist was great about ordering scans to ease my mind. I'm 61 now, and I keep exercising and eating well - most of the time. Best wishes to everyone.
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HI all!
I have been sick with some nasty strep so port placement was delayed. Thursday I went to my PCP with a 102 fever and he talked with my MO and surgeon it was decided to postpone port until Monday. I received a Bicillin injection. It was painful but It worked in 24 hrs. So I get port tomorrow and chemo still starts Thursday. I have read the tips for chemo so I have a bag ready. I am not a very emotional person but I have dreamed about shaving my hair off and woke up crying. Not looking forward to that day. I have hats, scarves and a wig already so I am as prepared as I can be. I definitely agree with the PTSD analogy! Wish you all the best ladies!
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