Newbie here

bandwoman1234

Hi everyone. I am finally building the courage to post. I have been reading various posts with great interest the last few weeks. Tomorrow will be 19/34 rads. It has been a bumpy ride with twists and turns and ups and downs. I went through my surgery pretty well until the third week. I got a stomach virus and developed a seroma. That week sucked the life out of me as I had to be aspirated and was vomiting in the surgeon's office all at the same time. My swimming had to be put on hold so I had to get back to walking to build strength before rads began. I did all the initial scans and chest x-rays and the normal tests before rads started. Every time I had some type of scan or x-ray for one thing another problem would crop up. They found spots on my lungs and when they did a CT scan to check that out a nodule showed up on my adrenal gland. The lungs spots were benign. Whew! Then lesions showed up on my thyroid during the CT scan for rads. I am having a biopsy of my thyroid in two days after having an ultrasound a few weeks ago. I have had to wait two and a half weeks to get into the endocrinologist. During my breast ultrasound back on March 11 my rotator cuff got injured and I have been in physical therapy and rads at the same time. It has been difficult. Sorry I am jumping all over the place.  I am nervous about this thyroid biopsy. I have gone through the usual shock and eventual acceptance of bc and I have had a lot of support. I am single and live alone with my cat so I really needed that support. I have no family in the area. In fact my sister and I are caregivers to my mom who has dementia and is still living alone. I would travel three hours to my mom's house and stay several weeks to give my sister a break. I have not been able to even visit my mom since my diagnosis in March as things happened very quickly.

I have been very strong through most of this and all that time that calls, flowers, emails and cards were coming I was feeling very supported and blessed. Now when rads are getting more difficult and my shoulder pain is still there I am starting to feel more overwhelmed and emotional at the same time that everyone around me thinks I am fine, or at least that is my perception. The cards are coming less now and that is normal. Of course I knew this time would come when the initial support would wane and I would start to feel more alone facing this diagnosis. I am a person of great faith and that is the main thing that has gotten me through this far. Anyone else out there identifying with my thoughts and feelings. On top of it all I have felt nauseated the last couple of days and am scared to death that I might be getting this stomach virus again. Thanks for all of your posts. I have learned that I am not alone in this journey and some of your posts have really hit the nail on the head as to what I was also feeling and there is great comfort in that. Thank you all for being honest and being an inspiration.

Love,

Newbie from IL.

 

Janett2014

Newbie from IL, you have really had a rough time! I'm so sorry you are having to go through this. I think you need to let some of the people who sent you flowers and cards know that you are struggling. Surely some of them would lend a hand now. Maybe come up with a list of things you need: errands run, meals, visitors (or not!), housecleaning, rides to doctors' appointments, books/magazines, etc. Is there a good friend who can organize other people to help you? If you go to church there's probably someone there who would line up some help for you. Most people are happy to assist; they just don't know how they should do it. I know it's hard, but now is the time to ask for help -- you need it. 

P.S. The stomach thing sounds AWFUL! Hopefully you are not getting it again. 

bandwoman1234

Hi Janett2014,

I know you are right. I have been single my whole life and I am too independent for my own good! I have many friends who have offered to help and I have let some of them help me. I know they would feel awful if they knew that I needed help and was not asking. I think that now that I am half way through my rads and the surgery is over they probably think that I must be on the last stretch and almost home free. All of that is true (hopefully) but for some reason this last stretch is proving to be more emotional than I had figured. The thought of what  is next is upper most in my mind. Will the fatigue be tolerable and will my skin hold up. That part is getting harder. How will I do on the hormone therapy etc. Will my shoulder get better after my insurance has said enough of the PT? Recurrence??

How are you doing? You have obviously been through a lot. How is the Arimidex going? I will be starting on one of those drugs in a few weeks. Thanks for your post. My stomach is feeling somewhat better tonight. Hopefully by the time I have to start another week of treatments and therapy and the biopsy on Tuesday I will be feeling much better.

Take care.

