December 2018 Surgery Support Group

Misha13

Mariett-I hope your first chemo went well!

I have been researching the heck out of lymph nodes, stages, prognosis, clinical trials, chemo, hormone treatments etc...and I feel the positivity coming back! I know I will have radiation, and studies are showing rads to be very effective for positive nodes. I am even thinking of ASKING for more chemo! I guess it’s a sign that chemo wasn’t too torturous if I’m willing to do it again so soon!

If anyone reading this has done chemo both before AND after surgery, or you know if this is something they do, pls share your experience or knowledge! I will have to wait until Friday to find out what docs say.

I know I have options and I CAN keep fighting!!

Wigging2000

that’s our Misha!!! Yes girl you will fight this and I’m sure you’re going to get a great plan on Friday!

SDWoman

Misha I so admire your strength and courage? Wigging was right you truly are a warrior!

HPFULL

Yay Misha🙌 You are so strong. I have faith that the treatment plan you receive Friday will beat this. You will kick cancers ass!

Got a call from onc today, they had originally cancelled my appointment as they didn’t have oncoscore. I guess some of my tumor showed signs of being Her2 positive so additional testing was done. It ended up being negative🙏 My Oncotype test came in at the last minute so they called me in...oncoscore showed that chemo had less than 1% chance of helping with reoccurrence, so no Chemo, just rads and Tamoxifen.

SDWoman

HPFULL Glad you got such great news.

I am reading up on lymphedema. Were any of you told to avoid blood draws and blood pressure readings on the side where lymph nodes were removed after surgery? I don't think I was, or if so I missed it. Apparently that is the recommendation for life, even if only a couple of nodes were removed.

I was reading through some forums and found someone who had lymphedema triggered when she got 3D nipple tattoos!

HPFULL

SDWomen / Yes my Onc says no blood draws or blood pressure checked on my side that had lymph nodes removed ever again. I never heard about the lymphedema from nipple tattoos! That sucks I wanted to get that on my surgery side as I had my right nipple removed since the cancer got in in there. That makes me nervous now.

Misha13

HPFULL-Awesome news!! Yay! No chemo for you!!

SDWoman-I was wondering the same thing! No one has said anything to me either! I was sort of assuming maybe I didn't have enough nodes taken to cause lymphedema? Let us know what you find out!

SDWoman

Misha. This website, the Koemen for a cure website and the National Lymphedema Network all indicate to avoid it. If this is the recommendation, why aren't we being told? I also sent an email to my BS for his opinion and should hear back tomorrow. I will let you know what I hear.

HPFULL

Your Onc should have told you SDWoman and Misha . Mine was adamant about no blood draws or blood pressure cuffs on the lymph node biopsy side

Misha13

Well that just sucks! I guess I haven’t seen my onc yet, but I have seen the PS twice and the BS once-seems they might mention that as they dealt with the nodes.

I don’t think I ever told you all; I did get the other two drains out on Monday, so I am drain-free!

HPFULL

congrats on being drain free Misha🙌.

You made a good point...my BS never mentioned that either. The onc told me and I was a bit shocked. It would seem like the BS should say something since they took outbthe lymph nodes. When I first went to Onc the nurse took my blood pressure and I had no idea they were only supposed to do that on my left side

Mariett

First chemo finished and went smoothly. No side effects yet but I'm sure I will feel some in the next few days. With all the drugs they give you it's hard to know which one the side effects are from😂. HPFULL I had all nodes removed from the right side and my surgeon told me to be very carefully with that arm. All blood draws and vitals should be taken from the other arm. Watch out for scratches, bites, sunburn etc they can all lead to infections that your body can't fight of too well because no lymphatic fluid to help and this can cause lymphedema. My movement is nearly back to normal by doing the usual arm exercises but I scrubbed the bathroom walls the other day karate kid style, wax on wax off and I felt so much looser. Misha13 I'm glad to see you are back in positive thinking mode. I have heard of people needing more chemo after surgery. I hope you hear from others in your situation and see how they are doing. Good luck at your appt tomorrow. Sending prayers to everyone going through this journey 💗

SDWoman

My BS emailed back with the following regarding my lymphedema risk.

