April 2018 Surgery Support Group

Engine104

Hi LAMinders: I think they will medicate the area with pain meds as well. I've read that they do that. I know my wife had that with her knee surgery a few years ago. It really helped. I think I will vacate our bed for the guestroom and give her extra pillows. Thanks for your wishes. I'll make sure my wife reads it.

Dear OceanBum, Thank you so much. I'm glad your husband is there for you.

I am very thankful that my employers here at Pepperdine University and specifically within my academic division are as supportive as they have been. That has made a big difference. The semeter is over after next week, so this is one of our busiest times of the year, but my boss (Our academic divisional dean) has told me to takle as much time as I need.

Dear Stephilosphy, I'm so glad to hear your pathology was clear. We are hoping for the same.

Continued wishes for easy recoveries for everyone!

ScubaMom24

My stacked DIEP flap surgery got moved from tomorrow to 4/30, so have some more time to plan (and be anxious :-), but am in good spirits, blessed by a wonderful partner who is an MD/researcher so he's been sharing a ton of info with me and helping me stay calm and be strong. I was inspired today by all the runners here in Boston who stayed strong to the finish despite some wretched conditions.

LisaK12 - Hope your recovery is going well and your drains will be out soon! I'm dreading those!

Engine - I am thinking of you and your wife, how lucky she is to have you, especially now. Lots of prayers.

Paula - I'll be thinking of you, too, and sending healing thoughts as I approach my surgery date.

Stenphilosophy - That is GREAT news on your path report! Hope you continue to mend.

Oceanbum - I hope Friday goes well for you, you've been through a lot!

AbbeyNormal

Engine- Thinking of you today since I know today is your wife's surgery!

I am now 5 days post-op from a double mastectomy with TE's. My sentinel node biopsy came back clear- which was an enormous relief. The pain isn't that bad- I'm more sore than anything. I'm getting sorer every day, but I hope it peaks soon. I'm only taking 600 mg of Ibuprofen and a Diazepam (Valium) every 6 hours.

Here are a few things I've learned:

-You're going to pee blue for the first few times, then it's a lovely teal color for awhile. Tropical, even LOL

-The 4 drains I have really do suck (literally LOL)

-Pushing water and taking stool softeners are EVERYTHING

-Make sure you get up and walk around at least a few times a day

-This forum and all of you have helped me prepare immensely. I have gotten more information through here on what to expect than my actual doctors and nurses

-The kindness and outpouring of love from strangers makes me cry just typing this

I am so lucky to have the support of my wonderful fiancee, who is literally doing everything for me (I mean EVERYTHING) while I can't do it for myself. I hope everybody's recovery goes smoothly and that you find peace and calmness in the process, because it IS a process. Hang in there!

Anonymous

Lol Abbey!! I'd forgotten about the blue pee!! There will be blue poop, too!!

Yes, this forum has been SO helpful!! I just wish I had found it sooner. I found it after I had nearly finished chemo and was preparing for my surgery.

joy2

Engine104 good luck to your surgery today. I wish you all the best and fast recovery. AbbeyNormal so glad that your sentinel node biopsy came back clear. I wish you fast recovery and good luck in everything else. I have my on 25th and i am being nervous as my days are getting closer. Yes, this forum has been very helpful to me too. I found out when I was searching to get some info when I found out that I am a BRCA1 positive and doctors recommended prophylactic mastectomy. This forum is awesome. Thank you all for sharing your experiences here.

LisaK12

Thanks all!

Got two drains out yesterday -- woo hoo! Hope to get the other two out next Monday. Treated myself to a hair wash and blow dry at a local spa today, which felt great.

Pathology report showed (1) sentinel node was clear (yay); (2) no invasive cancer in the breast tissue (yay); (3) DCIS was present on 9 out of 45 slides (one-fifth) of the tissue samples from my left breast, which I doubt they could have removed successfully with a third lumpectomy; and (4) while DCIS was not found in my right breast, lobular carcinoma in situ and atypical ductal hyperplasia -- areas of abnormal cell growth that increase a person's likelihood of developing invasive breast cancer later in life -- were present in my right breast as well as my left. Multiple intraductal papillomas were present in both breasts as well, which are also markers for increased risk of breast cancer. So I am feeling very good about my decision to have a bilateral mastectomy. While it wasn't an easy decision, it was the right one for me. And every day I feel a little tiny bit more my normal self.

Good luck to everyone who is going through this and I wish everyone the smoothest possible recoveries.

Engine104

Hi everyone,

Just got home at 9:00 PM our time. Long day.

Janice did well with the surgery. No issues. They were not able to get any lymph nodes due to her lumpectomy 22 years ago. The surgeon said that wasn't a big deal. We should get the pathology report back on Friday or Monday. Praying for that to be good.

