Calling all TNs

Teka

Stupidboob, sent a PM.

Luv, moving belongings is such a chore.

Cocker, this thread always had a sprinkling of laughter.

Friday, had 6-month MO visit and will now only have yearly MO visits along with continued yearly mammograms.

I started to track my anniversary date with 1st yearly mammogram after last BC treatment. I've had 5 NED yearly mammograms.

Placid,

LillieRose

Hi all,

Thank you for the welcomed and messages! Much appreciated

I'm having a panic attack and need advice! I just saw my radiologist oncologist and she told me she's not comfortable going forward with radiation! She said since I had a Pcr and no node evolvement, and a BMX that the risk outweighs any good she said I'm more likely to get cancer from the radiation...

My husband thinks it's great news but I am having a very hard time. I was already upset about not having more chemo and now I don't even get rads?!? I'm done with treatment.... How is that possible? How am I suppose to just move on?

Msmath

LillieRose I know it can be scary to think no more treatment. I just finished chemo on July 27th and will not be having radiation. I also had a BMX with no node involvement. They basically said they would not have a place to radiate. I went to my MO this past Friday and they basically talked to me about my blood and said it would be fine for me to have reconstruction surgery in September and that they would see me in November. I feel like I am in such limbo. I have been going to see a dr almost weekly sometimes twice a week since the last week of December. Now I am just at home trying to recover from the chemo and praying my cancer is gone and not just hanging out somewhere waiting to show itself. I think the best advise is to try to get back to doing what you did before a little each day and be thankful for all the things you can still do. I have little goals each day that I try to accomplish and a few short term goals for the future. This message board is also a wonderful place because everyone here gets what you are going through.

ALHusband

LillieRose I'm no doctor, but the course your doctors are taking seems right in line with what everyone else who had the same diagnosis, etc (no nodes, PcR, BMX) that I have read about has had, with the exception of not finishing chemo. But, given that you got a PcR maybe they decided there's no reason to pump more poison into you. That said, what I think might give you some peace of mind is to perhaps go for another opinion. It's fairly easy to have all of your records sent to another reputable Oncologist. Or, have them give YOU your records and go see perhaps another MO or Radiation Oncologist or both. Remember, YOU are in charge and you're entitled to confer with other doctors if you're not comfortable. I think maybe a second, or even third, opinion might make you feel better. But regardless of what you do, be sure to grab onto that PcR and celebrate a major win that not all are blessed with achieving!

LillieRose

thank you so much for your reponses! I just keep feeling like "I got off to easy" if that makes sense? Everything I've read for someone with my situation (30 yrs old and postpartum) is like doom and gloom.. The bad shit. I was planning on a ton if aggressive treatment and that is what they planned... Now I'm getting out of treatment havin only done 8 weekly taxol, 4 AC, and a BMX... It seems to easy... It seems like I should have more. I'm scared I'm not doing enough and they say hit it hard the first time

CarolinaAmy

Hi everyone,

I've been in a whirlwind of starting my girls back to school, heading to UNC for the consultations, getting ready for a painful transition in our family this weekend, and heading to Duke tomorrow for a final consult before moving ahead. I'm stretched way too thin right now.

To add to everything... while I was at UNC last week, I found out that my sister had a colonoscopy due to ongoing symptoms. The doctor brought her out of anesthesia to tell her there was a large tumor that needed to be biopsied. Yep, it's cancer. So my parents have to deal with both of their 40-ish daughters having cancer at the same time. It's horrific.

UNC was a surprise. I thought they'd automatically go for neoadjuvant chemo, but Dr. Carey really didn't think it was needed. She said that, because we caught the tumor at a relatively small size and there isn't clinical evidence yet of nodal involvement, the Adriamycin brings a 1% risk of heart damage and/or leukemia that is about the percentage of improved prognosis. It's kind of a balance right here and she isn't thrilled at giving a young woman something so hard on the heart. "I have to keep you alive and healthy for another 45 years, so that impacts the decisions.". It's not a BAD idea, but the folks I spoke with at UNC all said surgery first, then chemo.

I was surprised and unnerved, because my MO here was on board with neoadjuvant only because she was finally able to feel the tumor and thus monitor whether it grew. Otherwise, she wouldn't have done it. But given everything, including my age and the borderline size, etc., she even commented, "With all the factors... it's what I would do". And somehow I was relieved and felt at peace about it.

