NOLA in September?
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motherandchild, i am sorry to hear of your friend's diagnosis. I am also triple negative, which is usually considered a fast-growing cancer. I assume that's why the doctor made the insensitive remark (but I'm not excusing him for it). My MO and BS chose neoadjuvant chemo (before surgery). It allows them (and the patient) to see if the tumor is shrinking. Honestly, .8mm seems very small. Even .8cm is very small for a triple negative tumor. I don't know how it being near the chest wall might have an effect on her treatment, but I can share my story. After having a port placed, had I started Adriamycin/cytoxan every two weeks, followed by Taxol every two weeks. I always assumed I would do what my friends had done and have a double mastectomy with implants. It didn't work out that way (thank The Lord) so I was talking to NOLA late in the game. My doctors told me if my lymph nodes were clear, I wouldn't need radiation (again, I don't know how the location of the tumor might play into radiation). NOLA was willing to do it all, port removal, sentinel node biopsy, double mastectomy and reconstruction. They said if my nodes were positive and I needed radiation, they would place implants under the skin (not under the muscle) until radiation was finished then proceed with DIEP later. So I talked my local BS into just doing a SNB, and found I didn't need radiation. After sending NOLA the path reports, they scheduled me right away for surgery. I have done a lot of research and would suggest your friend not do a lot of reading about it in the beginning. It can be quite scary and she needs to stay positive about her treatment and continue to think of her body being healed. She should try to avoid any negative energy. I started meditating frequently and imagining my body healing. I will include your friend in my prayers as I pray for all our sisters.
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Thank you ladies for the info thus far! Zen, I believe what they saw was 8mm... I mistyped. It does seem on the smaller side but the Onc said something about not believing those measurements to be accurate. Today will be an MRI. I am guessing she will get those results next week. Do they not do a PET/CT at any time?
In the meantime, I guess I need to get her into Hopkins for a 2nd/3rd opinion. I start a full time job on Monday. The timing sucks.
Keep any info coming... It is actually nice to "see you" all again... So comforting. I know TNC is frightening and she does need to stay off the internet. She's 52, with 3 boys, and seemingly in good health otherwise. My heart aches for her but I am so happy that I've got such a wealth of information for her. She will have the best care.
I hope all you gals are doing well. Marsha how are you holding up... you look great!
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I never had a PET/CT. Not sure if it is because I was node negative. Every doc is a little different on that issue.
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motherandchild best of luck to your friend, the whole process is so scary and shes lucky to have a friend like you to help her!
Zen did you meditate before bc? I really need to, so many people have told me that it would help me so much. I tried to inquire about learning at a few centers but never followed up on it.
I can't believe I leave for Nola in 8 days- I'm starting to get nervous about everything! Im so scared to go under for 10+ hours!
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my onc didnt order a PET for me, likely due to my stage?
I did freak later though when a CT for my DIEP picked up a nodule on my lung....my onc still wouldn't do a PET, I changed oncs and my new one did it for me. Negative, and the nodule on the lung is too small to be picked up on PET...
As for radiation, I avoided it when I opted for DIEP, BUT, that was due to where my tumor was located in the breast. Your friend will really need to speak with an onc to determine what order things should be in. Ironic I say that as my breast surgeon didnt have me see onc until I was done with surgery. (Lumpectomy)
Wishing you and your friend the best.
Pat
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Bet, I had just started meditating a few months before my diagnosis. I was trying to reduce my stress level, which I recognized as being very high. My son holds meditation classes and was the one who brought meditation to my life. You might try some guided meditations first. Here is a healing CD by Deepak Chopra that might get you started. http://store.chopra.com/productinfo.asp?item=851&...
I now meditate every morning to start my day in a peaceful way. Namaste.
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It has been a while since i have been here and only read a little but wanted to mention meditating on your own and if you have a smart phone, try "calm" it is a free app and is a good start to do on your own. Hope this helps anybody who might enjoy it.
