new to forum, diagnostic mammo and ultrasound found large lumps

Brrrr, that is some cold weather. I know Texas can be like Florida where it's so cold you're wearing 3 layers of clothes and boots on one day and then a couple days later it's warm and your wearing flip flops and tee shirts. I really don't like the fluctuations. I do love the few cold days for a chance to wear a totally different kind of wardrobe.

The compound creams for the scar from my port removal seem to be working. I put it on twice a day, and the lumpiness is all but gone and the scar itself is very thin now. Yeah!

I have been looking more closely at the left breast, that had the radiation. My skin is still not back to normal, and I really don't know if everyones' skin DOES get back to normal. It's thicker, more leathery feeling, and is light brownish on the side and center front of the breast.

Best of health and positive thoughts to all.

E, I do hope you made copies of the questionnaire you filled out. I urge you to file a formal complaint against the hospital. You do not need an atty for that. Make copies of everything too. This starts your paper trail. Can you afford to seek some counseling, even if it is once a month. Lets say you decide to speak with an atty about this, one of the first things you will be asked is, are you seeking treatment & what dr dx'd PTSD? In situations like this having a dx from a dr & seeking treatment is a big part of arriving at what is called damages.

I would not hold my breath on being contacted by anyone over the questionnaire. This is why I urge you file a complaint against the hospital, that will get their attention. They need to be called on the carpet, as long as no one will speak up that type of treatment never stops. My dad was hospitalized for heart valve surgery, believe me, anything that could go wrong health wise did. The hospital admin found out very quickly that when I showed up in his office not to ignore me, I would not go away. The things that happened to him in that facility should not ever happen to any patient. I rained down all kinds of hell & grief on that place.

I do hope you can get some kind of help, you need good rest & from what you are describing for sleep is not happening. Keep me posted.

Well, I have to say that I am very disappointed at how slowly my hair is growing back. Most of it is just 2 inches, and some places 3 inches. And it ONLY stands straight up, like clown hair. Not a fun clown either, but a very scary-looking clown, like the one in Stephen King's "It". I've tried various products thinking I'll be able to style it in some way, but the products haven't given me good results. I do love my wigs--they are very real-looking, with highlights and lowlights, and one of them is the length, style and color of exactly how my real hair looked before it fell out in Nov. 2016. The other one is just a shorter version of the same wig. My leg hair and "bikini area" hair grows like crazy. It took a REALLY long time, but my armpit hair finally grew back. I shaved it once and not a single hair has grown back. It's been over a month! It really does depress me about the shortness of the hair standing straight up on my head.

A part of me feels guilty for complaining about this. I went through breast cancer, and things could have turned out so much worse, and I know they have for some other people. It could have spread to more than one lymph node, it could have spread to the chest wall (muscle tissue, I guess), or worse-- spread to some other part of my body. I know folks who have each of these paths to take. But I'm keeping it real. This is my story. What is happening to just me and the issues that affect me, and how I deal with them.

I see my PS tomorrow, and I'll be surprised if I get a fill up. I think my skin has stretched to the max.

Best of health and positive thoughts to all!

Susie, that sounds dreadful what your father went though, and I'll bet there's a lot more you didn't say. Yes, I am keeping on top of the hospital. I got a call today from someone in hospital customer service confirming something, and she ended the call saying my "concerns" will be forwarded to the administration, and someone will be in touch with me. Let's see how long that takes!

I don't know why I said in my last post that I was seeing my PS the next day. Totally wrong! I don't see her until next week. The scar cream compound is working I believe. Originally I got it from my mastectomy surgeon for the 1.5" scar from the port removal. I brought the creams in to my PS at the last visit and asked if I could use it on my mastectomy scars (which are very minimal) and on the newly stretched skin to try to prevent stretch marks, and she said yes. And it definitely worked on the port removal scar, and I HOPE it will be preventing stretch marks on my newly stretched skin. It's hard to tell if it's making my mastectomy scars even more minimal.