My husband is definitely not thrilled at the idea. He thinks I should do lumpectomy and chemo, not realizing there's no chance to avoid radiation in that situation. Since the tumor is on the left and close to the chest wall, I'd like to avoid radiation if at all possible and so I'm considering mastectomy. I'm considering BMX just to lower my chances of recurrence to the lowest possible number. He thinks it's overkill for a "really small percentage". It's not small when you're talking about my life. And given that the only appointment he's gone to is the initial one with the surgeon, and that he hasn't done any research at all to understand this, I think he needs to be careful in wanting me to go the easier path.

I know it isn't necessarily what has to be done, but I just feel the need to go at this as aggressively as reasonably possible. I don't want to be three years down the line and think, "Gosh, what if I HAD gone the other way?" That's a regret I'd have a harder time living with, I think. I want to see the tumor respond to the chemo before removing it, even if that costs me the chance to find out the nodal involvement pre-treatment (and that's a tough pill to swallow). But it gives me a greater sense of peace that I'm not in the ~10% of women whose tumors don't respond to the standard chemo regimen. And that honestly outweighs the risk in my mind. I have to be able to sleep at night.

So hubby is going with me to Duke tomorrow because I've painstakingly arranged child care for all three. We'll see what they say. If they argue for surgery first, he's going to really resist the neoadjuvant plan. He was already getting prickly about it on the phone last night.

In the meantime, my port placement is scheduled for next Wednesday and my first chemo (AC dose-dense x4) starts the following day. I had my chemo teaching with the MO nurse and feel much better about the decisions. She was great--listened to my concerns both ways and I felt reassured that I'm making good decisions and that this is reasonable.

My apologies for venting it all here, but it's my first opportunity. I just need to have a plan now and go for it. And I want to go at it HARD coming out of the gate. I don't have time for a recurrence!!!

(Oh, all MRIs, bone scans, CTs showed up clear. There IS a fairly large 'ovoid mass' found in the vaginal canal that may be a polyp, and apparently I get to get a transvaginal ultrasound at some point to check on that. That's the one blip. That and 'degenerative osteoarthropy' in both shoulders, hips, knees, ankles, and areas in my spine. Lovely.)

Msmath

CarolinaAmy I went with the BMX for peace of mind. All of my treatments have been done in Greensboro and I have been extremely happy with the level of care. I had surgery first then chemo. I hope you get the information you are wanting so you can make your decision and be at peace with it.

ALHusband

KSteve

CarolinaAmy - Wow, your sister has cancer too.  How stressful for your entire family right now.  Remember, your treatment is your decision.  I totally understand wanting your husband on board, but your peace of mind is what's important.  You're doing everything the right way.  Getting all the facts and multiple decisions.  The bottom line is, there are several different ways you can go due to your tumor size, etc., as you've found out.  I also chose chemo first, then BMX.  Because the pre-treatment MRI and petscan showed several nodes, I had no choice but to do radiation as well.  I had great peace of mind once we could actually feel my tumor shrinking as the treatments progressed and I had a complete pathological response at the time of my BMX, no cancer cells in breast tissue or any lymph nodes (they took 15).  I was 44 when diagnosed.  There are lots of success stories with lumpectomies and then chemo after.  This diagnosis definitely affects your husband and your whole family.  But it's your body.  Maybe if you explain your feelings, it will help him get on board with whatever you decide.  It really is difficult for someone without cancer to really understand what it going on in our brains after we've been diagnosed.  I wish you the best in your decision making, and I hope your sister gets a treatment plan figured out soon too.  You're at the hardest part right now.  Once you have a direction and a plan it will get better.  Sounds like you're getting there, and good for you for seeking additional opinions.  Education (by doctors, not google) is the best way.  Don't hesitate to reach out along the way.  We're all here for you!!

Hugs,

Kathy

simplelife4real

Shari, congrats on finishing chemo!

Placid....hooray for 3 years! That's a big milestone in TNBC land.

Carolina, I'm so sorry to hear about your sister also dealing with cancer. I agree with KSteve's comment that ultimately it is your decision as to your treatment plan. It's your body and your life.

Wishing everyone else good health. I've been reading the posts, but not commenting much. Hubby and I have just taken off on a two month long road trip.....knocking more things off our bucket list. I feel very grateful to have the health and resources to take this trip.

