My 36yo Wife is scheduled for a BMX in 2 weeks how can I help?

soscaredhubby

Hi everyone. Quick update. She made it through surgery fine. We are still at the hospital. They want to send her home today, but it's up to her. The tough news was that they found positive lymph nodes on her left side. They believe she will require radiation, which we were hoping to avoid. Thanks for all the advice and support. I will update again when we go home.

glennie19

hi hubby, thanks for the update. Sorry to hear of the positive nodes.  Thinking of you both.

Trvler

How many positive?

soscaredhubby

The Doctors said they tested the Sentinel node and came back positive, so they ended up taking all auxiliary nodes on that side. We won't know how many were positive until final pathology, but since they used the markers prior to surgery, it sounds like they expect there to be many positive. They were also unable to spare the nipple on that side, as was previously the plan. Hoping we can finish this off with chemo and radiation. The right side came back negative.I hope this makes sense. I haven't slept much since I'm staying at the hospital with my wife.

clarrn

hi hubby

Glad you are through surgery. I just wanted to reassure you both that for me personally radiation was the easiest part of my process by a long shot. We all respond to treatment differently but I just wanted you to have some hope.

Also there are some real superstars on here! I thought I was prepared for surgery and it was a lot tougher than I expected but we GOT THROUGH IT! I felt a bit like a failure because I couldn't get back to things as quickly as most people on here. I was surprised and depressed because I was such a healthy, fit person. So just on the off chance that she does struggle with recovery, the most important thing is to take the time she needs. And that she is not somehow failing if she needs to refill pain meds or whatever. I would have been further ahead of I had not tried to do too much too soon! Best of luck!

glennie19

Hang in there.  Rest is the prescription when you get home,, for both of you!  Hoping you have family/friends/neighbors who can walk the dog, bring food, etc.    Rest, rest, rest....

queenmomcat

Thank you for the update. I'm sorry to hear about the axillary nodes, and the nipple--I didn't have to deal with the former, just the latter, for my second surgery.

soscaredhubby

Thank you for the support. They wanted to send her home yesterday, but she was in too much pain and asked to stay another night. We are leaving today. She had breakfast and we took a walk around the halls, now she is resting. We saw the plastic surgeon this morning. They haven't come out and said anything because we are still waiting on pathology, but it scares me to see the obvious concern on his face. Of course his job is just to make her chest look normal again, and that is the least of my concerns. I just need to know we can beat this thing. We can come back from multiple positive nodes right? I am staying positive for my wife, but I was a complete wreck in the waiting area before we got to see her the day of surgery.

I will make sure she gets lost of rest and recovers as well as she can. I took a picture of her and posted it on FB and everyone was amazed how great she looked. Of course it helped the Percocet had kicked in prior to that moment. We have had many people offer to bring meals over. So many in fact, I'm starting to feel insulted. Haha. It is well known that she is the cook in the relationship. I will do my best.

Thanks to all you Superstars!

Trvler

No, plenty of people survive having it in their nodes.

I am surprised they wanted to send her home so fast. Did she have reconstruction?

Get some rest, ok?

glennie19

You are doing a great job, Hubby.  Hang in there. Both of you get plenty of rest, but also good to get up and walk around the house as she feels able. Slowly build up strength.   it is great that people are bringing food!

And just a word of caution about lymphedema prevention:  Have your wife limit her arm movement to shoulder height only for the first 10-14 days post op. 

If you've been treated for breast cancer, you are at risk for lymphedema of the hand, arm, back, and chest or breast on the affected side. If your surgery was bilateral, then both sides are at risk. The risk remains for the rest of your life. The good news is that you can reduce that risk by understanding a few important principles and the safe practices that follow from them. 

After surgery, limit stretch on the axillary area for 10-14 days post-operatively , as lymphatics have limited time to regenerate: NLN Conference Lecture, 2010, Jodi Winicour PT

From Foldi Textbook of Lymphology: Lymphatic regeneration occurs as the stumps of the afferent or efferent collectors of a removed node connect as the result of proliferation of the endothelium at the terminal portion of the damaged vessel. Regeneration of superficial vessels in dogs takes 4 days, and deep vessels in 8 days.

Llimit your arm movement to shoulder height for the first 10-14 days post-op to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration. 

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Warrior_Woman

SoScaredHubby - I haven't read through all the responses but I want to reply just the same. The fact that you are here posting this speak volumes. These times of our lives are critical moments. How each of us responds will leave a lasting impression forever and make or break a marriage. That goes for your wife as well as for you. Many husbands leave and many wives push them away. Simply being present makes all the difference. She will worry if you still find her attractive. In your eyes she is the most beautiful woman you've ever seen. Every step of the way it was clear to me that my husband wanted me alive and healthy - #1 and #2 to regain my happy personality. I will love him forever and always remember how he has been my backbone. Finally, this will be a horrible strain on you. Ask your friends and family for things you need to be helpful. It's not a one person job. Be well.

soscaredhubby

Trvler: Thank you for that. The doctors seemed concerned post surgery. I think they expect that we will be bumped up a grade. She did have reconstruction. They really wanted her out after one night, but I told her if she isn't ready, stay one more night. She was better today.

