April 2018 Surgery Support Group

Prairiedog

Larry, I have been reading your posts with interest. Our situations are very similar as I had BC 19 years ago and now have been diagnosed with the same type of BC in the other breast. It certainly blindsided me. I am the researcher in my family but my husband is a retired university professor also. I think he has a harder time with my diagnosis than I do. I get to be proactive and fight this disease while he has to stand by and watch and help. I feel empathy for all of these good men who walk this journey with us.

It has been fascinating to see the changes in diagnosing and treating BC. I also had all of my lymph nodes removed. Little things like only having one arm available for blood draws, IVs, etc. is annoying. My right arm and hand are beginning to look like a pin cushion. The sentinel node biopsy is a vast improvement. I'm waiting on the results of genetic testing before we do surgery. That is a field that is advancing extremely rapidly. Two decades ago that certainly wasn't an option. All of the new chemo drugs are very interesting

My best wishes to you and your wife as you progress along your treatments.

LaughingGull

Hi April surgeries ladies (and gentlemen)

Heading to unilateral mastectomy with tissue expander on Thursday April 2th after completing 5 months of chemo (2 months AC, then THP); learned about the date only a few dates ago and I am freaking out but trying to stay calm. Just checking in and wishing everyone well -starting to read the links for newbies and also these pages.

Someone please remind me that I can do this!

Best

LaughingGull

Engine104

Hi Prairiedog,

Thanks so much for your response.

Was your new BC hormone receptive? The doctors feel that is why my wife had a recurrence so long after the fact, as hers is estrogen receptive, but fortunately HER2 negative.

I work in academia too, so researching the heck out of something is how I cope.

One of the biggest strides, I think has been in the area of immunotherapy. I haven't heard it being used for BC, but they have been doing amazing things with it in the treatment of other cancers. City of Hope, where my wife had her treatment for AML 16 years ago, has really taken the lead on this.

We got a call this morning from Oncology at Kaiser. We have an appointment on Monday afternoon.

Blessings,

-Larry

ScubaMom24

Larry - you and Janice are much in my thoughts and we are all appreciative of your research and in awe of your support. My partner is an academic/MD so he has been very supportive, he also copes by researching/translating and finding the right oncologist as I am sure I will be headed on that path after surgery. I have assigned him hospital duty as I'll be in 5-6 days for a stacked DIEP flap and his lab is right across the street.

Laughing Gull - You can do this, like the rest of us -- we're in it together. We're all dealing with anxiety as surgery approaches, or dealing with the aftermath. You'll find this group very helpful so please keep us informed how you are doing.

To the rest of you in recovery or waiting for your surgery, sending healing thoughts and prayers.

3monkeys

I was diagnosed at the end of March with ILC after a routine mammogram that was followed by another mammogram, ultrasound and then biopsy.  I had a lumpectomy and sentinel node biopsy on April 9. At the time of the surgery, we were told that the nodes appeared clear.

At the follow up appointment with my surgeon this past Tuesday, April 17, I was told that the margins were not clean.  Also, one of the nodes showed a micrometastases.  To say the my husband and I were disappointed was an understatement.  Before going for this appointment, we both just had it in our heads that everything would be clear and I could move on to treatment.  

I know that having a second surgery is not unusual, but it still didn't give me much comfort.  Also, the lymph node diagnosis is very worrisome to me.

Has anyone had lymph node involvement like this?  My surgeon said it can be treated by radiation.  

The surgeon went over the pathology report, but our heads were spinning so not a lot of the information made sense to me.  I have since made notes and have a lot of questions I will be asking him.

I go in for my second surgery on Tuesday, April 24.

Engine104

Dear Scubamom: Thanks so much. It is hard for me, as I am sure it is also hard for your partner, to feel like we can do nothing. Researching makes me feel like I am doing something. It also helps, sometimes, to allay my fears.