Luvmydobies

CarolinaAmy, I'm so sorry about you and your sister both dealing with this crap!! I'll pray for you. Dr. Carey is very knowledgeable about TN so I think she's one you can definitely trust and put your faith in!

I have a question. My left ankle is swollen a little tonight on the outside around the bone. I don't remember hitting it or twisting it. It doesn't hurt but I'm really nervous because my Oncologist checks my ankles for swelling when he does my checkups. Could this be some sort of Mets? Blood clots? Very scared!! Maybe I should email my nurse navigator tomorrow. My ankles have been sore sometimes when I first get up in the morning or if I sit for awhile but they usually feel better after I walk around for awhile. Anyone have any advice or experience with this? Thanks in advance!!

LillieRose

CarolinaAmy I'm so sorry about your sister and my heart goes out to your parents... It seems like cancer doesn't play fair I lost my dad in 2011 and my brother in 2013... Then to fund out when my baby girl was just for months I had tnbc at 30.

This is such a long road but you sound so strong and confident! Keep that attitude! I did chemo first and then BMX. I anyway knew id have a BMX... I could find any solid data but I found a lot if young woman who developed a new primary that had lumpectomys. For me I needed every shot to beat this and I'll take the 2% better. I also had no recon... It's a lot to deal with and I wasn't mentally ready for doing more to my body. I'm 2 weeks out from surgery and I feel pretty good.

I didn't want to do chemo first but my docs really pushed it. I was so scared all through chemo but I lucked out and got a Pcr! I hope you do too! Because if that no rads for me!

Also about the nodes did they do an FNA biopsy? I had obe and it came back clear so they always though no nodes and surgery did confirm it!

Good luck lady!

kimie06

Hi Ladies - just poking around on the forums, wanted to say hi, Triple negger here diagnosed at 36, I am almost 2 years out from diagnosis !! so far, so good, finished rads just a little over a year ago in Toronto.

one love

Kim

mags20487

just popping in again after a long absence to say hello to my TN sisters. My 4th cancerversary came and went without much fanfare.

Busy back enjoying life now and using my energy to help my newly diagnosed Mom who has ER+. She had lumpectomy 3 weeks ago and will see the oncologist soon. Pretty sure no chemo as it was very early stage no lymph involvement and she is too old for it anyway. Radiation is likely however so I am hoping that she can endure that without incident.

Love to all. Stay strong

Maggie

jenjenl

Lordy LUV, i think your ankle is ok.

CarolinaAmy

Thank you all for your kind words about my sister. As I arrived at Duke yesterday, she texted me to say that she was leaving the ultrasound at the surgeon's office. It's invaded through the colon and the lymph nodes, and surgery is not an option. They'll do radiation and chemo. If it's not responsive to that, the only option is to remove the entire rectum. I'm pretty shaken by this.

So my visit at Duke wound up being 7 hours long and I'm just completely drained, emotionally and physically. And totally confused. The surgeon said that until my comprehensive genetics panel comes back, I should start neoadjuvant and then make further decisions. The risk of adding Adriamycin was small but the peace of mind would be great. (After discussions with my local surgeon and MO, the MO agreed to neoadjuvant chemo because she believes she can feel my (small) tumor and monitor its progression. Standard 4 rounds of A/C then 12 weekly Taxol.)

However, the medical oncologist there was more in line with Lisa Carey and felt I should just do surgery first in the likelihood that there's no node involvement and then I'd just do 4 rounds of TC. The risks of Adriamycin are enough that they think it rather balances out with the benefit of seeing whether my tumor responds or the hope of a pathologically complete response. The MO at Duke yesterday just said, "That's just a TON of chemo for a small tumor!"

I'm completely torn at this point. The more research I do (last night), the less at peace I feel about either one! I even saw one study about a 31% improved prognosis for the TC treatment (which I'd get after surgery if there was no node involvement) over the A/C plus T. I don't want to get into "analysis paralysis" where I just get mired in the conflicting information and freeze up, but I'm scheduled for a port placement next Wednesday and to start chemo Thursday. I don't have much time to choose a different direction!

There's even information about different taxanes, some of which seem more promising than standard Taxol. I know I'm not a doctor and there are reasons for the regimens they've all suggested, but I really want to kick this thing to the curb with room to spare the first time out. I wasn't too frightened of the chance of heart damage/leukemia from Adriamycin, but someone mentioned in the 'pCR' thread at the TNBC foundation page about "look, our heart just isn't the same after A". If that's just a given, maybe I have to take this more seriously than what I thought of as a possibility of damage.