Unfortunately, there is a lot of conflicting information on the Internet in regards to lymphedema. Well-designed, quality studies from the past 5 years have shown that patients who have less than 5 lymph nodes removed have NO precautions in terms of blood pressure cuffs, labs, and IVs on the operated arm. Thus, you have no restrictions.

Skygirl44

Mariett-so glad your 1st infusion went well... my first one is next week so I'm trying to just be positive that mine is going to be good as well. Regarding the lymphedema I wish I had better mobility at this point. I'm probably about at 80% with my left arm but my PS said I needs to be 100% in order to have radiation. So I'm seeing a lymphedema specialist once a week now , along with doing my exercises at home to get that arm completely over my head. Who knew all of this would be part of the BC process?

Thanks for everyone's tips regarding the upcoming chemo, I had my meeting yesterday at the Infusion center so I'm feeling a bit better going into all this eventhough they upped my Taxol to 12 rounds now. (Originally 4) not sure why ? need to ask about that...

Hope everyone has a good day!

SuQu31

SDWoman, conflicting information is an understatement! After my surgery, there was a note on the white board in my hospital room stating no blood pressure or blood draws in my left arm. I had 3 nodes removed. (I think I’m the only one who looked at the white board, btw, but the nurses were aware). My BS, who I saw a few days ago, says my swelling is not lymphedema. I had to have a Re-excision on that side because of close margins after mastectomy, so the arm and armpit are still swollen from that. I will try to take common sense precautions and will TRY to avoid my general over the top worry, but I wish the issue had come up before surgery so I was not researching from my hospital bed

Wigging2000

HPFULL so happy for your no chemo news! Now to keep healing and move onward!

Marriett thinking of you and glad your first treatment went well.

Re: lymphedema...I had a PT come see me while in the hospital to educate me about risks after my first surgery. I got a whole 3 pages of precautions and that includes no IV or BP in sentinel node arm. What do people do if they have sentinel nodes taken on both sides I wonder?

Misha, congrats on a drain free life! Please update us about your appointment.

I worked a “full” week this week (I normally work 20-25 hrs) so I’m proud of myself and glad to have tomorrow off. I went to dinner with a friend tonight and forgot about cancer for a few minutes, it was lovely and I needed that. Oncology appointment on Tuesday and anxiety is building but at least I’ll have answers. How bad would it be if I just didn’t go? (Not seriously considering this, just fantasizing a bit)

Hugs!

HPFULL

Misha thinking of you and hoping you get a good plan of action tomorrow.

Wigging- I had a CT tech that had breast cancer and melanoma so had lymph nodes removed on both sides....I had the same question you did. I asked her and she said she tries to just pick the best side and that draws are worse for your veins than injections? I have no idea if this is the case, but interesting. I so know that anxiety. You are going to feel so much better just to have a plan and know. Hopefully no chemo is in the card for you. I think the waiting is the worst part of all this. I start Tamoxifen tomorrow and see Radiologist Tomorrow as well. 

I went to see Bohemian Rhapsody today. It was so good and it was so nice to have my brain completely disengaged from this whole cancer world that seems to consume my days. I was thinking I should just movie hop all day lol.

Hope you all have a super night! Hugs to you

Munmunmary

Marriott - praying for a smooth chemo day with minimal side effects.

SuQu31 - congrats on your path report!

Misha - been thinking of you. Sending you a big and hug! Once they come up with the plan, you will be on your way!

RcCalimom - I had BMX on 10/8 and exchange surgery in 12/20. I didn’t need that many fills and partly because at that point I had met my deductible so I wanted to take advantage of that. Fat graphting, that has been my silver lining. After surgery I would touch them because they felt sooo much softer than before. Didn’t realize how hard those TE were.

One day at a time girls and one step in front of the other.

SDWoman

Wigging good for you on a full week of work! I go back on Friday the 18th and then will have a 3 day weekend with the 21st being a holiday.

MunmunMary Can you tell me more about your experience with the fat grafting? Was it worth it? How was the pain and the recovery? Right now I am a little lopsided, not bad, but noticeable to me. Mine to are quite firm and don't feel real at all! I think I will have my first and hopefully only fat grafting around April some time and wondering if it's worth going through.

Yesterday I got my steristrips off and got to see my scars for the first time. They are looking so good! In 3 weeks I will go and get the few stitches that I have out. There are a few stitches for me where the incisions come together since I did the nonstandard goldilocks method.

