January 2016 Surgeries

Hi Ladies -

Well as much as I was complaining up until now. I am having a celebration today after seeing BS & MO this afternoon.

I saw the MO first but will start with BS. I sent a copy of the email exchange with the the BS nurse to the nurse navigator so when I went to see BS after MO, another one of the center's nurses took me into the exam room and my BS said I am healing very well. The area of concern that I was worried was an infection or even possibly shingles near the drain was a reaction to the tape that she had used to keep the drain in place that had gotten blistered. She removed the tape on both sides and use a non-stick pad near the drain instead. She told me the blisters may pop but not to be concerned. Based on my drain log, she said the left drain could come out today (day 8) but right one was not ready yet so she wants to wait to Monday (she only has office hours M&W) and remove them both. She told me that that she will remove them (yeah not the mean nurse), steri-strips will dissolve on their own. reviewed final post-op final path report: as expected, no surprises - clean margins, and said on Monday will give me exercises and will see me in 6 months. She did tell me to get more rest than I have been/.

But when I met the MO first, I was thrilled to learn she does not feel it is necessary for me to go on AI after we discussed side effects, my fibromyalgia and quality of life concerns. She said I had a very low Very low risk of recurrence and if BS agreed that we will do surveillance and I will work on lifestyle changes - weight loss & exercise - to reduce risk. Doing a happy dance. She said I can think about this and Iif I want to try an AI, let her know and I will also see her in 6 months as well.

I was there for 4 hours and had a friend over for dinner who stayed way late so I am exhausted & need to go to sleep.

Thinking of you all and looking forward to drain removal on Monday

Jr and Balthus - great news on your path report! I'm still waiting....

Jr, I'm in DE so also keeping a close eye on the weather. My first apptmt with the BS is Monday morning at 9:00 am in Baltimore. We had planned to drive over and spend the night (it's about 2 hours from home) , but not sure how the roads will be.

My apptmt with PS nurse practitioner is today. My drains are putting out <20 cc each per day. Hoping to get at least one out.

Gardnergirls and Wainwright - thinking of you today.

gardnersgirls- I'm going to Johns Hopkins. I called and they were able to change my appointmt to Tues. Best wishes today- are they doing the exchange for a permenant implant?

grandmax3 unfortunately I'm having my expander replaced. They had to take it out in November because I developed an infection in October. starting over on the right side. The plastic surgeon is going to fill the right today the same as my left. I was only filled twice then the infection started. Talk to you later.....off to the hospital surgery is at 1:00.

hi all

I'm glad to see everyone doing so well.

I finally heard from the RO. He says that since my breast will get radiated when they radiate my lymph nodes they decided. I can't do the nipple sparing bmx.

So my surgical plan has totally changed. Instead they are going to go straight to BMX and axillary dissection and try to go straight to implant. My surgery is a week from today, so I'm running around trying to let work folks know I'll be out longer and let family know.

I met with the MO this morning. My bloodworm came back saying I'm anemic (which explains why I feel so weak and tired). They think I might need a blood transfusion. I also have an upper respiratory infection so I was given antibiotics to try and knock it out before surgery.

This has all gotten to be very overwhelming...

I agree with Coolgrammie. You are an awesome lady, SVGSurvive. I do not know how you do it. I ended up going direct to implant. It was a decision made by the PS in the operating room. I am really pleased with the result. On the constipation front, I think justprunes worked for me because I stopped narcotics on the morning after surgery because they made me itch something fierce. Since then, I have been using Tylenol and Valium. I actually think the Valium is causing the opposite of constipation for me now. Anyone else had that reaction to Valium? Also wondering if anyone else needs something to sleep, and if so, what works best?

i am keeping you all in my thoughts. I know we all still face challenges. I am meeting with MO again on Monday. My oncotype was 18, so he has recommended 4 rounds of TC. Just typing that sentence fills me with dread.

Drains are out! Healing well, nipple looks good. My BS also stopped in because she got the pathology report. Good news is that the sentinel node is negative. Bad news is that the nipple has to go, they found cancer in the core. Also margins of specimen were positive so likely will need radiation. And finally, the 2 small areas seen on MRI are actually 1 big tumor measuring 5 cm. I pretty much just stopped listening after this.

I just got back from my post-op appointment with PS, and I found out why it was more extensive than just an exchange. As we expected, Plastic Surgeon had to do a lot of "pocket work" on both breasts. Also, PS removed some fat tissue that was just under the skin on the lower halves of both my breasts. The fat was keeping the skin stiff and slowing down the healing. The fat was "not exactly necrotic" but it was "definitely not happy" where it was. I don't know how much total he removed, but it was a lot. PS said he removed about 50 grams more from the right breast than the left. So that's why he put a bigger implant on the right side (495 gm) than the left (450 gm) to even them out. PS thinks the breasts look even now, or perhaps the left is possibly slightly bigger.

Both breasts are really swollen, but are starting to shape up much better. I am happy with the results.

SVGsurvive: I saw my nipples about 3 days post-BMx when the dressings were changed. My nipples were very bruised and purple after BMx. Be prepared for that: it is completely normal. I just saw them today, 3 days post-exchange, when the nurse took off the steri-strips and they looked pretty good.