I just can't bear the idea of taking the tumor out (which is great, 'cause then we'd know exactly what we're dealing with and confirm a negative node status--yay) but then wondering if I'm in that 20ish percent whose tumors do not respond to the chemo regimen. So those rogue cells are just a time bomb waiting to go off and metastasize.

I know I'm all over the map here, and I apologize for that. Please help. I just don't know what to think at this point, and I have little time. Plus, I recognize that after my sister's diagnosis, my brain is not fully functional.

Curlyq1974

Ugh Carolina!!! I am so sorry you are so torn. I agree with the one doctor about the genetic panel. Unfortunately from you history, it sounds like you may have one. I unfortunately am BRCA 2+, and found out after I had cancer. I have done all the prophylactic surgeries and in my signature line, you can see my chemo treatment... (sorry to point you there... but I get confused with what I had) and radiations... I had a positive node (Blah... ). The frustrating reality is, we all go thru this hoping that we kill it. But something else, like a bus, could get you in an instant. (Damn buses... the stats on those things are terrifying - LOL!! Sorry, I deal with stress with humor... )

You have to do what YOU think is best for YOU. I swear by the power of our attitude. It is a VERY powerful medicine. But if you introduce doubt, and stress, that also is a powerful disease.... It sounds like you have some of the very best doctors in the nation. They have trained, studied, practiced way more than we can do with the internet. Trust in them to lead you. I would honestly look at the way they treated you... did one listen better than the other? My doctors - all of them, have listened to ME... have treated ME...

Sorry this isn't very insightful. I truly hope you find peace. Once I had my treatment plan in place, I was blessed with peace like I have never known before. And happiness. I wish that for you as well.

Best wishes. You, your sister and family are in my prayers.

Teka

Maggie,

Hope minimal side effects if Mom has BC treatments!

Teka

Carolina and Sister,

ALHusband

LUV it sounds like a little lymphedema maybe. My mom had it when she had Lymphoma. The doctors said they couldn't do anything about it. Her Chiropractor massaged it away in about 10 minutes and it never came back! LOL!

Cocker_Spaniel

Lillyrose I too think a second or third opinion would be good to help you but its good to know they are not just going willy nilly and giving you everything when you may not need it plus you had no node involvement. I would have been over the moon if I hadn't had to have radiation. God willing you never need it but it is armour for in the future whereas once you have radiation you cannot have it again in the same area.

AL loved the minion and it's so true of Google.

Carolina so sorry you and your family are going through this crap. Because you have had such a whirlwind time it will be hard for you to make a decision but I think I would wait until the genetics come back because this could alter your treatment and decision tremendously.

Teka always there with some comforting pictures. Thank you.

Mags four years woo hoo. Keep on with that living girl.

LUV I would eat my hat if you had mets to your ankle. As for a blood clot you would certainly know if you had one. It's extremely painful with swelling, redness and is very hot and it wouldn't get better once you are up and about. How is your house rental coming along.

My old feller caught a cold and was coughing badly. He went to get a tyre out of his car boot, had a coughing fit and now has a hernia. So it's surgery for him shortly. Never rains but it pours.

Luvmydobies

CarolinaAmy, first of all I want to say I'm prayingnfor your sister and you and your parent's of course too. I had surgery first and always think I wish I knew whether or not it responded to chemo. That said I can't go back and change anything so I just have to hope and pray the chemo took care of any rogue cells.

Al, I don't think my ankle swelling is Lymphadema. I do have truncal Lymphadema from the breast cancer stuff but I don't think that would cause my ankle to swell. I am going to my regular doctor Monday because I'm still nervous. It's not swollen much in the morning but swells up some after I've been up.

Cocker, the house stuff is such a pain! I'm mostly mad at my husband because I do not want to move! He's being a real ass about it though! Nobody wants to rent to people who have dobermans because most insurance companies won't cover them because they're on the "aggressive" breed list. State Farm is about the only insurance company that will allow these types of dogs unfortunately. I don't think I have mets to my ankle but I meant I hope it isn't like liver mets or something like that. I know liver dage can cause ankle swelling but didn't know if it meant cancer. I've read Dr. Google too much because I haven't been able to sleep much because of all the stress lately. I've been worried about a heart issue possibly from chemo, kidney issue, etc. I just think that if it was just normal fliud retention that both ankles would be swollen instead of one. I hope to find something out on Monday.