RCCaliMom

Hi December Ladies!

Misha, yay for drain-free living!!

Mary - thanks for telling us about your positive experience with fat transfer - that gives me hope! Was healing from the lipo difficult? Did you have to worry about infection, etc.? I haven't even researched lipo/fat transfer to implant site yet (hands are too full with all of the BC/hormone therapy research etc.).

Marriett - how fantastic that your first chemo went smoothly!!

HlPFLL - I loved Bohemian! It is coming out as a sing-along now - I am all for that!

I also have seen my PS 3 times, my BS 1 time, and my Onc 1 time since mast & lymph node biopsy (I had 3 taken) surgery, and no one mentioned anything about the blood pressure or blood draw issue. Hmmm...so weird.

It sounds like everyone is moving along. I did get some bad news yesterday - the onc sent me to get a bone scan because I have been on thyroid med since the birth of my youngest (11 years), and apparently, thyroid meds can thin your bones!!?? Never heard this before...and the onc decided to put me on an AI, and AIs may also have bone-thinning side effects. Anyway, the bone scan showed that my bones are in the "yellow" zone - not as dense as they should be, but not in the red - so I have to take some prescription med along with Vit D and calcium supps. The last thing that I wanted was another prescription with side effects (not to mention, now worrying that I will turn to dust as my bones crumble to the ground while my kids watch in horror)...but of course, it could be so much worse. I feel really pissed, though, because why didn't the endocrinologist ever tell me that the thyroid med could negatively affect my bones over the last decade? Honestly, three months ago I thought I was so healthy, lol!

Wigging2000

oh RCCali, I totally understand your feelings about “I thought I was so healthy 3 months ago”...as I think about all my body parts wasting away with tamoxifen or AI or chemo plus all these things, along with my frankenboobs....it just makes me sad. Just 3 months ago for me too, I had lost 25 pounds and felt the best that I had in years. I was 45 and feeling like 30, now I feel like I’m headed straight for 65 plus (no offense to anyone here that may be that age...it’s just feeling like it’s going to happen a little too fast!)

SD woman glad your scars are looking good. Mine are doing a little better each day. Smart choice about the one day return to work backing up to the 3 day weekend!

RCCaliMom

Oh my gosh, me too, Wigging - exactly!! It's like I feel so fragile now, but of course I don't want to be fragile! I think I maybe am developing some PTSD...I need to ask for a referral to a counselor.

Misha13

Okay I have a plan, and my MO and new RO are both super positive that I am curable!

I will do rads starting at the end of this month for five weeks or so, then it’s the ovarian suppression shot (Goserin?) and an AI.

I’m totally good with all of these, even though I do worry about my skin-I am very fair skinned!

I’m considered high risk for recurrence, but not already knocking at death’s door like I was thinking.

CaliMom-Im sorry about your bone issues. I’m glad you can take vitamins and a script and that it can be dealt with that way. I also LOVED the imagery of you crumbling to dust in front of your children! That sounds funny to say, but it was a humorous picture you painted!

I will go back and read your signatures, but is anyone else besides CaliMom and I also doing an aromatase inhibitor??

Also, neither the MO nor the RO said anything about lymphedema today! I guess we’re just supposed to know this information?? Lol

Have a great weekend everyone!

HPFULL

Misha, so glad you have a plan. It sounds like a very positive solution, and I know it's going to work for you

RCCalimom- No one said anything to me about thyroid meds thinning my bones argh! I have been on thyroid meds for years. When I asked my Onc about side effects  of Tamoxifen he said "Oh there aren't any really."  I was thinking BS! BS! Then he says "Do you still have your uterus?" Me- I am thinking um, yes! read your notes Mr.!!!! He told me there is a slight risk of uterine cancer and bone loss, and then rushed me out. It really pisses me off when doctors do that. This is a bit life changing could you spare more than five minutes after I wait an hour to see you?! Ok rant over. On the brighter side my RO was great. I asked him all the questions I asked my MO and he answered them really thoroughly and didn't rush me. I will be having 6 weeks of RADS to whole breast and lymph nodes. It's funny because BS said that the amount of cancer in my lymph nodes was too small to count so I wasn't expecting to have all my axillary lymph nodes radiated. RO said risk of lymphedema prior to radiation is 2% and 6% with radiation.