Glennie19: Thank you. I did her drains today and had no problem. It's just like how I lost it in in the waiting room, but when I saw my wife again I was locked in. She needs me to beat this. I get that. We also appreciate the lymphedema information. My wife specifically asked about this prior to surgery. The surgeon said she was at a higher risk post surgery because they took so many nodes out. Any prevention methods are welcome.

Warrior woman: Thank you. I have no doubts about our bond. We will be tested, but there is nothing can break that. I told my wife if she wanted to skip the reconstruction to avoid more pain, that was fine with me. I just wanted to make sure she wasn't doing it for me. She is doing it for her. All I care about is keeping the love of my life in my life and keeping her smiling. When the surgeon was giving us (family) the bad news and I was sobbing, I told the surgeon that my wife is so awesome, and it kills me that this has happened to her. The surgeon stopped, looked at us and said, "You know, I've talked to her a lot, and she is really is awesome." And I could see the tears in her eyes.

soscaredhubby

BTW: I will just say that if you are interested in hearing the story from my wife's perspective, she has a blog on wordpress called "El Tigre Fights Breast Cancer." She hasn't updated it since the surgery, but she has really enjoyed writing it so far.

https://eltigrefightsbreastcancer.wordpress.com/

queenmomcat

Blog followed.

glennie19

(((hubby & El Tigre)))    I will check out her blog. I have no doubt that your wife is awesome, as you are an awesome hubby.

  The main prevention tip for right now, is to not lift her arm past shoulder height for 10-14 days post surgery.  That seems to be important.  (Wish someone had told me that!)  We have an excellent lymphedema forum on here and some of them are the ladies who started that STepUpSpeakOut website that I linked you to. 

And it's OK to "lose it".  This is a lot to deal with.   One day at a time. We are here for moral support and hopefully help with questions. 

soscaredhubby

Glennie: Thanks for that information. When I told my wife what you had said, she was frustrated because the hospital had her raise her arms a few times. She is keeping them down now. We will also check out that thread and the link. Thanks for following her blog. She writes about almost every every detail on there. She has been writing again today, but she's also on a lot of pain meds, so it will probably extra interesting. Thank you for all the moral support. You are awesome too!

Oh, and does anyone one know how often we are supposed to empty the drains? I was so tired when we left the hospital I forgot that part. They trained me how to do it there, and I haven't had any problems. We just haven't heard back from then on how often we should measure. With all the visitors and naps, it's hard to find time to do it on a regular basis. I feel so bad for anyone who has had to do this on their own, just getting through the shower process was tedious.

glennie19

hubby,, I had to do mine twice a day,, be sure and write down how much you pour out from each drain.

Warrior_Woman

I also had to empty drains twice a day. You can do it more often if the output requires it. They should have given you written instructions but call with whatever questions you have. It's always good to double check.

soscaredhubby

Thanks Glennie and Warrior Woman! I have been writing down the measurements on a chart they gave me. I think the hardest part is the stripping of the lines. A couple nurses in the hospital weren't careful, and now my wife is very nervous about it. I am very careful, but I haven't been able to clear them out as much as I would like. Anyone have any tips on that? The last part of the line where it goes into the "grenade" seems to get stuck a lot. She's doing pretty well. She just gets tired easily. She likes writing on her blog, but says the pain meds make it hard to focus. We have an appointment with the plastic surgeon on Thursday, so we hope he likes how everything is healing. She did have one spot he said should be fine, but they will have to keep an eye on. Of course, we are concerned about the expansion on the left side since they have to make a new plan to plan for radiation. We are both looking forward to the chemo, just because we want the rest of whatever is in there out! I guess that goes without being said.

glennie19

drains are a pain.  Did they show you to put a finger on either side of the place where it comes out of the body,, to steady it,, and then strip, using an alcohol wipe with the other hand?  It's not easy to get it all out,, at least that's what I found. It can get kinda clotted up in there.

I bet she is tired.  Rest, rest, rest,,,,,,

Are pain meds making her constipated?  Watch out for that. Nip that in the bud quick.  Warm prune juice half and half with apple juice.  Or just prune juice. 

3-16-2011

drains are a pain. At the follow up appoinyment nurse or suregon my strip. them. My suregon was an expert and was willing to teach me and my husband. Your confidence with. them will put your wife at ease. I continue yo admire your care and concern.

littleblueflowers

Strip them about every 12 hrs. Use lotion or alchohol on your fingers so they slide on the tubing. If they clot closed, call your surgeons office and get new valves. It's no big deal. You are so awesome, btw. I wish my husband was as involved as you! Your wife is very lucky. It's completely possible to beat node positive cancer. That's what chemo and radiation are for! It's brutal, but effective. You both stay strong and you can do this!