Have a great weekend
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Who makes the 'calm' app? My search comes up with so many options but none simply called 'calm.'
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mother... I am not TN, but wanted to give my opinion. An 8mm tumor is small (stage I small), so that is good. Even if the measurements aren't accurate, they can't be way off. Stage I sized tumors are less than 2cm. So my suggestion is to read, take all appropriate tests (as she is with the MRI - which will give the most accurate size), and if possible have a SNB first, before chemo. I say this because if the chemo works well and shrinks things, later the nodes might be clean but no way to know if they started out clean, which can be important with staging.
I don't know about TN, but with stage I and clean nodes, chemo may not be necessary. But perhaps being TN makes it necessary. Also, for me, having the MX meant I didn't need radiation. If I had had more positive nodes or not had a MX, I would have needed rads.
I believe Dr D also leaves Tuesday open for active cancer.
Being a candidate for DIEP comes down to available fat. Those too thin or too obese cannot do DIEP, but as you know there are other flap options. NOLA can deal with ALL aspects of the cancer patient, but I suggest she get a game plan with chemo, radiation, and nodal involvement from her MO first. In the meantime, she can submit photos and insurance information. I had my surgery 9 weeks after chemo ended... Usually they want it within 8 weeks (but I was on vacation). I also had my tumor removed by lumpectomy first, which may also be an option for her. I had a lumpectomy, then chemo, then chose to have BMX and skip rads. Perhaps your friend doesn't even need MX? She should find out if there is vascular invasion as well.
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I just returned from NOLA.I had a left mastectomy and DIEP,reconstruction for a new cancer just diagnosed in January. I also had delayed reconstruction on the right. I had a previous cancer in 2005 resulting in a mastectomy and radiation.
I cannot say enough about the oncologic surgeon Dr Alan Stolier who cared for me there and did my sentinel node biopsy and mastectomy. He is extremely knowledgable and I had the utmost confidence in his care. I know they leave time in the schedule for women with active cancers.
Happy to tell you more if you like. DK
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Springtime,
After flap recon and all this time that has passed, can you see or feel any difference between your radiated and non-radiated breast?
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KerryA, I had Dr T physically look at me & take pics when I met him at the FORCE conference. He told me he would not be able to save my nipples because of ptosis ( drooping) and the fact they are always rigid. Later when I finally decided to go to NOLA & sent my pics from home I asked for a second opinion from someone else there. Dr D told me he was pretty sure he could spare them so I went with him. I figured I had a 50/50 chance they'd be there when I woke up. Turned out they were. Few days of touch & go with one nipple during healing but in the end all was beautiful.
Let your sister know from what I hear & have seen they're all pretty nice. Has she seen any of Vinny's 3D tattooing? Shockingly spectacular. That's the way I would've gone. Hope this helped a little.
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Pinkheart,
The radiated side is a bit tighter and less relaxed, and a bit smaller. Doc D has told me he likes this look better, ha. This is because the skin is tighter from the radiation. Doc D said my skin was great for having been radiated (it didn't break down or anything) but there is still this permanent effect. It is a very small difference, and I can honestly say I am not sure it is that different than the difference between my breasts prior; in other words, I am not used to perfect symmetry in my boobs! On subsequent surgeries, Dr D always tried to add fat to that side, but as was mentioned previously, it didn't seem to stick. It doesn't' bother me, but if I was going to do something about it, I would try that Brava device to open up and loosen the skin and make space and an environment of vessels for the fat to "take hold" in. (I have a friend now doing a total recon from a flat radiated side with that Brava device with a doc in Miami). Not sure it's worth it to me though, with a bra on, I can't really tell any difference unless I'm looking for it.
Hope this helps!
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Dayle, I absolutely agree with you. I am also thankful to have had Dr. Stolier as my mastectomy surgeon. He is the best, but then one can only expect the best doctors at NOLA. They are all wonderful.