Dear 3Monkeys: I'm so sorry that you'll need more surgery. This is our third time at the circus (BC x 2 an AML). Each time, it's been a roller coaster. We got past it each time. I have to believe, it will be the same this time. I don't know how our oncology appointment will go on Monday. I'm hoping for the best, but I am certain we're looking at chemo and who knows what else. I wish you all the best.

kdrake1007

Hi everyone,

I'm joining the party a little late here, but I had a lumpectomy & SNB on 4/16. Got the pathology back last Friday and have spent the last 36 hours or so having a good cry. Now I'm ready to move on and do what has to be done.

3/4 nodes were positive on the SNB (2 with macro mets & 1 with micro mets) and the margins were really close (less than .5 mm) on one side.

So my surgeon wants to do an axillary node dissection and port placement on Thursday. I have an appointment with my oncologist tomorrow and the surgeon on Wednesday and will discuss with them. But I've read a couple of suggested articles here that say the ALND may not be necessary and is diagnostic only at this point. Will the results really affect the treatment plan? I'm very worried about the increased risk of lymphedema and loss of range of motion. My arm on the affected side has felt a little heavy and tingly since last night.

So does anyone know if the additional surgery is worth the increased risk. I'm obviously new to this world but researching and learning and "knowing" helps alleviate some of the anxiety I'm feeling right now.

Thanks

Engine104

Dear Kdrake,

My wife had an ALND when she had a lumpectomy 22 years ago. That's just the way they did it back then. She's had no loss of movement or lymph edema. On the down side, she knows she can't lift anything heavy with that arm, not because of loss of movement, but that it could cause edema. Also, they cannot draw blood or take your blood pressure with that arm.

I don't want to give you wrong advice, but I'd say ask the oncologist tomorrow what he thinks. He may say with 3 of 4 nodes being positive they have what they need to know and the treatment plan may not be much different if they did an ALND. Just my guess.

I think they can also see other nodes through a PET scan. Maybe research PET scans and lymph nodes in BC. There is an article on here about that: http://www.breastcancer.org/symptoms/testing/types/pet .

My wife also has her first oncology appointment tomorrow. They were not able to find any nodes to test last week before or during her mastectomy. I'm fairly certain, given that and that the tumor was larger than the ultrasound showed, we are looking at chemo I think they may also order a PET scan.

I know it is easy for me to say because I am not going through this as you, my wife and everyone on here are, but please hang in there and take one step and one day at a time.

Best,

-Larry

star2017

An update for me since surgery(4/18): I had the exchange done on my right side. I got the round gummy bear implant Sientra 440, and while the tissue expander looked like it was about the size of the left breast (that I still had at the time), this just doesn't look right. It's too small or too high or too flat or too something. Maybe it's the lack of a nipple. it's funny because the whole time I was telling my PS to make sure he didn't go too big.

I guess part of the problem is my postpartum body. I was diagnosed while pregnant and am only 5 months postpartium and just not happy with my body shape. I suppose that's one reason things don't look quite right, the proportions are off. I have a follow up with the PS tomorrow and will definitely ask him, but would love some advice for those who may have experienced something similar.

The left prophylactic mastectomy side is doing okay. If you recall, they weren't able to do immediate reconstruction due to poor blood flow, so there's a tissue expander there instead. The area looks less bruised, so i assume that's a good sign. I'm waiting to hear back from the radiation oncologist to determine if I have to wait until after radiation (May-July) before starting fills and doing the exchange.

When I left the hospital I was prescribed Vicodin, Valium, an antibiotic, and colace. Yesterday I tried Tylenol rather than Vicodin, and today I dropped the valium and added ibuprofen between Tylenol doses, to see if I can manage that way. It's been okay.

I am feeling pretty overwhelmed and frustrated. I can't hold my baby, can't drive, I have tons of help and it's driving me crazy. I am lucky to have so much support and it's not them, it's the situation. I hate being dependent and out of control. I was finally starting to feel better, but the prophylactic mastectomy has thrown me back into those vulnerable days, and I've had a couple big cries today. I just want my husband to be home and I want my space. I've retreated upstairs with the laptop and left the grandparents to deal with the kids for much of the day. I either want to be in charge or left alone. Not sure how to address these feelings.