Also, you ending up in the ER sounds like a big deal to me. How are you now?

Best of health and positive thoughts to all.

E, I have never done chemo, but sometimes the brain fog is out there, lol. An example, & please correct me. Not long ago, it seems like you signed a post & stated your name is Linda? Did I dream this or what? Regardless, I tried going back & looking & found nothing, ha, ha.

You are so close to winding down this chapter of your life. Its been such a long journey. However, you have prevailed & found an inner strength in yourself that you did not know existed. My mom had radiation & the skin on her back looked sunburn & leathery. Thats the best way I can describe it. Like you, I am not sure if the skin will change back. I wonder if some of your scar cream would help, just a thought.

I am impressed that your husband has lost weight. That is great. I am sure your son is also pleased with this too. I am leaning towards your son went through something that made him question his life in general. Going off the grid as he did he proved so many things to himself. I would like to think one of the most important lesson he learned is being self reliant. You have to admit his life style, just everything changed like flipping a light switch. It sounds like he came out a much stronger person. You would be amazed at the ones out there in this generation that do not have a clue about life & cannot handle becoming adults. I have seen this first hand, up front close & personal. They just can't handle life. My daughter tells them, going to school & working is called life. Learn how to support yourself & be independent. She tells her ex husband's daughter, if you are not going to attend school you need to work a full time job & quit living off of relatives (we call her the trust fund kid). Too much money has been wasted on her going to college, she gets dropped for not attending classes. My daughter says its a generation of lost kids. My daughter's BF, has 2 grown kids that are the very same way. The money that has been spent & wasted because they can't handle it, are you kidding me. So many opportunities thrown away. I will get off my soap box, lol.

The food thing with my dad & that hospital was minor compared to the atrocities that happened during his stay. Fell out of a wheelchair & laid his head open, needed stitches, should have never been left unattended, was tethered to a bed, managed somehow to get loose & fell out of bed not once but twice. Transferred him to a rehab unit on a Friday. Rehab called me & said he does not meet our requirements for rehab, we are not equipped to handle a patient like him you must get him transferred back into the regular part of the hospital. Ever attempt something like that at 5:00 Gave him an anti-psychotic drug that made him psychotic & nuts. He was hallucinating like someone that was not with the program at all. They had the frigging nerve to ask if he was alcoholic because he was acting so crazy. The man had not had alcohol in over 20 yrs. The heavy sedation & over medicating left to the nurse's discretion was the final straw. I managed to get him in a rehab hospital. After their review I met with the head dr & the first words out of his mouth was "your father has been heavily over medicated" & we are in the process of removing those medications. In less than a week his mind returned just as sharp as it was before surgery. One thing I noticed on his floor, lots of older patients & no matter what time of day or night these people were knocked out. They slept through their meals & many were too weak to eat. Those darn nurses knocked them out so they didn't have to deal with them. Like your situation so much more involved. Now this was at one of large leading hospitals!! This should never happen to anyone. You have no idea the hell I raised with that place & his drs. Never let something like this slide.

We had to replace the AC at the lake cabin. Should have done it first instead wasting all those service calls, lol. Had 2 different people come out & give 2 different stories on what the problem was, both were wrong. I do hope yours is fixed now. Our weather is nuts right now. Tuesday was warm, by late night cold, sleeting, a couple of tornadoes all in 24 hours. We have had rain & flash floods for several days & its icing over at night. A lot of people west of us lost power because of the tree limbs breaking under the weight of the ice. We only had some ice on bridges & overpasses. Crazy Tx weather, changes in a minute!! We are on our 5th day of rain, suppose to get a short break on Sunday. My yard is like a swamp, its awful. I am ready for warm weather.

Time for me to get busy around here, lol.

I can't believe it's been so long since I wrote. I am not keeping up with my creams as diligently as I did at first. It's supposed to be twice a day, but now I'm only doing once a day. It's hard to do because I am putting the cream all over both breasts, not just on that little port scar. And it's very greasy and I'm not supposed to wear a bra with it on, and whatever shirt I have on becomes stained.