Are any of you working during rads? He said that the first 3 weeks are nothing and then after that I might start feeling red and get a rash.

Wigging- Maybe feeling like 65 is the new feeling like 30?

Happy Friday! I hope you all have a fun weekend.

Misha13

HPFULL-Haha yes I feel at least 65 now after chemo and surgery! Nothing wrong with that if you are actually 65!!

I will go back to work on about the third week of rads. I’ve had this school year off so far, so it’s time for me to get back! Hopefully the SE’s won’t interfere with work. My prep is the last period of the day, and I’m sure my principal will let me leave early if I need to.

When do you start rads?

HPFULL

Misha- I do my simulation 1/15 and hope to start the week of. The dr told me The first few weeks I’ll hardly notice anything but as time goes on I’ll get more fatigued and read and possibly get a rash

Munmunmary

Mischa - ok you got a plan in place. Sounds like a good plan. You got this girl! Baby steps.

Wiggins - congrats on your week of work. Smart thinking on your part with bumping it near a long weekend. I started back at work and feel so behind. But I have decided there is only so much I can do. Tomorrow is a new day. I also feel you about feeling healthy” a couple months ago. Some days it’s surreal that we are going through this. I remember at the beginning when I had the genetics apt, they checked off breast cancer as my past medical history. I guess at the beginnings I was just in disbelief and I couldn’t check off that box.

SDwoman and RcCalimom - fat graphting was easier than the mastectomy. NO DRAINS, so that is clearly a win. Recovery was much easier. I didn’t really take anything, but the PS wanted me on ibuprofen I think to control the swelling. It was a same day surgery so no overnight stay! Pain and recovery was considerably much easier. Infection is considerably lower too. Mind you, I had an infection after my mastectomy that had me keep my last drain for about almost 4 weeks. They were very careful with infection this time around. Just found out that I am allergic to the skin glue so my incisions look a little more red and angry than I would like. So the question was it worth it? For me personally, YES! I asked my friend who had the surgery 3 weeks before me and she said the PS lets you choose where they get the fat from. I asked for my outer thighs (if I had a choice). On surgery day when the PS came with his marker, he ended up taking from my abdomen, sides, and outer thighs. The area where they put the fat (upper part of my chest) feels so soft like a baby’s butt. The biggest discomfort was the bruising. That show up 2-3 days later. Deep deep purple! Discomfort for me was like pressing or putting pressure on a really bad bruise.

Hope that helps!

RCCaliMom

Happy Saturday, everyone! Misha, your plan sounds great and I know that it will cure you!! Nice to know that your RO seems great, HLPFLL! Good job to Wiggins and everyone else that worked this week!

I am glad that my vision of my bones crumbling to dust amused you - it kind of made me chuckle when I wrote it - we have to laugh at this stuff, right! I got to see a nutritionist to talk about supplements yesterday (she is part of the cancer team), and she assured me that I won't break! I just need to be diligent about taking calcium and vitamin D, and a once-weekly pill called Fosamax. I can also go back to doing strength-building exercises soon - all of this will help to reverse the bone-thinning caused by thyroid meds. It made me feel so much better to know that this is something that can be reversed and improved!

Misha, I am on the 10th day of the AI now, and it really isn't bad! The side effects (the most common being joint stiffness) are pretty minimal so far - I do feel stiff when I wake up or stay seated for a while, but doing stretches fixes that. It king of reminds me to keep stretching and moving around, which is a good thing.

HPFULL

So I have this wave of depression that hit me this weekend and I don't know hat is going on. I went to dinner with family tonight and everyone has someone that they know that went through this that they want me to talk to or has an opinion about things and I know they all mean well, but I am just tired. I like the RO, but I also feel like everyone acts like this is no big deal and that I should just power through it and I just feel so exhausted like a whole new wave of tired has set in. I came home and just cried last night and feel like I could just cry again.

Ksantizo

Hello! I'm brand new to the website! I was diagnosed with Paget's Disease and DCIS on the left breast and had a double mastectomy with tissue expander reconstructive surgery on Dec 26th. I have began filling my expanders and realized that the area under my armpit on my right side is beginning to swell. I had my drains removed on wednesday and today is my first day moving around with them unwrapped. Should I be worried