In better news, there's definitely hair growth (last chemo was 3/21). It's patchy and very fine, but it's there.

Tanmcl

Hi all. This is my first post, though I've read through several while on my breast cancer journey. I did 6 rounds of fec-d prior to surgery. The MRI showed complete response so naturally I was overjoyed. However, just got the pathology grom my surgery. They found remaining cancer cells and my margins were positive. Nodes looked clear though. I'm in a state of worry now. The surgeon said she was very aggressive in surgery and removed as much tissue as she could. She' not confident going back in is an option. Will radiation potentially zap this? Is there still hope I can rid myself of this? I'v been so positive but today I just have this doomed feeling.

PaulaAtlantaGA

My bilateral mastectomy is this Friday, 4/27. My plastic surgeon, who's in charge of me in the hospital and until drains come out, has said he does not think I will need narcotics. Any. I'm not a person who abuses drugs, and this scares me. OK, the whole thing scares me just a bit.

Also, I'm going to do tissue expanders for much smaller breasts (DDD to C). I have radiation afterwards, and another concern is that he wants the tissue expanders to stay in for 3 - 6 months post radiation since radiated skin apparently changes. I want them exchanged ASAP. He will do the first fill while I'm under and two more before radiation, then stop for radiation. I see him in the morning for a last pre-surgery conversation if anyone has ideas about pain and length of time for TE.

LAMinders

Hi all,

Hope those in post op are recovering well. I finally got my last 2 drains out today and I am ecstatic! I hated those stupid things. I had my first TE fill last week (when the first 2 drains were removed) and didn't feel much during the fill. I've heard that many people tolerate 100 ccs at a time per side, but as soon as I felt pressure, my surgeon stopped (at 50 ccs). Since I don't have to work this in before radiation, she said there isn't any rush. I was kind of annoyed since I didn't feel anything and wanted to get the "max" fill, but I am so glad I didn't! That night and every morning since... OUCH!!!!!!! The minute I wake up in the morning I am in excruciating pain. I typically have a high pain tolerance and was off all pain meds, including Tylenol, for over a week before the fill. But since the fill, I have woken up in so much pain that I am in tears. I don't think the pain wakes me, but as soon as I try and move to sit up, it is overwhelming. Within 15 minutes of taking Tylenol and Ativan (very low dose to relax the muscles), I can function with only discomfort the rest of the day. I am starting to have more mobility and while I still have lifting restrictions, I've been increasing my range of motion so I've been more independent and have even been able to do some light housework with a little discomfort, but no pain.

I asked the nurse who removed my drains today and she suggested Advil and to start massaging the skin with lotion. I asked for a refill of the Ativan because I think it is the only thing that has been helping since the fill, but she isn't sure the doctor will approve it.

For those who have had a BMX with immediate TE placement, how long after the surgery did you start sleeping like you did prior to surgery (i.e. no wedge behind your back, on your side) and how long did you feel pain after each fill? Does anyone else have pain first thing in the morning like I do?

My oncologist prescribed Tamoxifen, and wants me to start in about a week or 2, after the drains were removed and once I start to feel better post op. So, I have decided my start date is May 1. In addition to the icky side effects that many women complain about, my doctor warned that it will likely make me dizzy for the first few days, so I want my upper body to be strong enough if I need to catch myself.

Laughinggull- YOU CAN DO THIS!!!!

Larry- how did it go? The Oncology department is amazing, The front end staff are so kind. Not sure who your wife's doctor is, but I had Chou. He is AMAZING.

Congrats to those of you with clean margins!

I've read that a few of you have to go back to get better margins. I am so sorry to hear you have to go through surgery again- sending healing thoughts for another speedy recovery.