But the good news is I know the creams are still working. I notice it especially on the radiated skin. It is becoming MUCH smoother, almost normal. And the color is fading as well. So if anyone out there gets radiation and is unhappy with the color or texture of their skin, I definitely recommend that you ask your doctor for a prescription compound cream. what I got is 2 creams. They are supoosed to be mixed together in one container, but my insurance wouldn't cover that cost. So I put the first cream on, which is Fluocinonode 1%, rub it over the area for 30 seconds, the the other is just called "scar gel", and that's the really greasy one, in a pump bottle, and I put that on top of the other and rub it in for 30 seconds.

I see my onc next week for her to check my blood work. I hope nothing is off a little causing me to have a scan, ultrasound, or any kind of test.

Best of health and positive thoughts to all.

I forgot to mention that my blood work came back normal. Yay! I didn't need to schedule an ultrasound or CT scan, whatever, to find out if something's wrong all because some #was slightly below or above normal.
My WBC count is still on the low end of normal, but no biggie.

Unfortunately I didn't get to enjoy my perfect boobs for long
Just when the weather is getting warmer and I no longer had to hide the hideousness of my right breast, I was finally able to enjoy wearing tops that have a scoop neck or V-neck. Welllll, not anymore! I noticed and felt something hard under my skin, going diagonally on the right boob up to almost the lower part of my neck. I took a picture of it and sent it to the doctor to see if she thought I needed to come in. Of course the answer was yes. It's a muscle. Some how the expander moved ever so slightly and allowed this particular muscle to look like its straining to escape my body. The expanders are put in under the muscles, just like implants are. But why this particular one suddenly looks like it's trying to escape my body, is a mystery. Other than the expander moving a tad and shifting how the muscles lay, the other possibility is that through my weight lifting I strained the muscle and caused the shift. I only lift 8 pounds. Just enough to keep sagginess at bay, but not enough to bulk out my arms.

On another subject-- my complaint to the hospital regarding how I was treated when I was paralyzed, I finally got a call from the litigation specialist today. The call happened to come when we were driving home from our impromtu trip to the PS today, and my cell phone only had 4% battery life. So she agreed to call me tomorrow morning. I am normally such a positive thinker, but for some reason I am thinking the worse. That she, or the legal department that reviewed my file, decides "this was really not too bad, the lady is just exaggerating." But i'm not. Every word in my complaint is true, and all 5 of the people i have now let read about what happened, are horrified and can't believe they could behave so badly to me. So, I shall pray to God that the folks at the hospital have the ability to empathize and truly understand what I went through, and continue to go through, as I have PTSD.

Wish me luck tomorrow. I do feel a bit intimidated speaking with her. But I have the truth on my side and a couple things they did to me were BAD, by anyone's standards.

Best of health and positive thought to all.

Post Edited (exqualls) : 3/25/2018 1:02:08 PM (GMT-6)

Linda, I have been kind of MIA lately, its another story. I have been reading your posts, I hope you will keep writing about this experience, more later.

Continued---
so it was night, same old story, hearing lots of "I'm not willing" and having the call button not answered in anything CLOSE to a timely matter. I had to pee, the portable commode was just at the end of my bed. After no one had arrived after pressing the button and telling the voice on the other end that I needed to use the bathroom, the idea of me being able to stand up, as the physical therapists had got me up earlier, I decided to try to go to the commode on my own. Using my arms I lifted my torso from the bed. Doing that was harder than I ever thought it would have been. It took a whole lot of effort but somehow i was able to turn my torso and with my arms, force my concrete pylon legs off of the bed. I felt nothing. Then at great length, I had to use my arms to raise my torso up off the bed ever so slightly (it was all I could manage) and then inch my torso down toward the end of the bed. It wasn't even an inch at a time... probably more like a half an inch. My pylon legs just dragged along with me as dead weight. I began pressing the call button again because I realized this was going to be harder than I thought. But in the meantime while I was waiting for someone to come --lol--I continued to half-inch myself down the bed. By the time I got to the end of the bed, I could see that it must've been a "shift change" as all the nurses were gathered RIGHT outside my open door, which is what they did every shift change. Since I had finally gotten to the end of the bed, and the commode was just in front of me IF I stood up out of bed, my plan was to stand up, then twist my torso around so that I would drop onto the commode and do my business. How i would get back in bed was never a thought. I just wanted to empty my bladder a whole lot sooner than would happen if I waited until someone showed up and was willing to help a 2 max.