One drain. Pain not too bad so far, She slept in the car on the way home and went right to bed with one Oxy

Thank you all for all your help and support. It is very much appreciated.

-Larry

star2017

at the hospital. Prophylactic mastectomy and exchange today

RiRi11

hello my April Sisters!

I just recieved my surgical pathology report and my margins are clear and my node is negative!

I meet with my MO in 3 weeks. I am so relieved.

Good luck and healing hugs to you all!

Engine104

Congrats RiRi! That is great news.

My wife's report should be back by Friday, Monday at the latest. Hoping for the same good news.

RiRi11

Thank You Larry! Prayers and good vibes coming your way

star2017

They did the right exchange and left prophylactic mastectomy but had to place a tissue expander on the left rather than the implant unfortunately. Hopefully we can expand and do the left exchange after radiation ends in July.

I don't feel any pain on the right exchange side but the left mastectomy side definitely hurts more than expected, so I've been asking for meds.

I experienced a little nausea and lightheadedness, but I feel generally better now.

mamina5459

Hi all. I'm scheduled for a bilateral mastectomy and sentinel node biopsy on April 23rd. It's finally just sinking in and I don't know what to expect. I guess this is where your faith and hope come in.

Engine104

Hi mamina5459,

My wife had a single mastectomy on Tuesday. They did a sentinel node biopsy, or tried to. She had a lumpectomy 22 years ago and they took most of the nodes in that arm.

She doing ok. Some pain, not much, but mostly sleepy. So far, she said it's not too bad.

timetobebrave70

I am having mine the 24th. Good luck to you!

blessedinthismess

I have had the lumpectomy, but found out that the breast cannot be saved. This is all new to me, so I can’t give all the specifics. I am opting for a bilateral mastectomy with reconstruction. I don’t have a date for the surgery yet, but know it will be in April. I am confident about my choice, but the waiting and anticipation of surgery and recovery unknowns is causing major anxiety. I’m hoping that the experiences shared will give me some insight on this journey that I am about to

Jennifer522

I am now 9 days out from double mastectomy with expanders placed. I got 2 of the 4 drains out yesterday and the other 2 will probably be Monday. And I got my first expander fill and that was easy pain free.

It honestly has not been too bad as far as pain goes. And I don't think I look that bad. My husband's co workers have been delivering us dinners and he joked I need to look worse. Everyone is commenting how good I look.

I am not driving yet, lifting my arms above me head or doing any repetitive chores like dishwasher or laundry.

If you get nausea easy, ask for a prescription for a Emend pill before surgery. I had to take 3 hours before my surgery started and it did the trick. The anesthesiologist told me a lot of people get nausea from anaesthesia and there is nothing he can do to prevent it. Make sure you pack eye drops too especially if you have been through chemo and you have no eyelashes.

ReadyAbout

blessed, I'm doing the same thing. Had lumpectomy, found that radiation could be potentially harmful due to another issue, so I am doing bilateral mastectomy on May 16. Also, my tumor was initially diagnosed as DCIS, but when it was sent out for Oncotype, the Oncotype lab pathologists diagnosed it as invasive and it turns out they were right. So now I have to get the correct Oncotype test, a HER2 test, and go back to the MO to talk Tamoxifen. I also have to have sentinel node removed for biopsy while they are doing the mastectomy. The pathologist's misdiagnosis has drawn this thing out an extra month and complicated things a bit. In his defense, I have papillary carcinoma, which is rare and a challenge for pathologists, but gee whiz, the man probably makes 10 times my salary and I expect competence. I have had many, many good news/bad news scenarios since finding the lump a few days before Christmas. My father is a surgeon and he once told me that it's amazing what patients will endure if they know the specifics and the exact recovery period, but the unknowns will thrown them into a tailspin. I have to remind myself that many women have much worse, more aggressive cancers and that I am so fortunate to have caught it early.

mamina5459

Thanks Engine104. Healing vibes to your wife.

Good luck to you too, timetobebrave70.

Blessedinthismess, it shall be well.

Thanks Jennifer522 for the update. I'll feel more confident going in.

ReadyAbout, I feel your frustration. But you sound like a tough warrior, let's go kick BC's behind.

Love and blessings to you all.

MAC58

great news riri! Just got my time for the re excision to clear the margin tomorrow..be there at 11 am, surgery at 1 pm, I'm going to be "hangry " lol..

RiRi11

Thank You so much Maryann! My nerves creptback in now, waiting on my oncotype. This journey is just a rollercoaster of emotions!!

I will be thinking of you tomorrow and praying for clean margins! ((Hugs))

Engine104

We just got the pathology back. The size was larger than we thought, 3.0 cm, which means it could have spread to the lymph nodes, but they were not able to test any of them due to her prior lumpectomy 22 years ago. Classification is T2N0MX. He'll probably refer us to an oncologist and see what he says about chemo. Overall, the surgeon said this is "favorable" and is probably stage 1 or maybe 2, but most likely stage 1. He was able to get clean margins.