Bandwoman1234 (Newbie from IL) retired band director

 

Janett2014

Hi bandwoman,

You are right that your friends would probably feel awful if they knew you needed help, so TELL THEM! I can't believe you are having to deal with a rotator cuff injury on top of everything else. Regarding PT, most places will work with you on a reduced payment plan after your insurance runs out. You may not need any more after ins., but if you do, ask them about the possibility of a reduced rate.

Please let me know how the thyroid biopsy goes. How long do they say you'll have to wait for the results?

What kind of bc surgery did you have if you don't mind my asking?

I'm doing pretty well. Thanks for asking. I just started taking Arimidex 11 days ago, so I don't really know how it's going to be. So far so good, but I know side effects usually don't surface for a month or two or three!

My exchange surgery will be on July 16 which is exactly three months after my bilateral mastectomy.

I'm very glad that your stomach is better, and thank goodness the lung spots were benign.

bandwoman1234

Hi Janett2014,

I am not sure why my info is not posting under my post like others are. I think if you click on my user name you might be able to see all the info. My surgery was on March 27, 2014 and I had a lumpectomy (insurance calls it partial mastectomy) and SNB with three nodes taken. Since I had some complications with the seroma my radiation didn't start until the second week of May. I have a friend that has been kind enough to get me bottled water every week as I can't lift heavy stuff because of my shoulder. She came over tonight and I tried to tell her that for some reason I am having a harder time emotionally now than at the beginning. I am so used to keeping stuff in that it is not easy for me to really let people know what I am feeling. I wouldn't even allow myself to cry until recently and that is not good. It felt good to let it all come out finally. I have not gone through the massive surgery as you have. I can't even imagine what that is like. I must claim ignorance on some of what you have to face because it is much different than my situation. Did you have lymph node involvement? Some of our specifics are similar. My Oncotype was also 16 and I have IDC stage 1a. I am not familiar with what exchange surgery means. Is that a reconstruction? You have a lot going on for sure. I have fibromyalgia so that is one of the reasons I am so concerned about the hormone blocking drug as I know it might very well exacerbate my muscle and joint pain. I am already dealing with quite a lot of fatigue from the fibro and the radiation.

It is good to talk to someone on here. I will let you know how the biopsy goes. I hope you have a good week. Are you still healing from your last surgery? You have been through so much and then having to face another surgery in a few weeks. God Bless You.

Bandwoman

 

Anonymous

bandwoman, Welcome to BCO!! You'll find a lot of support and a bunch of wonderful ladies to help you through your diagnosis. Rads was difficult for me as well - it took a toll mentally. You're not alone in how you're feeling. Best wishes on your thyroid biopsy. Please let us know how it goes. Sending good thoughts your way! FYI - my son was in band for six years. Assistant Drum major for two and Drum Major his senior year. I miss the marching band days!!

bandwoman1234

Thanks Slow Deep. BTW I love the cute little dog pic. Is that your baby? Southern California..... I can only dream.LOL

Getting ready to go off to rads and physical therapy. I am hoping this will be a better week. I don't feel nauseated today so that is a big improvement over the weekend. I pulled a muscle in my leg when I was walking on Friday afternoon after my treatments. I wanted to scream! One more thing. I didn't walk the last two days and it is much improved. I am a lap swimmer but haven't been able to swim for a few months so I tried walking. I have a foot problem but so far it has not been a problem.

I am looking at your stats. This is a real education and I realize everyone has a different journey. I am very new on here so please forgive my ignorance. If you don't mind me asking I see you have two different diagnoses. Is that one for each breast? I didn't realize you could have surgery in between chemo and radiation. You have been through a lot. How are you doing now? Do you feel like you are slowly getting your life back now. I sure hope so.

I love your Japanese proverb. I am very tenacious and I know I will eventually be okay. Take care and send some of that California weather  to the Midwest please!!!!

I am so glad to hear of your son's band experiences. Drum major. Wow! Congratulations. Warms my heart. Take care.

Bandwoman

Janett2014

Hi bandwoman,

I'm glad your info shows under your posts now. By the way, I'm an almost-retired teacher: one year left. 