However, by the time I got to the end of the bed I think I knew that this was something I really wasn't going to be able to do. So with all the nurses right outside my door, I started yelling "Nurse!" No answer, not a glance in my direction. So I did it. I used my arms to lift my torso up off the bed, and i was basically in a standing position. It didn't last a millisecond before I knew I was in trouble, and my concrete pylon legs gave way underneath me and I went straight down, just like the Twin Towers on September 11th. I'm saying that literally. I'm a very visual person, and literally as my two concrete pylon legs crumbled under me, at the same time I envisioned the Twin Towers, right next to me, as they collapsed and crumbled, I collapsed. I didn't CHOOSE to think of the Towers, it's just the vision that my brain had, probably since paralyzed folks often describe their legs as useless, concrete pylons. I was still seeing the dust from the collapse of the Towers when I finally screamed bloody murder for help, and turned to see what had become of my lower half. I fully expected to see dust, and crumbled parts of me. It's funny how the brain works that way. Logically I guess I could have realized (even at that time) that legs cannot crumble into the dust and debris as did the Towers, but logic was nowhere. I honestly was SHOCKED when I saw that my lower half was indeed NOT dust and crumbles. But my feet and knees and ankles were all in unnatural positions. If you're as old as I am and watch football, maybe you remember the Joe Theisman leg break. HORRIBLE to see. Even the announcers are squeamish sounding whenever a replay is shown of it.

Nurses finally arrived, and I can't envision how I was put onto a gurney, I can only remember what I heard two nurses say. One said "why didn't her mattress alarm go off?" and another said "and how did her bed get moved so far off the wall without that alarm going off?" I'm guessing that all my "inching" my torso down to the end of the bed caused the bed to move a bit away from the wall each inch of the way. I remember feeling embarrassment and shame and so much regret that I had surely made my condition even worse. I expected that every bone in my hips, legs, knees, ankles, and feet had numerous fractures. I remember crying silently as I was wheeled to xray. I made myself WORSE, more of a burden, needing even more care than I did now!! But by God's grace nothing was broken!! I have no idea if I was covered in back and blue bruises, or if the awkward collapse tore a ligament or tendon, etc, because I could feel nothing. But I cannot express how grateful I was that nothing was broken. A miracle.

Sooooooo, I have developed PTSD. I didn't know I had until 2 counselors told me. I see the counselor provided for free from the breast cancer center, and through our discussions it came out that every time I feel a weakness in my legs, or a nerve shooting up, both of which happen often, those are triggers that bring my brain, my vision back to the dual collapse of both my own legs and the Twin Towers. I always see the Towers when I remember my legs collapsing. Do you know how often I'm forced to relive not only the hideousness of my own fall, but to also relive the Towers collapsing? All the memories of that day in 2001 come back at the same time as the horrible memories of being paralyzed in a place where I was ignored, where I heard "I'm not willing...." so often that it made ME feel badly about myself, and shame, and embarrassment for being a burden. And I'm a person with a strong ego! It's pretty impossible to make me feel bad about myself, but they succeeded. There are so many triggers that set me off to relive these events and horrible, horrible memories and feelings. So, that's it! That was my experience being paralyzed at that hospital. The next day, after my fall, I arrived at a different hospital as much of a "burden" as I was before, but the staff here, where I stayed for 3 weeks, were FABULOUS. It still took 2 people maximum effort to help me do anything. But when a call button was pressed it was answered right away.... by professional, caring, compassionate people who never made me feel badly about anything. And each time I needed to go to the bathroom, the 2 people would put me in a wheelchair, and wheel me the few feet toward the large bathroom in my room, then they would help me out of the wheelchair and onto the toilet. (never a portable commode or bedpan here). All while respecting my privacy. A hallway door would never be open,and the nurses and aides would make a point to look away, or have something to cover me if needed.

