December 2018 Surgery Support Group

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    Welcome Ksantizo. I think any swelling is reason to call your doctor’s office, but I’m not en expert in these things. I never did the expanders, so not sure there but maybe you should take it easy as far as moving around today and see if that helps.

    HPFULL it sounds like you are having a down day. I’m telling you I am up one day and down the next. Having some arm pain here the last 2 days and it’s scaring me...it even kept me up last night...just out of the blue. I also feel like there is a cloud hovering over me as I await my MO appt on Tuesday. I really think each new step in the plan or each new side effect or pain has the ability to knock us down. But really, we just started this process a few months ago so I think we are all grieving still in our own ways, along with trying to be brave and fight and keep our heads up and live like nothing is wrong. We can do this, but we will have our down days and we can’t be ashamed of that!

    If you really feel like a true depression is settling in though and you’re not being treated already, please speak with your doctor. I have been in treatment for depression for a long time. Life events like this can certainly trigger depression.

    Hugs

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  • Misha13
    Misha13 Member Posts: 240
    edited January 2019

    Welcome Santizo-I didn't have anything like that, but I would definitely call your PS and let him or her know. It's probably just fluid that can be drained off if it doesn't go away.

    HPFULL-Im sorry you're feeling this way. Well-meaning people are just trying to be helpful. Others without this disease have no idea what it's like to go through this. Take what they say with a grain of salt. I just smile and say “I'll let you know if I want to talk to your so-and-so, thank you for thinking of me." It's frustrating and feels isolating that others really don't “get it." ....have to go for now.

    Back...I was just going to add maybe a cancer support group through your onc’s office? Sending you a virtual hug!!



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  • Mymomsgirl
    Mymomsgirl Member Posts: 174
    edited January 2019

    HPFULL I get what you mean. When this whole rollercoaster started I had to tell my husband that he had to talk to his sister because I can't deal with the 50 questions she will ask every time I see her, just let her know when I want to chat about it I'll bring it up. I also have to roll my eyes at those people who say "well it is only stage 1" and in my head I'm like I still have to check the cancer box from here on out.

    Well I meet with my MO on Tuesday so we will see what other life altering items happen during that appointment.

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  • alto
    alto Member Posts: 233
    edited January 2019

    HPFULL, I have been feeling fatigued from all this too. I think between the diagnoses, the treatment, the way things drag on, the crappy, cold weather (where I am anyway), dealing with people who don’t understand, it’s just too much sometimes. Wishing you some better days ahead. Hug!

    Welcome, Ksantizo! I think you should call your doctor

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    mymomsgirl...the “only stage 1” thing really stood out to me today. I honestly might have said something like that to someone before I entered this “world” and I’m sorry if I ever did. Now...like you said, we check the “cancer” box forever and hope our “only stage 1” stays that way. Perspective is a powerful thing! 😞


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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    thank you Misha Yes I am starting a cancer support group next week and I am going to make an appointment with a therapist at the hospital

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    so I went to PS today thought I was fine. The recon doesn't look great as there is still a big flat area where tumor was taken. So the ps says oh that tissue is very hard like he is surprised. This is the tissue he took from under my arm and pushed through to fill in tumor space. He tells me it's not really dead or alive and is like “zombie" tissue just there not really doing anything and will get a bunch of scar tissue around it 😢I explain my nerve pain and he tells me maybe I could retrain my brain by touching the aggravated area more. I couldn't hold it on I started crying in his office. I

    Not feeling well

    On top

    Of things and have a horrible Migraine. I just cried and cried today. I feel like some of these men doctors act like oh well no big deal. Wondering if it was their penis if it would be a bigger deal ! Sorry needed to rant. I see a counselor Thursday ... so tired

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    HPFULL so what is the plan for your nerve pain? It’s sad if he dismissed your pain. That’s not fair at all.

    I get migraines too...actually went to my neurologist today. It’s so not fair to get one of those on top of everything else but not shocking since they are triggered by stress (at least mine are).

    I’m hoping that your counseling appointment is very helpful for you...hopefully you are looking forward to it. I also hope your counselor is not a man! Hahahaha. I prefer female doctors but I happen to have 3 males on my current cancer team. All three of them seem to be quite meticulous so I am taking that over the bedside manner at the moment. I understand your comment very well and agree with you. If this were a men’s issue I think we would have much less unpleasant treatments!!!!

    Hugs, hugs, hugs. It’s going to get better.

    Wish me luck ladies...Oncotype results tomorrow morning.


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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Oh Wigging, that's right tomorrow is the day for you! Sending lots of good vibes your way. Hope to hear some good news for you tomorrow.