I will try to answer your questions. I was originally supposed to have lumpectomy and rads, but then the pathology came back from the lump surgery. It showed positive margins on the one side and cancer on the other side (it was a very small spot that only showed up on my pre-surgery MRI). My BS expected that tiny "new" spot to be benign, but it was not. That's when she recommended BMX with reconstruction. The PS put in tissue expanders immediately after the BMX -- same surgery of course. The exchange surgery is when the PS exchanges the TEs for implants. I will have it on July 16, so no rads because there is nothing to radiate and no chemo because of my Oncotype score of 16. Yes, three surgeries are difficult though, and I am concerned about side effects with the Arimidex. Yes I am still healing from the April 16 surgery, but it has been doable. The extreme tightness and discomfort from the TEs started to let up after about five weeks. That helped a lot. As to your question about lymph nodes, I had one sentinel node removed during lump, then the other side's sentinel node was removed during BMX. There were also 4 on one side and 3 on the other side that came out with breast tissue. That's a total of 9, and they were all benign.

You have a lot going on too: thyroid biopsy, a seroma, fibromyalgia, rotator cuff injury, leg/foot problems, not to mention radiation!

I'm glad you let at least one friend know that you are having a difficult time. Maybe the word will get out and you'll get a little more help.

Janett

bandwoman1234

Hi Janett,

So you are a teacher as well. One more year. I remember that time. I had such a good last year of teaching. It was such a good way to end my career. I have been retired for three years now and it has gone by so quickly I can hardly believe it. What level do you teach? My last ten years I had elementary and junior high but I taught all levels including college in my past positions.

 I imagine when you found out you were going to have to have more than the lumpectomy that It must have been quite a shock. I remember when I had my first consult with my MO he mentioned chemo and it totally threw me for a loop as I had only surgery, radiation and a drug in my thought process. He talked me into the Oncotype test and the wait wondering if was going to have chemo was really difficult. The thought of chemo scared me to death. As it turned out I didn't have to have it. I can only imagine your shock when you found out you were going to have to have much more extensive surgery. I am glad the rough part is over from your last surgery.

I went for my biopsy today having this strange feeling that it wasn't going to happen. We have online medical records which we can access and for today it only mentioned a consult and nothing about a biopsy. When the nurse brought me into the room I asked her about the biopsy and she said you are only having a consult today. I felt like I was talking to the wall at that point. Someone really messed up when they scheduled me for this apt. As it turned out it was okay. I met the endocrinologist for the first time and we went over the ultrasound. She thinks it would be okay to wait for six months and do another ultrasound. She said nodules can shrink. If the largest one doesn't then we will biopsy in six months. She did not think it looked suspicious so that was a relief. So I see her again in six months to revisit it.

I hope I still don't feel like this dark cloud is hanging over me. It would have been nice to have some resolution but I am struggling at this point with radiation and shoulder therapy and adding one more thing on my plate would just about push me over the edge.

I finished #20 out of 34 treatments today so the I can see the end in sight. My physical therapy has become so difficult. I am seeing two different lymphedema experts so they are helping with prevention as well as my injured shoulder. This one therapist had me in there yesterday for 1hr and 40 min after having radiation. By the time I got home I was completely exhausted. I think therapy is going to wrap up at the end of next week because my insurance is very stingy on this type of stuff.

If I can continue to do the exercises and improve hopefully I will become pain free soon.

Are you still in school? I can't imagine teaching with all the surgeries that you have had. Hopefully you will have plenty of time to recup after your July surgery. Take care. Nice to meet a fellow teacher going through this journey too.

Bandwoman

 

Janett2014

Hi Bandwoman,

I teach elementary science, and I was out one week plus spring break (another week) for the March surgery. Then for the April surgery, I was out for the rest of the year. I had plenty of days built up, so it was great to not have the teacher responsibilities and worries for the last six weeks of school. I should be fine for starting back to school in late August after my mid-July exchange surgery.

That's interesting that you had a feeling you would not be having a biopsy on Tuesday. It seems prudent to wait six months and do another ultrasound then. Hopefully the nodules will shrink. This way you can concentrate on finishing radiation and shoulder therapy. I hope your pain lets up.

