Stage 2 Sisters Club
Comments
-
Had my appointment yesterday. Only saw the plastic surgeon. He said best option for me is flap surgery, but since I am getting a bilateral mastectomy it will really weaken my stomach. Is this true? Has anyone had a double flap? He referred me to another PS who he said can evaluate me for just moving the stomach arteries, but I read where there is less success wait with this. Now I am depressed and wondering if I should just not do reconstruction.
0 -
I would definitely check out the no-reconstruction threads if you have doubts. You don't want to commit to the whole reconstruction process, which can be very difficult, unless you are sure that is what you really want. One option would be to do the mastectomy and see how you feel about being flat before making a final decision. You can always reconstruct later after you have had time to sort out your feelings.....but maybe you will find you are happy without reconstruction. Don't let anybody pressure you into something right away if you are not sure!
0 -
missing - hope you find some good advice for such a personal decision.
I'm 4 days out from my LVA bypass surgery and so far amazing results! I have NO swelling in my right arm at all. It's been a challenge 1 handed! Surgery & recovery was 12hrs.... Crazy long day and a long ride home the next morning. Dr Chen was able to reconnect 16 lymph vessels in 4 incisions & is very optimistic I'll have long term relief. Get my stiches out monday -I'm sure it'll feel much better after that. Dr drew a great diagram of the work done...
0 -
Wow!
0 -
I recently read a new report posted on this site that has got me really thinking. I had one positive lymph node (micromets) found during my lumpectomy, but then no further nodal involvement after my BMX in January. Because of that and other favorable features with my diagnosis, my RO determined that I did not need radiation. So, I figured, great!!
This past weekend I read about a new study that radiation after mastectomy can benefit women with 1, 2 or 3 positive lymph nodes. In the past, this was a grey area. I'm thinking about going for a 2nd opinion on this. Just wondering if there others out there with 1, 2 or 3 lymph nodes who did not get radiation, or who did. I'm on hormonal therapy, but just wondering now if it's enough. I know that you can drive yourself crazy with all the "what ifs" but if it's something that would help my chances for survival, I'd consider doing it if it was recommended, and it's not too late.
Here's a link to the report:
0 -
I have read some studies that say even node negative women who do a lumpectomy plus rads do better than those who do a mastectomy without rads.....so it is something I think you should definitely check out.
0 -
Hello bc101,
I can share my experience. I was diagnosed with bc stage IIb (3 positive nodes), and had right breast mastectomy on March 12. My doctor includes radiation as part of my treatment (after chemo). I will also have hormonal therapy. Go and ask for second opinion (I would).
Good luck!
0 -
mjsgumbas - I am sorry so low to support you on this surgery which was a big surprise to read about. Loved the diagrams and love even more the science that brings you such relief! Pretty amazing stuff, medically speaking. Unless you did those drawing yourself during the cruise and don't remember LoL? I hope you feel better SOON. How bad was the lymphedema? Is it my chemo brain and you haven't talked much about this? Most likely my chemo brain! Gentle hugs...
Bc101 - I can see both sides. With 18 nodes gone, and breast gone there is not much to radiate left. And can see why you would consider doing more, even if not strictly medically necessary. My advice: Never pass on the opportunity to get second and third opinions. Best wishes whatever choice you make, and none will be easy.
Missing-mercury - my opinion fully agrees with Ruth's.
My update is headaches, and a renewed compassion for those who suffer them chronically. I have had headaches for about 2-3 weeks and find them pretty disabling. Headaches are a totally new thing in my life. I am in line for a brain MRI. I was told they will inject radioactive material in my head. I am choosing my birthday next week to have it done. Some answer I will have when people ask me if I did anything special on my day, ha!! Anyone here had this done?
Love to all, Nisa
0 -
I had 2 positive nodes that were also micomets. My breast surgeon, RO and mo debated on whether or not I would need rads. They finally said yes, however, I had already made up my mind to go for the rads regardless of what they said. I had a second opinion lined up and everything. I wanted to be aggressive considering I have a strong family history of BC.
If it will bring you peace of mind, get a second opinion.
0 -
BC101- Rads were recommended for me with 2 positive nodes. I start in a couple of weeks. Good luck with your decision!
0 -
Sorry about your headaches, Nisa. Hopefully you will get some answers, which would be a good birthday present!
0 -
Nisa - hope this test helps determine whats causing your pain. Hope they can then help provide you with some relief also. There's nothing worse than headaches or tooth aches!!!!!
I didn't update much on my LE on this thread so it wasn't your chemo brain
. It came on about 4 months after BMX and progressed rather quickly. I saw a physical therapist, wore garments & did manual massage for 6 months with no real positive results. My PS referred me to Dr Chen @ the U of Iowa (3 1/2 hrs drive). Since I was off for my hysto recovery I went for consult. He felt the earlier you address LE surgically the better the outcome. While on the cruise, my arm blew up and it took 10 days to get the swelling down - this convinced me to try the surgery. It was minimally invasive, I don't have any real pain and I can see a drastic difference already! Can't really use my right arm for 3 weeks but it isn't that bad. Looking forward to having the stitches removed and then checking my measurements & comparing to pre-op measurements!! It's so nice to have a wrist again and my fingers are normal!!!!!Hope you are feeling ok!!!!!!!!
0 -
BC101-
Rads was a given for my wife with 3 nodes and extranodal activity. But not only for the nodes but to also radiate the area where the tumor occurred and chest wall. We opted for Rads to give her the best odds for preventing it from coming back. I was worried about the Rads with regards to the effect on her skin and arm but it turned out to be easy for her to do with very little side effects. In the end we have peace of mind knowing we did everything we could to kill the beast. And Thursday morning is our first step in confirming that when we go for her mammogram almost one year from the day of her diagnosis.