    So the nerve pain plan he had was this....rub the areas to bother me to create MORE friction intentionally while at the same time telling myself that it doesn't hurt  as to re-train my brain. That sounds soooo absurd to me, like the pain isn't real and is all in mhy head. I think that is the biggest crock. I am going to try for an appointment with BS instead of PS. It's just so frustrating to be dealing with ridiculous answers like that. Now I need to make yet ANOTHER appointment, as if I don't have a enough dr. appointments lol


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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Mymomsgirl- good luck tomorrow I am hopin you get good news. Yes love that when people say only stage l, or oh but they caught it early, or my favorite at least you get a free boob job. argh

    alto hope you are feeling less fatigued.


    Misha  and all of you thank you for your kind words. You are all the best. Hugs 

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    My Oncotype was 11...less than 1% benefit from chemo so I have escaped that step. So thankful and overwhelmed. On to tamoxifen, follow up in one month to check depression symptoms. I love my MO!

    Had champagne at lunch to celebrate. Real, French champagne. My journey is certainly not over but I’m thankful for this news today.

    Hugs

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  • Misha13
    Misha13 Member Posts: 240
    edited January 2019

    HPFULL-I totally agree about if this was a man’s disease the treatments would be different! Change how you think about it. That’s such crap! I hope you can get a better, more helpful response from your BS.

    Wigging-Yay!! Woo-hoo! Great news! I would have celebrated too and I don’t even drink!

    Mymomsgirl-Hope you got good news too!

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    oh wigging that is amazing news!!! I am sooooo happy for you! Your MO sounds amazing. I like that they are checking you in a month for depression. I didn’t even know that was a side effect. Hugs, hugs, and more hugs to you

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    Misha, thinking of you! You have certainly deserved a drink or two along this path that you’ve walked. Or, since you don’t drink...chocolate maybe? Please keep us updated!

    HPFULL, I have a long history of depression so they are closely monitoring me for any worsening of symptoms. People with it in their history are more prone to increased depressive symptoms on Tamoxifen. So, I’m being very careful.



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  • Misha13
    Misha13 Member Posts: 240
    edited January 2019

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5412427/

    I just came across someone on a different board saying they take Melatonin for its anti cancer properties. According to this study, it most certainly does have anti-cancer properties! Thought I’d share!

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    So interesting! It sounds like it helps with the effect of radiation and chemotherapy too. I could find dosing. Do the other threads share what the optimal or safe dose is?

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  • Skygirl44
    Skygirl44 Member Posts: 13
    edited January 2019

    great article Misha! I have been taking Melatonin for years to help me sleep. So I’m definitely going to continue using it now. My Onocologist said it was fine too. I take 5mg time release. I needed it last night for sure before my first A/C infusion today...

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Thinking of you skygirl. Good luck today. Hugs to you :)

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    sky girl...wishing you peace today and as you move forward with your treatment. You can do this!

    I used to take melatonin. I take “harder” stuff now (lol) but may add it back into the mix once I break down and start popping these tamoxifen pills!


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  • Misha13
    Misha13 Member Posts: 240
    edited January 2019

    SkyGirl-Wishing you luck and low SE’s on your chemo!!

    The thread I was reading was about sleep troubles and the person who mentioned it said 20mg is the therapeutic dose. I confirmed that 20-40 is the dose. Also, did find reputable cancer place (Sloan-Kettering) that says these studies have only been done on mice, but as the linked article says, pursuing the study of melatonin in humans is not financially rewarding, so there’s little incentive to do so.

    I’m gonna try getting off my prescription anxiety med, which I use for sleep, and try the high dose of melatonin!

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  • SDWoman
    SDWoman Member Posts: 113
    edited January 2019

    Skygirl sending good vibes your way!

    Misha I was following that sleep thread as well. I suspect we may have to work up to the higher dose over time? I have tried melatonin in the past for sleep and it didn't help me at all! Maybe a higher dose may work?

    I might try the magnesium that was suggested for sleep on that thread. I had insomnia before all this and now I am REALLY stuggling! Probably the lovely effects of perimenopause.


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  • Mymomsgirl
    Mymomsgirl Member Posts: 174
    edited January 2019

    So this week not only brought an appointment with my medical oncologist but I also received a call Monday for my radiation simulation on Wednesday. First I met with my MO on Tuesday and I have to say he ticked me off a little. First of all I am "Stage 1" and that is not supposed to be a big deal right...lol. Well the guy would not stop talking about chemo and what everyone else had said this is a standard surgery/radiation/tamoxifen event and I wanted to talk about the tamoxifen. Well long story short he is ordering the Oncotype test and there will be no decisions until those get back and I finish radiation. Needless to say Tuesday was not a good day so I had a little wine with dinner

    On Wednesday morning I met with my RO, whom I like. I will have 15 treatments since I had the Intraoperative Radiation. I asked him on the Oncotype and he said he I'm presenting as a classic low risk and he would be surprised if it came back high. He also said that there are some studies out there that even say that the if you have a moderate score that chemo doesn't really have an added benefit. I was so focused on radiation and never really even thought of chemo since my nodes were clear and I had great margins.

