Posted on: Jul 25, 2012 10:37 AM
Hi all :)
I was wondering how many of you fine ladies out here experienced the surgery after your chemo?
Any experiences or stories or advice you'd like to share? bad or good, I welcome all stories :)
I'm due for a double and I'm sure the lymph node dissection of course- My armpit is a lumpy mess of lymphatic poo. (I found the lymph lump when this all started and never knew about the breast lump until the OBGYN found it- i have very lumpy boobs)
I don't see many surgeries after chemo here- and I'm a little scared and not sure what to expect. I am due for the TRAM flap operation sometime in November depending on my completion of the 12 taxols by mid October.
I have no idea of actually how much cancer is in these lymph nodes- but based on all the imaging and MRIs and ultrasounds I've seen- it's kinda huge and scary. white spots everywhere.
I'll find out the whole picture after surgery (and then I'm due for 5 weeks of rads after)
it's so overwhelming sometimes.
Posts 1 - 22 (22 total)
Jul 25, 2012 01:25 PM Momine wrote:
Mandala, I had chemo both before and after my BMX. I have not had any recon, but also had 30 rad treatments. They gave three weeks off between the last chemo and the surgery. Then I had another three or four weeks after surgery before I started chemo again.
The only other surgery I had ever had was a C-section almost twenty years ago, when my daughter was born. As I remember it, I had more pain and trouble with the C than I had with the BMX. That is not to say that it is a cake walk, it isn't obviously, but I was able to walk around pretty much as soon as I was out of recovery, which was nice. They did give me pain pills every four hours and I did take them. But it was not horifically painful at any point. It was more uncomfortable. Really uncomfortable. The discomfort continued on and off for a long time, pulling, itchiness etc, but actual pain was only a few days.
Jul 25, 2012 04:40 PM jenlee wrote:
Mandala, I had six months of neoadjuvant (before surgery) chemo. Chemo is no fun, but what I liked about having it before surgery is that they could keep checking on whether I was responding to the chemo. If an individual's cancer isn't responding, they can try another type of chemo or move on to another treatment or straight to surgery. Hard to know if it's working after surgery... Sending you a PM with more info...
Jul 25, 2012 09:21 PM mary625 wrote:
Mandala--I also had chemo before surgery. I don't think it changed my reaction to the surgery at all. I recovered from it on about the same schedule as those who had surgery first. One added benefit--at least I didn't have to worry about how I was going to wash my hair after surgery! Seriously, though, I do think the chemo was helpful on my nodes. I too have seen my nodes from MRI before treatment, and I would describe them as looking like a clump of spaghetti lit up all over the image. I still had a lot of nodes at surgery, but was told I probably would have had 25 positive without the chemo. Also having the chemo first gives you more time to prepare for the surgery and make your decisions. That said, there's nothing good about this whole thing, but you are not alone and there are others of us who have gone this same route.
Jul 25, 2012 09:30 PM jenlee wrote:
Mary, excellent point. Chemo gave me plenty of time to research and think about surgery and reconstruction. In my case, the tumor shrunk enough that I was given the option of lumpectomy and radiation, instead of mastectomy. In the end, I knew a wanted a BMX but was still debating reconstruction options with my surgeon and had a lumpectomy to "tide me over" so I had a few more weeks to decide on my reconstruction.
Jul 25, 2012 09:37 PM MandalaB wrote:
Thank you Mary- that's pretty much my boat. Full of lit up spaghetti. I suspect I have a nice cache in there. It bothers me so much that I can feel everything from my breast to my armpit and it is not small at all. I wanto to fast forward this chemo so bad and just get these things out of me....
Maybe I'm just focusing too much on the "what if?" sitting and wondering while it's in my body in possible large quantities. It's kind of weird holding on to it in the meantime.
It does not seem like the armpit is shrinking at all- but I have had some shrinkage with the main breast tumor. This is why I put it in the stage III forum because I feel like the nodes are what's occupying my head the most.
I never thought about the washing the hair thing either- lol- good point! and duly noted- lol.
Jul 25, 2012 10:11 PM jenlee wrote:
Sorry ladies, just realized I was posting in stage 3!