May I ask why you are seeing two lymphedema experts? Did the doctors say you had a greater than average risk of developing it? Just curious since you just had three nodes removed. I'm terrified at the thought of lymphedema, and I wonder if I should be doing something more to avoid it. 

bandwoman1234

Hi Janett,

I am glad you got time off during your surgeries. When you take off and then have to go back to me it has been a lot of pressure. It was always hard finding good band director subs so you never knew how things were progressing where you were gone. Having off in April til the end of the year is nicer I think. I have only had one surgery like that.

As far as the lymphedema experts for PT it was my nurse navigator who said she would like me to see them when she knew I needed PT. In fact I  just mentioned to my therapist yesterday that I would have really known nothing about it as my BS certainly didn't mention it. I developed a seroma so became more in tune with the lymphatic system and started getting an idea of how it worked. My nurse navigator said getting lymphedema is more common in woman who have had the underarm pad of nodes removed. I am not sure what they are called. Possibly axillary nodes. However anyone who has nodes removed can still get lymphedema. I actually see two different therapists and they both concentrate part of there therapy towards lymphedema prevention. The big thing that I have done is they had a script for my oncologist to sign off on and then I could go to a few different places which work with insurance and was able to be fitted for a compression sleeve and gauntlet(glove). I went with the lymphadivas company. I ended up getting a denim looking sleeve. They have all sorts of patterns and some that even look like tattoos. Then they have the plain ones too. I am going to order a second pair which I think insurance will pay for part of those as well. Mine were quite pricey. The sleeve and gauntlet were $184. I will have to pay over a $100 for my part. I wear it when I am doing my weight lifting shoulder exercises, when I am gardening and will wear it when riding my bicycle. I have been afraid to ride yet as I have bad shoulder pain if I move it the wrong way. Probably not smart to be riding until it becomes more stable. I have some breathing exercises which help the lymph fluid move through the body. I have some other things which would be impossible to explain regarding the nodes up near the neck.

Your surgery arm should never have blood pressure taken or injections or iv's. I am not sure what people do if they have nodes take from both arms.  Even bug bites, burns, sunburns, cuts and scratches are things to try to avoid as they can easily become infected and cause lymphedema to take hold.

I ran into a lady at this place that I bought the compression sleeve. She was asking when I had my surgery and I said at the end of March. She said she had hers over 30 years ago and then got lymphedema all those years later. It really made me take this whole thing much more seriously.

I hated that I injured my shoulder the same time as having to go through the cancer journey but the fact that I have had the privilege to learn about all of this lymphedema prevention through my therapists has been a real blessing.

How long is your projected recovery time for your July 16 surgery.  I hope you will have time to enjoy the summer before going back to school.

Well I need to get to bed. Tomorrow is another double apt day with rads and therapy. I have been coming home so fatigued from those if the pt session is long. It depends on which therapist I have and if it is before or after rads.

Today was the first day I had just rads only. I was really excited about that. I actually got to work in my roses this afternoon. Felt like a normal person for a while!

Take care.

Nancy(Bandwoman)

 

 

Binney4

Bandwoman, good for you for getting educated about your lymphedema risk and taking the precautions you need! Unfortunately it's rare for our oncologists or surgeons to offer much information about risk reduction, so it's up to us to do our own research and decide how we want to protect ourselves. Here's a resource some women here at breastcancer.org developed to help you find the information you need:

http://www.stepup-speakout.org

You can check out the Risk Reduction page there for ideas of how to reduce your risk. Janet, any doctor on your team can write you a referral for an evaluation by a qualified lymphedema therapist. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified…

A therapist can give you personalized risk reduction tips, teach you a gentle lymph massage to use prophylactically, measure your for a compression sleeve and gauntlet (fingerless glove) to use for exercise and travel, and take baseline arm measurements for future reference. All good!

If you have any questions or concerns, please feel welcome to come read and post on the Lymphedema forum here at bc.org.