My hands were still paralyzed. They had to wiggle my underwear down for me to use the toilet, which is NOT an easy thing to do to a person with paralyzed legs. They had to wipe for me. You get the idea! And they did it all while keeping my privacy, and always being cheerful and happy to see me.

I've babbled on and on, almost nothing related to breast cancer and this forum at all. I guess we could make the case that if you get cancer, you may think "well, this is it. this is the bad health problem I'll have to deal with"...but watch out..... something else, something worse, can still happen. I have learned personally and by hearing other patients' stories and from doctors, that the course of cancer treatment is never predictable. Things will always happen to set back your time line of treatment, or you may have to switch to a different treatment plan, you may have to postpone your own treatment because of a family member's crisis...... it's just always something. Hopefully, everyone else out there with cancer reading this does NOT come down with GBS in the middle of their treatment. Or ever. It's extremely rare, so chances are no one reading this will get it. Unfortunately, it can recur. Things that can trigger a recurrence include surgery, an infection, or injury. Well, I'm definitely having at least one more surgery for my reconstruction. And since folks with GBS can never get a flu shot again, or any vaccine, or even a tetanus shot, chances are that some time in the decades before I die I will get an upper respiratory infection, and certainly injuries because I plan on being as active as I can be, and sometimes, accidents happen during adventurous activities. I'm also more likely to get infections since I have no lymph nodes on my left side. I stress out about the many things that could set off GBS again, and boy, do I fall into a panic. I see blackness all around me and know that I am paralyzed and no one will help me. I hear the voices saying "I'm not willing"..... This is my PTSD, and I am trying to get over it. The doctor I saw today specializes in helping people cope/recover from PTSD.

I'm worn out! And my fingers are still partially paralyzed so all this typing is a real strain. I hit the wrong keys so often it is kind of funny, If I ever didn't try to find all my mistakes and fix them before I submit, all I'd be posting would look like mumbo jumbo.

Best of health and positive thoughts to all.

Susie, I am horrified by your post. It has taken me all day after reading it to respond because it set off a PTSD attack!! It is exactly what I have begun to fear for my future (having never thought of it one iota before). Being helpless in a hospital, ignored, at the mercy of people who are far from qualified to be in the healthcare industry. I can't believe this is widespread....happening at "good" hospitals everywhere. I was thinking it was only at the rare, uncertified "home" where someone with no qualifications takes in seniors and charges them, but ignores them as they rot with bedsores.

I keep hearing the crying and screaming from the other patients in the hospital, being ignored. Oh my goodness. This can't be my future. Until cancer I've always been in excellent health. My other stays in the hospital were due to the birth of my kids or from injuries (not disease). Being an athletic person, and planning to continue to be one until the day I cannot anymore, I presume there could be an injury or two.
Things that can make GBS recur include injuries, surgeries, infections. I'm starting to breathe heavily now and my throat clenches up just typing this. GBS coming back is the same as being in a black pit, totally helpless, crying silently and hearing voices saying "I'm not willing to help".

I am really stunned that this goes on as much as it does apparently. You complained and got your situation taken care of. My situation naturally resolved itself as I was set to be transferred out of hell to the wonderful hospital --HealthSouth-- the following day. By the time I was able to face what had happened to me, and I added 6 pages of "additional comments" to the hospital questionnaire, it was four months later, mid-August of 2017. Since I've sent out my comments I have wanted the hospital to acknowledge that their treatment of paralyzed and severely obese patients is right out of the dark ages. Everyone who knows me considers me "the strongest person they know"...... but 12 days of that gave ME, a post traumatic stress disorder! I arrived at the hospital with one disease, and i left with a new one, one they caused. Are they allowed to give patients other diseases and let them leave the hospital? Like MRSA? Or E. Coli? Or is PTSD a disorder they don't believe is real? Do they want to tell that to a therapy group of PTSD survivors? It sounds like I'm "on a soapbox"....just calling out a rallying cry for outrage just for the sake of hearing my own voice. I could not be more unlike that type of person. This is the PTSD talking!