Jul 26, 2012 12:02 PM _Ann_ wrote:
Hi MandalaB. I'm not there yet but I'll be doing surgery after chemo. Just wanted to say hello since there aren't as many of us doing the neoadjuvant route. My sig still says IIb for the sake of optimism but I was told I'm "II or III" now. I have a big ol' grape-size lump plus a few smaller little ropy things in the axilla. Not liking those at all! As if the lump in the breast isn't scary enough.
I like the point about hair washing. :-)
Jul 26, 2012 12:16 PM MandalaB wrote:yeah. they found 3 smaller breast tumors in addition to the main tumor in my right breast in my bilateral MRI right before chemo - like days before. With every test and doctors appt. being 50 miles from where I live- I opted not to biopsy them because it was just too much in such a small amount of time since dx. And I'm doing the chemo anyway. Just completed 9 weeks of DD AC- oof. So i'm being bombed. I just wonder how much this chemo will bring it down to something not so damn large.
Jul 26, 2012 05:47 PM jennyboog wrote:
I did BMX & ALND after chemo...large tumors, needed to be shrunk for surgery. I had a good surgery experience, clean margins and no problems. Chemo was the absolute worse thing for me, everything else went much better. I wasn't as sore as I thought I would be, drains were the worse part. Having to wear them, having to empty them and having them removed wasn't pleasant. I would suggest make sure you get some PT on the arm or make sure you work it out better than I did. I guarded mine and it got very stiff so, when I went into rads exactly 1 month to the day from surgery they had to tape my arm into the sturrup. It hurt really bad and went to sleep immediatly. I hope all goes well for you, let us know.
Jul 30, 2012 01:16 PM tonya15 wrote:
Hello, I have not been diagnosed as of yet, but I do know through biopsy that I do have cancer in axillary lymph node. I have a supraclavicle lymph node that is hard so I believe I will be staged at 3c. That being said, did you have surgery on your lypmh nodes above clavicle bone? I am very concerned about not being able to get it out of me. Or does chemo kill all of the cancer in it and you dont have to get it removed? I go to have a pet scan this Thurs so will know more then. Anything you might know would be helpful. Thanks!
Jul 30, 2012 10:38 PM mary625 wrote:
I don't know if they remove superclav nodes or not, as mine were clean, but they can give them radiation as I had in that area. My order of treatment was chemo, surgery and rads. Yours may be different, but it sounds like you may be seeing a radiation oncologist.
Jul 31, 2012 12:10 AM tonya15 wrote:
Thanks for responding! I believe my oncologist wants me to do chemo, then surgery and then radiation. I just wasn't sure if some neck lymph nodes could be removed? I just want the cancer out of me! This is so scary and I am so tired of crying and being angry.
I hope everything is going great with you. Everyone tells me to be positive but as you know, it is hard. Do you know of any good threads on here that are encouraging? Thanks again, Tonya
Jul 31, 2012 02:55 PM, edited Jul 31, 2012 02:59 PM by jennyboog
Hi tonya15...I didn't have supraclavicle but did have intermammary + nodes and they don't take those. They do use chemo to get them and blast them with rads. As of my last scan they were clear and chemo/rads was successful, I was 2 yrs out on the 28th. I hope you don't have to join us here but if so it's a great forum with loads of support and info.
Jul 31, 2012 07:01 PM mary625 wrote:
Tonya--there's a thread above this one by LindaLou called her annual report that is very inspiring! There are all sorts of survivor threads to be found here.
I am doing well. I am just 3 months out of treatment, so I can't be an inspiration for long-term survival YET, but I can tell you that I really feel better than ever despite everything. I am also told often that I look great. :)
Jul 31, 2012 11:18 PM tonya15 wrote:
Thanks Jennyboog! I hope radiation works on nodes! Glad tou are doing so good! So how painful is radiation on the neck area? Did you put anything on neck to help reddness or any irritation? And how was your experience with the chemo? I am so scared of it all.
Aug 1, 2012 03:24 PM Laurie09 wrote:
Mandala, I also had neoadjuvant chemotherapy prior to a mastectomy. I think historically it wasn't very common but is becoming more and more common.
My understanding is that it doesn't change the prognosis unless you need to shrink the tumor prior to surgery.