Cocker_Spaniel

It's a beautiful day here in paradise. There's not a cloud in the deep blue sky, the mountains are covered in snow, the lake is sparkling and the blossoms are starting to burst. Just three days to the start of spring. Makes me so glad to be alive.

Teka

Cocker, starting to feel like Fall in the North Country. My favorite Season!

Nanuan

Hi everyone,

I'm not new here but forgot password then I have to re-sign up.

I am over 3 years out from diagnosis. I just want to let the newbies know there are a lot support here.

This place was my favorite to strengten my soul during treatment. Thank you

 

CarolinaAmy

Thank you, Nanuan!!

greenae

Thank you, Nanuan! And Congrats to 3 years!!!

Arlene

Allydp

Meadow - I'm so very sorry for the loss of your beloved horse. Sending you big hugs. I'm also ecstatic for your cancerversary, so sending big hugs there too!

Luv - I'm sorry for all you're going through with your husband. I hope he will compromise with you and understands how important it is to you to stay near your medical team.

LillieRose - I was in EXACTLY your position! I was all set to do rads, but then I had a PCR to chemo and my rad onc, along with 2 additional second opinions from top university hospitals, told me no way. They said since I'd had a PCR, that reduced my risk as much as rads would have, so the risk of rads wasn't worth it at that point, especially since I was young. It was an agonizing decision for me since I was very aggressive in my treatment and wanted to throw the kitchen sink at my tumor. Not doing rads felt like I was leaving something on the table, but in the end, I decided to listen to the experts and I didn't do it. Sure it still crosses my mind now and then, but I'm at peace with the decision. PM me if you have any questions about all that! I'd be happy to share any further insight I was given!

Congrats to all the cancerversaries here!! Love seeing that news!!

Hello to all the newcomers. I'm sorry you're here, but this is an amazing and supportive group of women.

CinderellaNC

Carolina Amy, I have been very interested in reading your updates from your consults at UNC and Duke. I have triple negative BC also. You probably remember some of my posts as I am the Charlotte lady. I have followed it seems the protocol that the MO's from UNC and Duke have given you. I wanted my cancer out of my body the day I found it was there. Didn't consider neoadjuvant chemo and it was never suggested for me. I was grateful to get a quite good path report from the lumpectomy with clear margins. I am 63 so my age also probably has some bearing on differences we might have in our treatment. I was switched from the AC dense dose four rounds followed by 8 or 12 weeks of Taxol to the less harsh regimen of 4 rounds of Cytoxan and taxotere. The tumor board was unanimous in deciding this was the best chemo regimen for me. I and my husband worried a little bit about whether this would be enough chemo for my triple negative. He did some research and found some info supporting this as being the better regimen than adding Adriamycin to my cocktail. My heart is in good shape from checking with an echocardiogram so that didn't worry me as much as the increased risk of leukemia or MDS down the road from taking Adriamycin. Also I have ILC and it is Grade 2 , maybe that makes my situation less responsive to chemo in general although I have never been told that by my MO. You can only do what you feel most comfortable with in the long run. But try not to overthink it all too much. It seems that would make it harder for you in the long run and not helpful in making peace with your final decision. I am so sorry about your sister. My heart and support goes out to both of you at a particularly difficult time. Just try and trust that you are doing the best treatment regimen possible for your cancer and then move on from there. Wishing you and your sister the best

Allydp

So I have small little issue I'd love to run by you all for your opinion and thoughts. Several months after my BMX I found 2 small lumps near where my original tumor was. They were biopsied, tissue markers were inserted, and both were benign. My BS ended up surgically removing one of the spots, which was just scar tissue, so that other tissue marker is still there next to my implant. Ever since that procedure I've had some slight pulling where she opened up my scar...which again is right near my old tumor. A couple months ago I started noticing some pressure in this area, which has recently been getting worse. I'm constantly adjusting that breast trying to relieve it. It's only painful very once in a great while, sharp and quick, but it's mostly just a pressure feeling. There's no question it's directly where my tumor was. I'm seeing my onc's NP on the 18th to address it, but I was hoping to get some thoughts. Could this just be pesky scar tissue causing issues from the additional prodding around, or would a local recurrence present like this? I truly feel this will turn out to be nothing, but since it's becoming a constant feeling, I feel like I'd better err on the side of caution.