snappy
Survivor
- Joined
- Apr 15, 2002
It is kind of late so pardon me if I ramble, but I thought I would post about my experiences for Marcij.
First, how did the genetic counseling go today?
For what it is worth, I had multiple spots of non-invasive DCIS, and a small area of invasive cancer. The term used by the surgeon was multi-focal as the areas of DCIS were in different quadrants, right under the nipple, and in the upper outer section both in the left breast, all discovered via the stereotactic needle biopsy. Because of being multi-focal, my only real option was a mastectomy, as not much of a breast would be left after removing all the areas of concern with wide enough margins. The surgeon also did not recommend the sentinel node method of testing nodes because the DCIS was so dispersed.
Ended up with about 30 anxillary nodes removed, fortunately all were clear of cancer cells.
I was diligent about the exercises that Linda referred too, and continue to be careful about having blood taken, blood pressure taken, cuts, burns, no tight sleeves or jewelry etc. on the affected arm. So far only very mild swelling and no lymphedema. I received a good deal of instruction about how to prevent lymphema at the hospital when I had the mastectomy.
I was told it was best to wait for reconstruction (I suspect the doctor anticipated that much larger areas of invasive cancer would surface when the breast was biopsied which fortunately did not materialize), but I did have reconstruction 2 years later in 2006. Because little skin was left after the mastectomy, the three plastics I talked to recommended the free tram flap, implants were not an option.
I did not have radiation or chemo since the size of the invasive component was so small and the nodes were all clear.
The free tram flap or the DIEP flap which is becoming more widely available as more plastics have been trained to do them, is pretty significant surgery. You do get better results cosmetically if you have the flap at the time the mastectomy is done (called immediate reconstruction). The breast surgeon will leave more skin and the plastic surgeon can hide the scars more readily.
I would be happy to share more of the details of the flap. I would try and see if your plastic surgeon has pictures of some of his work for this particular type of surgery so you can get idea of what is possible.
As Linda says, a lot of this stuff is pretty amazing. Although the stomach wound where the flap was taken from was very painful for several weeks, I thought having the reconstruction was more than worth it. I was amazed at the change from a very concave hollow chest cavity after the mastectomy to a nice sized and shaped breast. It is so much more comfortable for me than the overly large prothesis I used for 2 years. My mastectomy scar was very high but the plastic surgeon expertly built it up somehow underneath with my tissue so that the scars are now below the bra line. He also did a very good job reducing and lifting the other side.
It was a lot of surgery, with a very large (hip to hip for me) stomach wound, the opening of the mastectomy scar to place the new breast, and the reduction of the unaffected breast. I needed my husband home with me to help me 24/7 for about 8 days and then I chased him back to work. A very tight binder which is the girdle from hell is provided to support the stomach as it heals. It was very uncomfortable but I found it to be a lifesaver and helped control the pain to some degree.
I was back volunteering at my youngest daughter's school about a month after surgery. I was not working at the time so that made my recovery easier.
Please feel free to ask any other questions.
I can't address the wicking material for sleeping in. I had hot flashes pretty bad with taking the Tamoxxifen. I found lightweight cotton woven (no knits)material the best sleeping material. I have a number of Eileen West nightgowns and robes in various states of disrepair. I wear them year round since our winters are so mild here in south Louisiana.
You will want tops that button up the front. I really would not invest much money at first as my experience was there a good deal of fluid for the first week or so. If you have drains, it is good to have something with pockets that you can either put the drain bulbs inside the pocket if they are positioned right or pin them on to the pocket. I also wore loose men's shirts
It was fun to get new bras, give away the mastectomy bras, and dress like a girl again once I healed up more.
Usually the tram flap involves several stages, first the construction of the new breast, then later when you are healed a good bit, the nipple can be constructed. Different plastics hav different methods of creating the nipple, but they all net the smae result. Later if you want, you can get a tattoo to make the aureola look more real. Even that was done in the plastic surgeon's office by one of his nurses for me. I believe i had that done at about 6-8 months afterwards, and then I had a redo later as it faded some the first time.
The only real pain in all of it was the stomach wound. I bet there have been improvements since I had mine, and I believe the DIEP flap, although more difficult for the surgeon, is easier on the patient. I was lucky to only need narcotic pain meds for about 4 days after the surgery. Tylenol was much easier to tolerate, but I took a lot of it I have to admit.
Hope all of that is not too scary, but I always believe knowledge is power. Feel free to ask more or pm me if that is more comfortable for you, Marci.
I need to sign off and get to bed.
First, how did the genetic counseling go today?
For what it is worth, I had multiple spots of non-invasive DCIS, and a small area of invasive cancer. The term used by the surgeon was multi-focal as the areas of DCIS were in different quadrants, right under the nipple, and in the upper outer section both in the left breast, all discovered via the stereotactic needle biopsy. Because of being multi-focal, my only real option was a mastectomy, as not much of a breast would be left after removing all the areas of concern with wide enough margins. The surgeon also did not recommend the sentinel node method of testing nodes because the DCIS was so dispersed.