What I liked about having chemotherapy first, as others have stated, is that I got to see how my cancer responded to chemotherapy. Also, it was nice to get the hardest part of the treatment over first.
Aug 1, 2012 08:50 PM mary625 wrote:
Tonya--the nodes in the neck area that were radiated were called the superclavicular nodes. However, I have recently noticed some skin color changes in the area of my neck where there are nodes that doctors frequently check. I wasn't told that they were being radiated, but am wondering why this skin discoloration has occurred similar to, but not the same as the other areas that were radiated.
I had chemo first, and my experience was better than most. My first A/C treatment was the hardest, mainly because my then onc told me to wait for breakthrough nausea to take any oral meds. I then got more meds prescribed, and I took them on a planned schedule for 3-4 days even though they were very fatiguing. I would say my main side effect, besides hair loss, of course, was fatigue. I had dose dense, i.e., every two weeks, and the 2nd week I was fine, but the first week, just so tired in a way I can't explain. Then after 4 A/C's, I switched to 4 Taxols. Again, the first was the worst, but it still wasn't bad. I had to adjust to the heavy pre-meds of steroids and the couple of days of neuropathy following each treatment. The neuropathy was worst on the first treatment. My best advice it to read the sticky posts in the Chemo forum. I followed all of the advice there for shopping lists, managing side effects, etc., and believe me, it's not stuff the onc or the chemo staff is going to tell you. Also, I had no problems with the Neulasta shots.
Physically, rads was a piece of cake. Very easy. The problem with rads is you've got to show up there every day for 6.5 weeks and face your cancer and other patients on a daily basis. It's very overwhelming and the hardest part emotionally for me.
Please feel free to continue to ask questions or PM. I'd love to give you support. I had many days where I never thought it would end or that I would be where I am now. I understand.
Aug 1, 2012 10:40 PM tonya15 wrote:
Mary625, How many neck nodes did you have radiated? Did you have any axillary rad? I was wondering if you take the axillary nodes out, do you still have rad on this area? Thanks again for all the info. It really helps me. This fri. I find out my pet scan results so I am so nervous and my anxiety is out the roof!!!!! I take it you had a port in for the chemo? How was that? I really just want to get started so I can get this cancer out of me. when I look at my breasts, I am beginning to hate them. Did you have breast implants put in? I don't know how I feel about that yet. I think I want both breasts off so I dont have to worry about it coming back in the other breast in the future. What made you only remove the one breast? I think I read that you had a mx only on the right? Sorry for so many questions. I am just so scared about this whole ordeal ahead of me.
Aug 2, 2012 06:50 AM mary625 wrote:
Tonya--I don't know how many nodes were located in any area. Everyone has a different number, and I think they just head for the general area. My axillary nodes were removed, but the area was still radiated. I had both breasts removed. I had benign changes in the other breast that were still be biopsied after chemo. With ILC, which I have, recurrence is very likely in the other breast, so all advice was to do it. I did not have reccon. The options did not appeal to me that much in appearance, plus I did not want the extra surgeries. I have not looked back on either decision. No change of mind. I do have some difficult days where I miss what's not there, but I realize that no other decision would have changed that.
I am wishing the best for your PET scan results!
Aug 2, 2012 09:28 AM Momine wrote:
Tonya, of course you are scared and I am sorry you have to go through this.
I chose a double mastectomy. I had ILC, which is quite likely to recur in the other breast. There were already some suspicious changes in the "good" breast, although the docs swore up and down it wasn't cancer. Once they explained what the follow-up would be on the good breast, I decided to just get rid of it while we were doing surgery anyway. I have no regrets.
Initially they were telling me I could get recon at the same time, but once they saw how serious it was and realized I would need extensive rads, they advised against it and told me I would have to wait. At first that was a bit hard, but now I am grateful for the extra time to think it over and look atbthe different options,pictures etc. I am almost a year out from the surgery, and for the time being I don't think I will ever get recon. I really am not convinced by any of the methods I have seen, and I have no desire to have more surgery, possible complications etc. Also, I am very picky about how things look and every time I see a pretty recon job, it has been done as part of a prophylactic or early stage skin-sparing BMX. In other words, I sincerely doubt that given my situation, I would end up with a job that would be acceptable to me.