For those with unfavorable path results that may lead you to more treatment that you originally expected, I am so sorry. I have been in your shoes and it can be scary and overwhelming. A dear friend of mine shared what a therapist told her while her husband was undergoing treatments for terminal cancer... Think of an ocean wave. It is incredibly overwhelming as it crashes over you, but it doesn't stay there... it retreats back to sea and allows you some calm and beautiful views of the shore. Pretty soon, we will all be splashing happily in those waves and building sandcastles on the beach.

Star- I am glad you have family there to help you. Accepting help is something I struggle with every day. Sometimes I think that is harder to deal with than the pain itself. It is so hard to be dependent, especially when you are used to being the caretaker wife and mom. I wish I could take my own advice, but just remember that this is temporary. You'll be running after your kids with your long flowing hair in no time!

Virtual hugs to everyone.

star2017

LAminders and others going through expansion, I had leftover oil for pregnant bellies that I applied to the side being expanded after the wound healed. I felt no pain at all, but I also waited several months before ezpanding

smc123

PaulaAtlantaGA, I had my double mastectomy in August...then had my expanders filled weekly for about 5 weeks. My PS told me you can always go smaller but you can't go bigger after radiation...he slightly over filled for my taste...so I went smaller during exchange. Then I had about 6 weeks of radiation. My skin had to heal for at least three months and between scheduling conflicts I finally had my exchange surgery in April. Which was about 4 1/2 months after my radiation ended. Good Luck!

foreverfaith

HI All:

Joining the April surgery group! I'm scheduled for left lumpectomy on 4/25. Happens to be my 3 year wedding anniversary. From the sounds of it Iooks like celebrating on Saturday is feasible

I'm getting really nervous. Not so much about the surgery. I just hope I'm taking the right direction. I have IDC, Grade 3 and triple negative. So, I am feeling like I just want this thing out of my body! I'm 39 so I have had blood drawn for BRCA testing and will have a PET scan too. I suppose I feel that I will deal with whatever those results may be, when they arrive.

We are makign some tough decisions ladies. I feel for every single one of us and those close to us. Wishing everyone lots of healing and peace.

Engine104

We met with the oncologist today. The tumor was not aggressive and with chemo (Docetaxel and Cytoxan) there should be only about an 8% chance of returning. That is good news. The chemo will be hard, but the doctor said nothing like what she had before with the AML. It will be six sessions, one every three weeks.

LAMINDERS: Thanks. They are amazing, as everyone at Kaiser has been so far. Just great. Janice's Dr is David Beard. He spent a lot of time talking to us and answering questions. Basically, if they had been able to find a lymph node to test and if it was clear, she'd only need hormone therapy. Unfortunately, they could not find any nodes due to the prior lumpectomy and lymph node diisection 22 years ago, so they cannot be sure if hasn't spread, but they don't think so based on the type,etc.

Thanks again everyone for your thoughts and prayers. It is very much appreciated. Please keep them going!

-Larry

binkysmom

Well, this is finally becoming real.  Going to nuclear medicine department later today for my dye injection. Surgery at 9:30 tomorrow.  I'm nervous, yes, but I think I'm as prepared as I can be and the rest is out of my hands. I feel like my life is about to change forever, and I guess it is.  There is a small group of us scheduled for tomorrow, I wish you all the best for a successful surgery, recovery, and final report. 

For those who have had surgery, hope your recovery is going well. Thanks to those who have given us some insight with the hospital process, before and after surgery. 

For those awaiting, good luck to you all.

It's odd that a little over a month ago I had no clue this site even existed and now we're all connected in this strange kinship that none of us really wants!

I'll close with a quote from a magnet I came across while cleaning out my bra drawer:

"You're braver than you believe, stronger than you seem, and smarter than you think." - Christopher Robin 

SLL101984

Hi everyone. I was just lurking and read through all the posts from you all from the past 3 weeks. I am still in the early stages of figuring out my diagnosis and then treatment plan (leaning towards DMX for peace of mind, I’m only 33 and will have many years of worry hopefully that way it’s won’t be as severe). Just wanted to send positve thoughts for continued healing and recovery! Not that I want to be in your shoes (who does?) but I’ve had my cries and I am ready get these next steps over with.