Stenokim

hubby, have your wife take stool softeners or the prune juice for sure. The pain meds are terrible at causing constipation. That was almost worse than the surgery for me. And don't freak yet on the node. I had one positive node, had 12 removed, and I didn't do chemo or rads. Get the oncotype test if you can. I am a very active person, and despite the docs telling me I couldn't carry a purse on the arm I had the nodes removed, I found articles regarding weight lifting reducing incidence of lymphodema. So I started with light weights three weeks after surgery and have continued to increase to a pretty heavy weight lifting routine now. Fingers crossed, no lymphodema yet. You're an awesome husband, just like mine, and your relationship will be even stronger. Prayers and best wishes to your wife and yourself!! Kim.

soscaredhubby

Glennie19, 3-16-2011, littleblueflowers, Stenokim:

Thanks for all the support and advice. We both really appreciate it. I have been relaying all of your good advice to my wife. She is taking a laxative. She was able to go yesterday, but the pain meds have definitely have been causing issues there. I will increase the amount she is taking to see if that helps, and run to the store for some prune juice.

We are both pretty tired. I have alarms set throughout the night for all the medication she is taking. So we are only sleeping for a couple hours at a time. I am hoping to align them better so we can get more rest when the pain decreases a little. My wife decided she is most comfortable sleeping in the recliner of our sectional, so I am also sleeping across from her on the the sectional. It makes it easier to get her meds, and I can't sleep in the bed without her anyway.

We are nervous about the nodes because the doctors seemed to think that there were enough to bump her up a stage. We are still waiting on the final results, but it's very scary. Do they do the Oncotype test past stage 2? My wife did lift weights a little before all of this started. She also has a physical therapy appointment in the next couple weeks. I am sure she will want to get back to her exercise routine as soon as she can, and her energy level allows.

The hospital didn't mention using alcohol on the tubing. That sounds like a good idea. They just told me to wear gloves, which seems to make it twice as difficult. We will try that. We are so hoping they take some of these drains out tomorrow. Does anyone know what the numbers have to be for them to take them out? Thanks.

glennie19

They want the numbers to be low,,, forget how low,, but every surgeon probably has his/her magic number. Wear gloves,, but get an alcohol wipe, wrap that around the tubing,, and then strip using the wipe.  Yeah, just with gloves, I can see them kinda sticking to the tubing. Try just 4 oz of the prune juice at first, and see how that works.  One time I was really desperate and drank too much,,, giving me the other issue,,,,

Recliners are great for post op sleep.  Appt is tomorrow?  Hoping you get some answers then.

Don't worry/think about the exercising right now.  This is recovery time. After 2 weeks, she can lift her arm above her shoulder again, and start walking her fingers up the wall to stretch.  Also, at the doctor's, get an RX for a qualified LE therapist so that she has an initial consult and arm measurements. That way, if anything ever does flare up, she has the initial measurements.  She just needs the initial appt for now,, for measurements and to establish herself as a patient if she ever needs to go. Doesn't have to be done right now,,, but maybe within the month.

SpecialK

You generally have to be below 30ml/cc in 24 hours for the drains to be removed. Also, generally, more activity equals more drain output. Be careful about too much laxative/prune juice - the opposite situation can be as uncomfortable because it will involve getting up and down more frequently. My brother-in-law is a gastroenterologist and recommends Miralax after surgery. Oncotype testing is not usually done if more than three nodes are positive, so it looks like you may need the node pathology report prior to knowing if it is of value. I also don't know if your insurance will pay for Oncotype Dx if she has multiple positive nodes - since this is normally a ticket to chemo, there is less point in doing a test to see if chemo will be of benefit. Just something to keep in consideration.

BarredOwl

Hi hubby:

Re alcohol and stripping the tubes, you can buy a box of individually pre-packaged antiseptic "alcohol swabs" at your local drugstore. Use a swab in the sliding hand only. It makes it easier to slide down the tubing, because the tube is sort of tacky and the gloves are too as you note.

BarredOwl

3-16-2011

just a quick note. Wishing you both well. I have loved my physical therapist. Just be sure to ask that they have special yraining and experience with lymphadema.

soscaredhubby

Hi everyone!

Thanks for the advice. I gave my wife a small glass of prune juice and it didn't take long for it to kick in. She was like, "Welp, don't have to worry about that anymore."

They removed 2 of the drains yesterday. We are down to 3. From the measurements it seems like only one of them is over the 30 mark. Or even close to it. Which would be drain #3. My nemesis.

We double checked with the physical therapist and they said they have experience with lymphedema. I will ask more questions when we go in next week to see them. Thanks.

They have the pathology, but we haven't received a call from the surgeon yet. Just the primary doctor who didn't know what all the info meant. All we know at this point is there are enough positive nodes to be concerned, and the margins were not what they hoped. I'm still sick thinking about how long it took to get her surgery. It may have cost her a stage. We don't know what to do on the fertility aspect, but need to decide soon. I just need to know we can beat this damn thing. I am so scared of losing her.

Trvler

Do you know what grade? If she isn't a grade 2 or 3, it might not have mattered. I know how you feel. It took me a long time to get started on chemo because my idiot MO was giving me pushback about going out of state for surgery and it was almost like she tried to make it harder for me. Long story I won't bore you with. But I am not sure it made a difference.