I empty my drains twice a day, and try to milk/strip them at the same time. I find it frustrating because the liquid seems to go back up. I didn't make a big deal of rinsing out the bulb. I used water most of the time. I only used the rubbing alcohol toward the end as the bulbs were getting nasty.

A "scopolamine patch" is a patch of anti-nausea medication.

I think "doing too much" is whatever causes yourself pain.

Mmshea- you are definitely at the right place for support! I was diagnosed with ILC in Nov. and had a mastectomy last Wed. I had never heard of ILC when I was diagnosed and did not know what to expect. Since then, I have tried to learn as much as I could, and most of it from this web site and from the women (and men) who have posted on the discussion boards here. There is a whole thread devoted to ILC but if you have any questions or need to vent, feel free to send me a personal message.

ok, now that I have had a few moments to calm down and took a look at the pathology report, I see that the positive margin is the area under the nipple, which has to go anyway. I always knew that was a possibility. The BS did recommend that I talk to the radiology oncologist just because the size of the tumor is borderline T2-T3. I've already consulted with a RO (back when I was still considering a lumpectomy) and will do whatever she recommends.

I will be having the right breast removed at some point as well, just because I can no longer trust any imaging diagnostics. Even the MRI did not see the huge 5cm tumor, but only 2 small spots on the edge. I feel pretty calm about this. I knew that I would probably do this at some point.

gradma3x sending good vines & vibes your way.

Thx JulieAggie03, that's good to know cause it's very big and scary in my head! I do have a question for you. On your prophylactic side did you opt to check your sentinel nodes? I'm trying to decide if I should or not. I swear the first time I met with my BS she said they would check that side too because they would never get the chance again (my partner heard her say it too). But when we met with her today she said no it wouldn't be necessary but I can opt to do it if I want to. So now I have to decide.

Balthus - what a beautiful photo! Thank you. I hope you are feeling better.

JulieAggie and 7of9 - thank you for the encouragement - knowledge is power!

I made an appointment with the RO but not until Feb. 10th. Hoping I can speak with her before then. If I'm having a prophylactic MX, is it better to wait until after surgery to have the rads? Don't they mess with your immune system?

SVGsurvive - wow! What a great summary for our group! I had NS surgery but was not wrapped. There was just a clear dressing over the incision so I could see my nipple right after surgery. It started to look a little purple around the edges but the PSNP said it looked great today (unfortunately I will lose it anyway!).

Getting the drains out did not hurt. I took a half of a Tramadol before the appointment just in case but there really was nothing to it.

As for the constipation, I think it was the Milk of Magnesia that did the trick. Either that, or I had just waited long enough to get all of the anesthesia/pain meds out of my system.

SVGSurvive - I stripped the drain tubes every time I emptied the bulb. I never washed the tubing or bulb and was told not to wash with water anyway because it could introduce bacteria into the wound.

Mominator - I asked the PSNP today about drains for the exchange surgery and she said they are usually not needed. Maybe you have them because of the extensive pocket work they did? Hope you are feeling better

mimiD and goldenbride - thinking of you today and sending healing thoughts and prayers.

Grandma3X, you have been optimistic and brave. The imaging studies are very imperfect. I am very sorry to hear that you are facing additional surgery. I know that if there is a silver lining, you will find it. I will send good thoughts your way. Some women don't want prayers. If you do, let me know here or in a PM. If not, I will communicate with the universal energy field.

SVGsurvive, my fibromyalgia is awful right now, and it is hard for me to review and respond to each post. I am amazed at your long and very thorough post! Thank you for doing the hard work for all of us.

Gemma, I have been in the waiting rooms many times with my mother. She has Stage IV breast cancer. I have seen many women sitting quietly but obviously worried. I think your feelings are very natural. Curling up sounds like a great option to help deal with stress. I think xanax plus prayer plus curling up plus Netflix might work for me.

Somebody asked about radiation. I believe you get the same total dosage of rads regardless of the schedule. I have heard that some women have fewer side effects with the four week as opposed to the six week. However, I am no expert, and I am not a radiation oncologist. I would definitely ask the RO what he or she thinks is the best option for your specific situation.

Bathus, it sounds as if your path report was very good! I have had to push for an alternative solution that turned out to be breast reduction surgery to lower my risk of breast cancer due to not being a candidate for radiation or chemo preventive drugs. I hope I fare as well as you have. I am heading down the path to surgery. The American Cancer Society got me an extra night at the Embassy Suites Hotel so I would not have to travel the day after surgery.

Drains, Drains, Drains. I have a pre op appointment with the clinical care coordinator. The oncology nurse told me that I would receive education on the drains. I hope to avoid getting conflicting instructions. I am very glad I joined this thread and have some advance notice.

Somebody mentioned whisky. I have added up the days I was on Naltrexone, and they do not amount to long term use after all. I took high dose Naltrexone off label for fibromyalgia pain but went off after I saw my medical team on November 12. So, maybe I can take narcotics. I will have to see what the anesthesiologist says. I don't do well on narcotics anyway but sometimes they take the edge off the pain for a day or two after surgery.

I feel bad that I cannot do a better job of listening and responding on this board. It was an exhausting week during which I went with my mother and brother to see her MO. The oncologist has been sick, and my mother's care veered off course while she was seeing another doctor. We got everything set right but she may have some serious problems now due to the other doctor's neglect. I don't know if all of this delivered another blow to my nervous system or if I am simply having a terrible flare.