LisaK12

Hi all,

Finally got my last two drains out yesterday, 13 days after surgery and 11 days after getting out of the hospital. Without the drains I'm so much more comfortable, and was finally able to sleep on my side last night! Took my last dose of antibiotic this morning. Dr. wants me to wait until tomorrow for a shower though. That will feel good.

I really feel for everyone who had TEs put in and is in pain -- I don't think I could have gone that route. The drains were hard enough. I am adjusting to the implants, the swelling is going down, and the incisions are slowly healing. DH says I'm looking "perky." I started trying on some of my "normal" tops yesterday and today, and they seem to fit just fine, which is a relief because I am not one of those people who enjoys shopping for clothes.

Gentle hugs and continued best wishes for all of you on this journey.

SLL101984

LisaK12 were you able to do the mastectomy and implants all in one procedure? Like I mentioned above I am very new on this journey and I've taken some comfort in seeing everyone that has gone ahead of me, I can do it too! Glad to see your are on the mend and feeling better too

LisaK12

SLL -- Yes, it was a five hour surgery for the double mastectomy and direct-to-implant skin-sparing (but not nipple-sparing) reconstruction using silicone implants. I was fortunate to have sufficient blood flow to the skin to allow them to go direct to implants so I didn't need TEs. I wish more women were able to get this option because it is not a bad recovery at all, especially with the implants on top of the muscle! (I was not a good candidate for flap surgery due to a blood clotting disorder, and doubt I would have opted for that anyway because it is a longer and more complicated surgery with a higher risk of complications.) I woke up from the surgery with breast mounds about the same size as what I had before, and with full range of motion in my arms. I was up and walking around in the hospital the day after the surgery. I was released from the hospital after two nights, and took valium my first night home only and since then just Tylenol and antibiotics. I would not say it has been a piece of cake, but today is two weeks since the surgery and 12 days since I was released from the hospital, and my life is mostly back to normal. I am able to go for short walks outdoors and go out to eat. My doctor told me not to lift anything over 5 lbs for now, and she wants me to wear a sports bra 24/7 and doesn't want me exercising other than short walks, but other than that things are pretty normal. I am still taking a nap every afternoon, but I think that's just because I'm still healing.

Feel free to ask me any questions and good luck with whatever you decide.

PaulaAtlantaGA

Hi, all,

My DMX with axillary node dissection is Friday, and I saw my plastic surgeon again today. I am more at peace than ever because of a decision I made. I'm 64, married 39 years to the best guy, have triple negative BC, and struggled hard through the five months of chemo (including hospital stay for neutropenic fever, three blood transfusions, IV saline). SO . . . I have one of the best plastic surgeons in Georgia, and I told him that if it is not possible to do subcutaneous (on top of pectoral muscle) tissue expanders, then I want to go flat. IF I have TEs, I'm going from a DDD to a B and looking forward to being smaller. I am having radiation after surgery, and, honestly, I just don't want my pectoral muscles cut. It's been a long road.

Binkysmom - what a lovely posting. I, too, have cleaned out my bra drawer, realizing, and, yes, grieving a bit, that my days of being well endowed come to a close on Friday. I hope you'll let us know how surgery went when you can.

star2017

I met with both my breast surgeon and my plastic surgeon today for post-op visits. They were very pleased with the way the left (prophylactic mastectomy) side was healing, especially since there had been concerns about blood flow. I'm supposed to apply Aquaphor regularly to encourage healing. I did talk to my PS about the right (implant, no nipple) not looking quite right, but he also reminded me that there was no reason we couldn't make adjustments in the future. But it's best for me to get past radiation and past the post-partum phase. I think I'll take the next few months to eat healthy and be a bit more active. I think if I lose 10lbs, I'll look much more like myself and more proportionate. Larger boobs always make me look chubby and matronly, and I want to avoid that! When it's time to reconstruct the left, we can think about if the right needs revision. I still have my drain, so I'll need to go back next week, but I'm generally feeling better.