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not sure what the full name of the calm app is, it says calm.com on the info page and the app is blue with the word calm across it, hope this helps, I love the program very simple and easy to use:-)
Enjoy your weekend :-)
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The .com part led me to the app! I will try it this week. Thanks.
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mother...I'm so sorry to hear about your friend. She's fortunate in that she has someone to guide her through this. I was an active cancer patient, but did not need chemotherapy or radiation, so I don't know anything about that process. They do reserve Tuesdays for active cancer patients, so I bet they would be able to work her in within two-three weeks tops.
If you all could spare a prayer or good thought or two, I'd appreciate it very much for my aunt. She had her mammogram last week and has been called back for a number of suspicious areas. What she described hers looking like is EXACTLY what mine looked like. I'm very sad and scared for her.
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Prayers to you.
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thanks for the comments re: how much time it took them to contact you after you sent pictures. No, I am not an active cancer patient.... sent pictures for a revision I sent them about two weeks ago- haven't heard anything yet.... just that they got them. I would really like to know how much my insurance will pay- so I can move on...or say okay.... I'll be flying delta....
Stix....
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Prayers Audrella... Thank you ladies... The ball is rolling.... Got her in to Hopkins next week... we should have a good idea of a treatment plan very soon. Hugs.
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Waiting in the airport to board to NOLA. I didn't think I was nervous, but it didn't keep well last night. That's so not like me.
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Good luck Zen... You are in the best hands!
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Anyone feeling like they want to give advice... I'm all ears.
My girlfriend got news today that her triple negative cancer may also be in her other breast... Not sure yet as they will have to do another biopsy but it's small (4mm). Also she was told the original 8mm triple neg tumor... looked more like 1.9 cm on the MRI... BUT the MED ONC that she met with today also said that since the MRI has her in a hanging position... She was probably closer to the 8mm than the 1.9cm. That is the first time I have ever hear that kind of reasoning. I thought MRI's were so accurate?
The med onc today (who is local and opinion #1) said she could do chemo first or surgery first... probably didn't matter... She could do dose dense or regular chemo... her choice. (I'm not liking the willie nilly)... She agreed she could do the sentinel node dissection first if she decided on chemo first.... (good news, thanks Betsy for that heads up)...
Ok... so next Monday she goes to Hopkins and gets the real deal opinions...She meets with Surg Onc and Rad Onc (wouldnt' give her appt for Med Onc yet)... If they say something similar... as to her choice which first... How would you guys handle it??????? She's pretty sure she wants a double mx even tho' the doc said it wasn't necessary. No radiation if she does mx.
#1) Chemo first, then mx/DIEP at NOLA.
#2) Stage 1 first, then chemo, then Stage 2.... (Is that an option?)
#3)Lumpectomy, chemo, mx/DIEP at NOLA
Do these sound like legit options? Which do you like and why?
Thanks for the love!
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I would like to know who used Doctor Trahan from their primary Doc and NOLA- please PM me.
thanks
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motherandchild5,
My first cancer looked like 1 cm on MRI with clean nodes. In reality it was 3 cm of cancer with a 2 cm tumor in my nodes (4 nodes). Completely invisible on mammogram but I was 37 so had dense tissue. So the MRI doesn't tell you everything and for me it wasn't until surgery that I moved from a "probably stage 1" to "stage 3A".
Its frustrating when your doctor doesn't give you a clear recommendation but that's because she can't decide what your priorities are. The survival statistics for those choices are the same, but your friend has to decide what's most important.
1) Benefits of chemo before surgery: Shrink the tumor so less surgery is needed. KNOW that the chemo is working. Take time to plan for this major surgery and consider your choices. Focus on getting through the chemo without possible surgery complications on top.
2) Benefits of surgery before chemo: Know exactly what kind of cancer is being treated and get an accurate staging. Maybe there is a part that is not TNC that could benefit from other targeted therapy? You can be healing from surgery while doing chemo and reduce the total time you are recovering from cancer treatment.