    The simulation was interesting, since I had the left side I had to do a CT with normal breathing and then again after I learned how to hold my breathe for DIBH which can help avoid exposure to your heart. I didn't too bad, I was worried that I would panic with the nose plug and the snorkel device, but it was okay. The only issue was that after laying there for 45 minutes with my arm above my head I had to have the nurse help me move my left arm, it was stuck. I'm guessing that is because of the lymph node surgery and that I haven't been able to lift much for a month now.

    I'm sure I can speak for all of us when I say I'm ready for a week without a doctor's appointment. Next stop is next Wednesday for my Image Verification where I will see if I'm breathing normal or using the DIBH technique and check to make sure everything lines up.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    mymomsgirl, it sounds like you need a hug, a drink, and some chocolate. I had oncotype testing also...I am also stage 1...and it did come back with the result being no chemo. I will wish for you that yours does as well.

    I had ONE week in January with no doctor appointment, it was blissful! I may actually get through next week with no appointment too. I have a tiny spot on my incision on the cancer side that is leaking a tiny amount of fluid...eek! Hoping it goes away and that I don’t have to get checked for that

    SD woman I was thinking of you today. Glad you checked in! I might take magnesium too...I’ve heard it staves off tamoxifen leg cramps.

    I’m headed out of town this weekend with my oldest daughter for her cheerleading competition. It’s a mini victory for me because I wasn’t sure if I’d be able to do this trip. Not only am I doing it but I’m driving and it’s just her and I! (She will be carrying the luggage though).


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  • Mymomsgirl
    Mymomsgirl Member Posts: 174
    edited January 2019

    Thanks Wigging2000, I'm hoping that is the case. Enjoy your trip, it is good to get away. I actually went to NYC last week for our company kickoff so I guess I had one week without an appointment (even though I was supposed to meet with the MO, changed that around). I got the okay from the BS and PS because it was a short flight and as long as I lifted and pulled nothing. Thankfully I was traveling with 2 colleagues, we took 2 big suitcases and 1/2 my clothes went in one and the other 1/2 in the other one and we did it, train ride to the city from the airport and all.

    This weekend we will probably be doing nothing since we are supposed to be snowed in...we will see if the weatherman is right or not.

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    thanks for the melatonin dosages Misha:) I will give it a try.

    What a day you mommysgirl. The Oncotype results waiting stinks. Mine came back at 15 and I am stage 2 so I hoping you get low results.

    Wigging- enjoy your trip, it will be nice to get away and have some fun time.

    Hugs.


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  • SDWoman
    SDWoman Member Posts: 113
    edited January 2019

    I went walk to walk laps at the local pool and found those annoying boob pads that never stay where they are supposed to in a swimsuit can now be removed. What a joy!

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    that’s great SDWiman! A silver lining

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  • Misha13
    Misha13 Member Posts: 240
    edited January 2019

    Mymomsgirl-Yikes! I’m afraid of the rad set up! It’s really hard for me to put my left arm above my head. I asked my RO about the breath hold thing and I may not have to do it. He went to Haarvad (insert accent here) for his medical degree and then went to a California school for his onc degree and said they don’t do the breath hold on the west coast! I expressed my concern about that and he assured me with the machine and how they program it, that I will not receive rads on my heart! Going to put my trust in him and frankly glad because nose clips and a snorkel sound horrible. I’m sorry you have to do that.


    SDWoman-I love your pic btw! I’m glad to hear about the swimsuit! We deserve every break we can get!

    HPFULL-So, does that mean with your Oncotype and staging that you have to do chemo?? Fingers crossed!

    Hope everyone has a good Sunday afternoon!

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  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Misha- No chemo. Oncotype was 15. They will do RADS to lymph nodes and whole breast. :) 

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  • Misha13
    Misha13 Member Posts: 240
    edited January 2019

    Hello December ladies! Well, I got a call today that my MO wants to do the Xeloda oral chemo after rads! I feel relieved but also nervous that I will be working and doing a chemo.

    I’ve been reading these boards and searching for others who had a lot of cancer left in their lymph nodes after chemo and surgery and it always seemed like they had more chemo, so I was nervous enough wasn’t being done.

    That’s my update. I start rads on Wednesday and I think I am going back to work early as well. I’ve been home long enough! How is everyone

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