I'm surprised some of you are told not to shower. My doctors have said it's fine to let water pour over the incision sites and just to make sure everything is patted dry.

binkysmom: I've been gifted two magnets with that quotation, but didn't realize the source. Thanks for sharing!

Engine104

My wife's surgeon told her showers are ok, so long as the incision is patted dry. I try to launder or change the towels every two days at the most, to limit any bacteria.

They also showed her a neat trick with string to tie around her neck to hold up her drain.

kdrake1007

Hi Larry,

Thank you for the reply!

I met this week with the MO and BS and I'm at peace (not happy, mind you!) about the ALND. Their reasoning makes sense, and my BS explained that based on several factors there is a 90% chance that other lymph nodes are positive and the surest way to remove the disease is to remove those lymph nodes. So I'm back in tomorrow for more surgery and now have the start date and cocktail for my chemo.

But the best news for me was the result of the CT scan from this morning - CLEAR no sign of mets! I think the fear of that has been the biggest anxiety producer! I know this summer and fall are not going to be enjoyable in the slightest. But by Christmas I will be done with the worst of the treatment and hopefully regrowing hair in time for my daughter's wedding next June!

Thank you, Larry, and everyone!

Engine104

Dear kdrake1007,

I'm sorry you have to have more surgery and have an ALND. I think I mentioned that my wife had that with her lumpectomy 22 years ago. She really hasn't had many issues. There is numbness under her arm and she can't get her BP taken from that arm, nor lift anything heavy. It sounds like it's the right choice for you.

I'm glad to hear the CT was negative. That's got to be a big relief. Can you tell me was it a CT or a PET scan?

More fun tonight.. My wife's drain is coming loose.We have an appointment tomorrow afternoon with the surgeon to look at it, but I felt I should call the on-call nurse to see if it would be ok for the night. She thinks it will be ok.

binkysmom

Hi All,

I had my lumpectomy with a reduction and lift yesterday.  Stayed in hospital overnight which I was grateful for. They took me at 9:30 and I remember nothing until around 6:00. Came home late morning today and am tired and sore, but not really in pain.  I can shower tomorrow - Yay! All seems to have gone well, just hope the report is good. The only glitch is that a couldn't pee last night before midnight, so they ended up catheterizing me.  By this morning everything was ok.

PaulaAtlanta - I also was a DDD and although I haven't gotten a great look at them, I think I'm now a small C or a B. That is fine with me! It really does feel like I have a weight off my chest! I'm looking forward to getting bras at normal stores instead of specialty shops. Sounds like you've been through a lot so far, I hope your surgery goes smoothly.

timetobebrave70

I had bilateral mastectomy with expanders on the 24th. It was an out patient surgery for me. I went to see my plastic surgeon the day after and he says All looks good and that I could take a shower but only the water hitting my back. Don’t get me wrong. I felt great after the surgery and I am doing well eightnow but I think it’s so crazy how my doctors arr so laid back about everything....

SLL101984

when you were diagnosed did any of you immediately decide to go with Dmx? Didn’t even consider anything else?

Tanmcl

Hi Everyone. I have been trying to find someone who is in the same boat as me but my situation doesn't look very common. I was diagnosed with IDC back in October in my right breast. I had chemo prior to surgery and underwent double mastectomy on April 3. The MRI prior to surgery showed a complete response meaning no disease was seen. We were so happy. However, once the surgery was done they said there were still cancer cells there (both IDC and DCIS). Nodes were clear! My margins were focilly positive though. My surgeon said she wants to go back in and try getting more tissue (though she doesn't think there is much tissue left as I was already super small chested). So...May 9 I'll have the expander removed as well as whatever tissue she can find. Anyone else have positive margins after mastectomy? It does worry me. I know its common after lumpectomy. Radiation is still the plan after I'm healed but I Would be loved clean margins.