Be well!
Binney

bandwoman1234

Hi Binney,

Thanks for your input. I hope Janett sees this as well. I see that you have been dealing with this issue for quite some time. Thanks for your links. I still consider myself fairly new on this cancer journey but even in this early stage I am amazed at how this information is not stressed early on for cancer patients. When I told a  breast cancer survivor about getting my compression sleeve and gauntlet she had no knowledge of this. I have only had my sleeve for a very short time. The first time I wore it outside gardening I felt totally ridiculous but I do have to admit that my denim pattern does look pretty cool! If I got lymphedema when I could have possibly prevented I  would feel much more than ridiculous. I would feel very stupid for not wearing my compression sleeve knowing that it could prevent a chronic situation in the future.

I am sorry that you have to be dealing with this. I can't imagine what that would be like. I appreciate your involvement with us newbies on here. A little education can go a loooooooooooong way! Thanks Binney.

 

Bandwoman

Janett2014

My BS informed me about LE, and she gave me lots of info to read too. All of my doctors and nurses talked to me about needle sticks and bp cuffs. Since I have had nodes taken out on both sides (5 on one side and 4 on the other), it's kind of a crap shoot as to which side to use. They told me to tell anyone doing a blood draw to not put the tourniquet on too tightly. I have more questions for them now, and I will do some more reading on this site too.

bandwoman1234

Hi Janett,

Glad you were already aware of lymphedema. My BS gave me a big book on Breast Cancer and it mentioned it in there but there was so much info that it was certainly too much to take it all in after just being diagnosed and the shock of that. My nurse navigator is the one that really told me very practical things to help prevent it. In fact I have been trying to decide if I am going to get more sleeves online and bypass insurance or go with this same company I did for the first set. I am a little upset after having pt yesterday. I had been having some chest pain and it was under the part of my chest that really got burned and irritated first from radiation. I thought it might be my fibromyalgia reacting to all the shoulder exercises. My therapist said it is probably fibrosis which is a side effect of radiation. After reading up on it this weekend I am pretty upset about it. I will talk to my RO on Monday and see what she says. Apparently there is a link to fibrosis and lymphedema and no cure. What I am doing now  with the lymphedema specialists is what is recommended for fibrosis.  Geeez, one more thing!

With lymph nodes taken from both sides that would be hard know what to do when you have to have BP taken. I did look at the links that binney sent me and you. It does have some good info on it. My therapist mentioned looked at your hands and elbows and upper arms to compare to see if there is any swelling or heaviness. I guess if you notice some swelling you can use a compression sleeve which would be a good preemptive strike. Hope that helps.

 Hope you have a good weekend. Take care.

Bandwoman

 

Anonymous

Bandwoman, Sorry for the delay in answering - I haven't been on BCO for several days. Yes! That is my rescue baby. I also have a rescue rat terrier, along with a rescue cat.

My diagnosis is for the same breast. I had two lumps - one triple negative and the other Her2+++. I'm told it's unusual - especially when they were so close together. I've always been an overachiever though. Yes, I had chemo first - it's called neoadjuvent. Don't feel badly....it took me forever to understand it all and I'm still learning. I feel much better now, and I do feel like I'm slowly getting my life back. It's a process, so be kind to yourself. Sending good thoughts your way through the rest of your radiation treatments!!

bandwoman1234

Hi Slow Deep,

Good to hear from you. Good for you on your three rescues. I have a Ragdoll cat and she is my baby. Spoiled to death and runs the house. I wouldn't have it any other way! I am glad that you feel like you are getting your life back. My BS the last time I saw him a few weeks after surgery and before rads said this time next year you will have forgotten all about this. Yeah right! He was quite the handsome man and I realized that he tried to sugar coat everything to make it more palatable. I guess that is better than trying to scare me to death!  Your two different lumps does seem strange. I am so glad that you have gone through the dark tunnel and are out the other side now. I can see the end in sight but this last stretch is proving to be difficult. If my skin holds up (my ROs' words) I will have 11 more treatments out of 34. I have 5 more physical therapy sessions.  The next day after finishing rads I see my MO to put me on the hormone blocking drug for five years. Not looking forward to that part. Have a wonderful week. Good to hear from you.

Bandwoman

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