0 -
Thank you all for your feedback! I really appreciate hearing from you and wish you all the best during your recovery. My appt. for the 2nd opinion is next Tuesday, so will be on pins and needles until then.
Take care!
0 -
Hi All, what is a time frame between surgery and to do rad?
0 -
Soriya: My RO told me that rads needs to be started within 4 to 8 weeks after surgery. According to her, research has shown that there is a chance for metastasis if there is a longer than 10 week wait post surgery.
0 -
I see. Thank you Girlstrong.
0 -
Thank you Ruth! I am hesitant to get more testing because every scan adds another bit of radiation that stays in the system, but this thing is not going away on its own so I have to do it.
Mjsgumbas - You are the first person I know of that LE started much after BMX. A PT, who showed me some exercises before discharge from the hospital, told me LE can show up even years later but I didn't really asked questions. I don't know if I asked this before but do you know why they took 24 nodes out? Do you have any left? I like that approach. I specifically asked in an email to my surgeon to take all mine out but my request was ignored. It just seems to me like an effective way to control spreading. All testing (even sentinel) has a margin of error. For example, a PET that shows NED still has an 11% error margin. So I'm thinking they should remove everything and be done with risk! Like my PET a few days before my surgery. It did not show any breast cancer where in fact I had multiple and large IDC tumors in both breasts. So much for my trust in imaging testing. Your LE must be uncomfortable but I wonder if it lets you sleep better at night?
BC101 - What made you change hormonal tx? Thanks.
Good night all. Hugs, Nisa
0 -
Nisa - I changed hormonal therapy from Arimidex due to severe joint pain. I took it for about 2 months before the pain became so bad I had problems walking, going up and down stairs, getting in and out of chairs, etc. I just couldn't handle it. My MO switched me to Aromasin and the pain went away in 2 weeks and I haven't had any problems since, thank goodness!
0 -
Nisa - I honestly don't remember the surgeons reasoning that he gave for removing all 24 nodes. But I guess with 1 positive, better safe than sorry. LE is a crummy side effect but I sleep better knowing they got rid of any chance those little critters are lurking in any other nodes. I had super-micro met to 1 node and am glad they are gone. I was told you can have 1 node removed & get LE or have 20 removed and never get it... there is no way of predicting who is "lucky" enough to get it.
Hope you are feeling ok!!!
0 -
Hi all, sorry I have been away for a long time; funny to return and see you all discussing rads, which I just finished on 3/26. I'll weigh in, if you don't mind. I had 2 positive nodes, one 8mm, one a micromet, so my MO said, you're getting rads. I was really not excited about it...I have very fair skin and I read about sarcomas, etc. But, once chemo was over, I figured: "I have done this much to preserve and restore my life and health. Rads, here I come." Everyone was GREAT where I did my treatment; the last week was a little tiring and painful, but I am already starting to heal. I can honestly say that the worst part of it all was having to drive 20miles each way at 7 AM for 25 consecutive business days to get the treatment, and getting some of my shirts messed up with the Aquaphor that I have slathered on 2x day. And, my RO said that I have reduced my 10 year risk of recurrence to about 7%. Music to my ears.
Mjsgumbas, congrats on getting through your surgery; so glad you have relief from the LE! And Hi to all the regulars and Welcome to the new folks. I'll post pics as soon as I can get some decent looking new ones.
0 -
Hello all.
Congrats to warrior70 on finishing rads. For all you newbies who just recently joined us here please allow me to share this with you. When my wife was diagnosed last April her and I were shocked and terrified. Everyone kept saying hang in there, it's along road but you will get through it. Well today we had our 1 year mammo and ultrasound and I am excited to say she is fine! No issues to report.
You ALL will get through this nasty disease. I know there are so many good things coming for BC. Hang in there! Stay positive and lean on each other for support as I did. Bless you all!
0 -
congrats warrior!!! One more chapter closed! And thank you for your thoughts
0 -
wonderful news jdbf3, wonderful news!!!!
0 -
0 -
So, the plastic surgeon did not think I was a candidate for implants due to my size. My bmi is higher than it should be. He referred me to a different surgeon for a DIEP as I am doing a double mastectomy and he felt if stomach muscle was brought up for both sides it would weaken my stomach too much.
The 2nd plastic surgeon was great, but said I was a good candidate for implants. I was a lot more vocal with her since I am not in shock so much now from diagnosis. She is emailing the first surgeon as we believe he misinterpreted what my goal was for results. It is better if he does it as my mastectomy is being done through the VA and the 2nd plastic surgeon would not be able to do that. So no mastectomy date yet, which has me stressed.
0 -
Missing - VA hospitals are great places with most physicians having affiliations with universities. I hope the surgery is scheduled soon. In the meantime, do whatever you can to de-stress. Walking and exercise can be helpful.
Mjsgumbas - How's your arm? I hope all is going well for you!
Joe - Great to hear you guys are doing so well. You definitely deserve the BC Husband of the Year award!
0 -
Yikes, missingmercury, that is stressful!
0 -
missing - all I can say is "WOW"!! I can't imagine such different responses and being in limbo. Hope you get your answers and date soon.
Nisa - doing very well thank you! Have a ways to go yet post op, but already good progress. Thanks for asking
0 -
Nisa,
You are very kind. That's one award any husband would rather not have!
We are rethinking the reconstruction. She was scheduled for May 8th but we talked about it last night and sorta came to the conclusion of why do we need to rush into this?? She deserves one summer season to decompress after what she went through. So we are considering postponing it until September.
0