Janice is upset because she really doesn't want to have to do more chemo after all that she had with her AML 16 years ago and she hoped the surgeon had said it was the size they thought and nothing more is needed. I don't think that was possible because they were not able to test any lymph nodes, so I kind of assumed we'd be seeing an oncologist at some point, at least for a consultation. I told her the doctor emphasized it was favorable and probably stage 1. We need to keep that in mind, though I know it is hard for her. Between that and the fact we are about 48 hours out and the pressure bandage can come off and Janice will see the incision for the first time, today is going to be a hard day. That's a lot to take in all at one time. All I can do is be supportive.

Anyone else on here with a similar situation? What are we looking at as far as chemo goes, if the oncologist says she needs to do that?

Thanks,

-Larry

star2017

Larry, from what I understand chemo haschanged a lot in the past few years and doctors are much better at helping patients manage side effects. I wish your wife well

Engine104

Dear Star,

Thank you do much for writing.

I think you're right.

One thing about oncology is they keep making strides forward and prognoses have improved, so that is good.

My guess is because they could not find any nodes to test, they will err of the side of caution and do chemo. What type and how much, I don't know. Frankly, this is about where I figured we'd be given the fact they told us upfront that they doubted they'd be able to find any nodes to test.

I just keep concentrating on the fact the surgeon said the prognosis is favorable and probably stage 1.

RiRi11

Larry,

I was so happy yesterday with my pathology report and today I am a nervous wreck, waiting on the onco type and having the ‘chemo’ fear again.

I am hoping that once I know treatment, I will be ready to fight. Until then... I’ll deal with these emotions.

Continue to focus on the positive favorable prognosis and being your wifes rock!

Sending gentle hugs to Janice tonight

star2017

Larry, I’m stage three and had some very strong chemo meds. Despite that my side effects were mainly fatigue, and I was mostly able to keep up with my three small kids, thanks to the way the docs prepared me. Once you know the chemo your wife will get, please do share. I’m sure therewill be advice from recent patients.

All the best.

Engine104

Thanks Star and RiRi. I hate the fact that my wife and everyone on here is going through this. Thankfully, we have this wonderful website for information and support.

blessedinthismess

Thank you for sharing! Mine was originally diagnosed as DCIS as well. The lumpectomy revealed a 2 mm cancer in the center of the lump, but they could not get clear margins. He will remove and text the sentinel nodes as well. I feel like the longer they put it off, the worse it will get and allow more time for it to spread to the nodes, but they assure me that we are not in a huge time crunch. I am waiting for the surgeon and plastic surgeon to coordinate their schedules so they can get me in. All of the surgeons, as well as the PS assure me that my lymph nodes appear to be fine. I pray that is the case. I opted to have reconstruction with implants, which is something I never would have thought I would do. I never wanted a “boob job”, but then I never wanted cancer either. I wish you the best and hopefully I will learn to navigate the community better and follow your progress. Right now I suck at it and am trying to do it on my phone. Once I have surgery and can’t do anything else, I’m sure I’ll have plenty of time to figure it out and stay connected.

blessedinthismess

Jennifer - so happy for your post! Thanks for the nausea tip too. I have never had trouble with anesthesia until my lumpectomy. I had a hard time coming out of it and came out with nausea. I’ll make a note to ask for that. I am very encouraged by your post. I am dreading the recovery more than the surgery, especially the drain tubes. Iglad to hear that you are doing so well and I hope to have a similar experience. I was so overwhelmed when I saw the PS and was given so much information about my limitations. I am 48, but I have a 4 year old and I do things without thinking. I know the pain will probably remind me, but I can’t imagine not even being able to reach into the cupboard to grab a bowl or spice out of the spice cabinet. It will be difficult for me to allow myself to be cared for and needing someone to do the simplest things, but I know it is something I will have to get over for awhile. I hope that you will continue to do well and share your experiences. Best wishes!

Jennifer522

Blessed, I have a daughter who will be 6 next month. I have my husband or my mom (who is here to help me out), help her get dressed, bathe, or most other needs. The first week after surgery, I admit I didn't eat much because I got tired of asking someone to help me all the time. Plus I didn't have much of an appetite. That changed one day when I took my meds (antibiotics) on an empty stomach and felt nauseous. So I took a Zofran that made my dizzy and my heart beat fast. Zofran has done that to me before, so it reaffirmed I can't take that drug.

Week 2 I am much better at fixing meals for myself, as long as I don't have to bend down to lower cabinets or reach up past the first shelf of the upper cabinets.