Geesh, with all this writing and thinking about it, my head is filled with images of what could happen again.... if not from being paralyzed due to GBS coming back, but what about when I get near the end of my life? We'd all like to think we'll be active right up until the end, and then die in our sleep at home, or some variation on that.

But that's really not likely.... especially for someone like me with so very few family members. Husband, 2 sons. One son may end up off the grid again, maybe forever.... The other one is very close to me - now- but who knows if in 30 years he or his wife or kids would want to "take me in"...

You know a huge part of me never wanted to write about GBS on this forum at all, and I did limit much of what my PT and recovery have been like, but I have gone on about it more than I ever thought I would on an unrelated forum. And I BARELY could bring myself to say I had not such a great time in one of the hospitals while being treated for GBS. So now I'm babbling on about my stupid PTSD, while there are women out there with breast cancer. I vow not to bring it up again.

I just wrote a super long post and LOST IT. My fingers often hit the wrong keys and I've had this happen before on this site. I have no idea which finger is hitting what wrong key, buy it is frustrating to have everything I'd written disappear. Someone more knowledgeable with computers probably would know how to get it back, but not me. I don't have it in me to rewrite all the paragraphs I just lost.

Anyway, I'll give it a try in a day or two.

Best of health and positive thoughts to all.

I guess I’m glad i’m not the only one. But I am sorry it happens to you as well. A couple times when I think I’ve lost a post, after hitting some random key, I’m able to find my post-in-progress by scrolling up, but this time it didn’t work . It’s almost midnight here, so I’m not up for trying to rewrite all my paragraphs. I just thought I’d check in for a moment.
I have to say that I am getting more bothered by this pulled muscle or whatever it is that is over my right breast. It seems like I had just a brief moment in the year and a half since I had my mastectomy, where my reconstructed breast looked normal under normal clothing. How long did it last? Maybe only a couple of weeks, I’m not sure, before this muscle jumped out and looks really odd. I see it and it reminds me of cancer, it reminds me of reconstruction. During that lovely short time where they were normal, I felt like a completely normal, cancer free person.
I remember when I first got diagnosed with cancer back in August 2016, and I’d never never known anyone who had had cancer before. By talking to coworkers that I was friendly with, I found a girl, woman, who had just been through a double mastectomy and reconstruction, that I was going to go through, along with the chemo and radiation. And she was telling me about the reconstruction that was still yet to come, and her mastectomy had been two years before. I couldn’t believe how long this cancer process drags out. Two years will be here before you know it, and I won’t be done either, because after this surgery in July, I have to heal for I don’t know how long, before my plastic surgeon will attempt to either reconstruct nipples or do tattoo nipples, that apparently look 3-D.
Surgery, of course brings up my fear that that could trigger the disease I will not name, to come back. So I have this unpleasant part of my brain that is always reminding me that there something really bad that could happen, my getting that disease back.
My long post that was lost was about a couple incidents that happened that had me spiraling into a PTSD meltdown,. It’s cathartic to write about it, so I will do so at a later time. But it’s midnight here now, and I have an early doctor’s appointment with my counselor in the morning.
Best of health and positive thoughts to all.

Post Edited (exqualls) : 4/17/2018 10:05:09 PM (GMT-6)

I understand about the pollen. Same thing here. I thought about you the other day when I heard the newscaster describe the wacky Texas weather.

I still wanted to post about my PTSD episodes, because it helps me to release some of the power it has over me. But I need a bigger chunk of time to write.

Best of health and positive thoughts to all.