Ended up with about 30 anxillary nodes removed, fortunately all were clear of cancer cells.
I was diligent about the exercises that Linda referred too, and continue to be careful about having blood taken, blood pressure taken, cuts, burns, no tight sleeves or jewelry etc. on the affected arm. So far only very mild swelling and no lymphedema. I received a good deal of instruction about how to prevent lymphema at the hospital when I had the mastectomy.
I was told it was best to wait for reconstruction (I suspect the doctor anticipated that much larger areas of invasive cancer would surface when the breast was biopsied which fortunately did not materialize), but I did have reconstruction 2 years later in 2006. Because little skin was left after the mastectomy, the three plastics I talked to recommended the free tram flap, implants were not an option.
I did not have radiation or chemo since the size of the invasive component was so small and the nodes were all clear.
The free tram flap or the DIEP flap which is becoming more widely available as more plastics have been trained to do them, is pretty significant surgery. You do get better results cosmetically if you have the flap at the time the mastectomy is done (called immediate reconstruction). The breast surgeon will leave more skin and the plastic surgeon can hide the scars more readily.
I would be happy to share more of the details of the flap. I would try and see if your plastic surgeon has pictures of some of his work for this particular type of surgery so you can get idea of what is possible.
As Linda says, a lot of this stuff is pretty amazing. Although the stomach wound where the flap was taken from was very painful for several weeks, I thought having the reconstruction was more than worth it. I was amazed at the change from a very concave hollow chest cavity after the mastectomy to a nice sized and shaped breast. It is so much more comfortable for me than the overly large prothesis I used for 2 years. My mastectomy scar was very high but the plastic surgeon expertly built it up somehow underneath with my tissue so that the scars are now below the bra line. He also did a very good job reducing and lifting the other side.
It was a lot of surgery, with a very large (hip to hip for me) stomach wound, the opening of the mastectomy scar to place the new breast, and the reduction of the unaffected breast. I needed my husband home with me to help me 24/7 for about 8 days and then I chased him back to work. A very tight binder which is the girdle from hell is provided to support the stomach as it heals. It was very uncomfortable but I found it to be a lifesaver and helped control the pain to some degree.
I was back volunteering at my youngest daughter's school about a month after surgery. I was not working at the time so that made my recovery easier.
Please feel free to ask any other questions.
I can't address the wicking material for sleeping in. I had hot flashes pretty bad with taking the Tamoxxifen. I found lightweight cotton woven (no knits)material the best sleeping material. I have a number of Eileen West nightgowns and robes in various states of disrepair. I wear them year round since our winters are so mild here in south Louisiana.
You will want tops that button up the front. I really would not invest much money at first as my experience was there a good deal of fluid for the first week or so. If you have drains, it is good to have something with pockets that you can either put the drain bulbs inside the pocket if they are positioned right or pin them on to the pocket. I also wore loose men's shirts
It was fun to get new bras, give away the mastectomy bras, and dress like a girl again once I healed up more.
Usually the tram flap involves several stages, first the construction of the new breast, then later when you are healed a good bit, the nipple can be constructed. Different plastics hav different methods of creating the nipple, but they all net the smae result. Later if you want, you can get a tattoo to make the aureola look more real. Even that was done in the plastic surgeon's office by one of his nurses for me. I believe i had that done at about 6-8 months afterwards, and then I had a redo later as it faded some the first time.
The only real pain in all of it was the stomach wound. I bet there have been improvements since I had mine, and I believe the DIEP flap, although more difficult for the surgeon, is easier on the patient. I was lucky to only need narcotic pain meds for about 4 days after the surgery. Tylenol was much easier to tolerate, but I took a lot of it I have to admit.
Hope all of that is not too scary, but I always believe knowledge is power. Feel free to ask more or pm me if that is more comfortable for you, Marci.
I need to sign off and get to bed.
). I've had some issues with mild lymphedema in that arm, and they also radiated that whole area which, between that and the surgery, has left the area pretty tender and sore, even years later. But it beats the cases of severe lymphedema that I used to see years ago when they routinely took out all the lymph nodes in the axillary area (and the lymph fluid had nowhere left to go). It's important to do the exercises they prescribe after your surgery so that the lymph fluid can reestablish a way to get back up from your arm to the rest of your body. Surgery and radiation help abolish those original pathways somewhat. It's a pretty amazing technology, though, when you think about it. Will they do radiation with you?
. I can't wait - the TE's are very uncomfortable. I was going to get a saline implant but decided against it because the feel would be too much like the TE so I decided on the regular silicone implant - not the gummy. They all have their plus/minus points and none of them have everything that I would like. I wanted to just transfer the fat from my thighs to my chest but evidently they don't do that 
Although there is so much there, then I would be lopsided going the other direction 
. Wishing you well with whatever you choose.
.
I guess there is always some consolation in the fact that they are being careful, but I know what you mean about having more test.
Still waiting to get the next set of scans scheduled. Blah.
. Hope you get them out soon.
. So - not going to worry about it.