3) Lumpectomy first: I wouldn't see the point of getting a lumpectomy followed by DIEP if your doctor is comfortable with preadjuvant chemo. This would be an unnecessary surgery that can mess up the final cosmetic result. No matter what the BS says they might take, you might wake up with more deformity than you expected. I did and had to get a skin graft to fill out the breast envelope. But it may address a psychological need to "get the cancer out", some call this and emergency of the mind.
I would definitely get the SNB first so she knows if radiation is required or not to the upper axilla. If radiation is required I would do #1 for sure, because radiating the flap could affect the DIEP results. Dr. Sullivan didn't think it was as big of a risk as other PS I talked to -- he felt he could fix it in stage 2, but I didn't like the sound of risk even though he was more confident than most.
Zen, thinking of you! Have safe travels and soon you will be on the other side.
All - I have an acquaintance that was referred to me that had a botched breast reduction. Lost a nipple and lots of skin necrosis with a wound vac. She has never had cancer. I know she can call them to discuss, but I wonder if they do that kind of work. I don't know if insurance would cover it. Anyone heard of them doing purely cosmetic work?
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zenful - hope you had a safe trip. Can't wait to meat up later this week.
I arrived in NOLA Friday and LOVE this place. It seems to suit the artist and NYer in me! What a great place.
I checked into hope lodge yesterday; it's much nicer than I expected. A bit off the beaten path, but oh well.
I had my pre-op today. It took 45 minutes just to get a vein to insert the contrast into my arm for the CT. I'm used to it (my "good" arm for blood work is of course the right side where lymph nodes were taken) but the nurse felt bad. She had to call up the anesthesiologist to finally get a vein.
I met Dr. S, and what a nice man. Actually, everyone today was so nice. He surprised me by wanting to check my stomach. I had a TT after baby #5 and then a laparotomy this summer. He actually found a bunch of good veins w/ the doppler. He said he will make a small incision tomorrow and make sure they are in good shape; if they are the tummy plus hips will give me enough for recon without implants. Plus it will remove a good portion of my vertical scar and give me back my belly button😁
If the veins are not good on the stomach, he will do a hip flap with small implant as planned. He said he he will redo my tummy tuck at stage 2.
He also noted "nipple?" on one foob. He said he may tackle that tomorrow!
So, I'm not sure what exactly I'm having done tomorrow, but I know it will be good!
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momof5 - You will be so happy with the scar revisions. I had put up with painful lumpy scars under my arm after node removal and ugly laparaotomy scar with staple marks over my pelvic bone from oophorectomy. Both look so much better and less painful. I can actually imagine them fading and not being noticeable at all one day.
Good luck with your surgery!
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Mother... Marsha has some great points.
If it were me, I would do the SNB first. Then the DIEP stage I. Then chemo. Then stage II. Stage II can wait a very long time, so she can be totally recovered from chemo for that. My reasons are I would want an accurate staging. And as Marsha said if there were some ER+ cancer in there, its important for treatment. It sounds like the one thing they ARE sure of is that she won't need radiation. But having the SNB first will confirm that.
My second choice would be SNB, chemo, then DIEP.
The only advantage to a lumpectomy and SNB first is that you know exactly what you are dealing with before MX/recon and chemo.This was the path I took, but not by design. I had the lumpectomy and SNB, which led to chemo. While in chemo, I realized I wanted the BMX and flaps and could therefore skip rads. In the end, it was a great option as I got the tumor out, had plenty of time to plan and schedule my surgery and I had a very accurate pathology report.
As far as which chemo... can't say. TN may be better served by one drug over another. I was on TC, and specifically asked not to be on ACT due to possible heart damage... I love the idea of second opinions.
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mom... good luck tomorrow.
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Mom-Zen & Startingover--best wishes to all of you. I woke up the morning of my surgery and was really calm (even though I was nervous leading up to that day). I was happy with my surgical decision. Thinking of you!
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