Pain, Stress and Hope

I've been doing a lot of reading about my diagnosis. What I have been finding is not very encouraging though. A benign Phyllodes Tumor (aka philloides tumor), when it recurs, is usually malignant. There is a study going on in New Hampshire that is showing radiation to have some positive effect on these tumors, so there are treatment options. However the best treatment still appears to be complete surgical removal, preferably with a clear margin of healthy tissue. Everything I have read agrees that even a benign phyllodes counts as a positive cancer diagnosis. So now I am doing daily breast self exams because I want to catch any new growth as quickly as possible.

I have an appointment to see an oncologist on August 4th, one who was trained at the M.D. Anderson hospital in Houston TX. Since I had already been recommended for a prophylactic mastectomy but couldn't find a surgeon willing to do it. I want to see what the oncologist has to say. My hope is that he will agree a mastectomy is necessary now that I have a cancer diagnosis and he will know a surgeon willing to do the surgery. Removal of the breasts is my best chance at not growing another tumor, this one malignant.

My primary care doctor is putting in prior approval paperwork for the genetic test (BRCA I and II genes), but test results still takes 6 to 8 weeks or longer. I am hoping that if the oncologist agrees we can get the mastectomy done before that. Though I seriously doubt it will happen.

Dr. Idiot, the surgeon who did the lumpectomy, told me that if I had cancer he would do a mastectomy. Despite phyllodes tumors counting as a cancer diagnosis, he still won't do the surgery. He still wants the damn genetic test. This just ticks me off. With my family history and now this tumor, it should be enough for him to believe that a mastectomy is the right choice.

My back still isn't back to normal since the surgery last week. My lower back still has much higher pain than it usually does and the SI joint is also very unhappy. I will probably spend today in bed again trying to get both back to my normal by resting them completely. There really isn't anything else I can do.

Ron has been truly wonderful through all of this. He has stood by me every step of the way. He also spent the afternoon and evening reading about these tumors after we got the diagnosis. Like me, he wanted to know everything he could about them and what treatments, if any, would be best for it. He is behind me on wanting the mastectomy. I have been so grateful for his love and support through all this. It is wonderful to have a partner who believes in and will love up to the vows he took when we got married.

Ron, thank you for everything! I love you!

Biopsy Results

The biopsy results are a good and bad kind of thing.

Good news first: BENIGN (not cancer yet) 

I do not have cancer yet, but it was a tumor called Phyllodes Tumor. This is a rare tumor (counts for less than 1% of all breast cancer diagnosis). It is a connective tissue tumor rather than the more common ductal or lobal tumors. It is very aggressive (it grew 3cm in 9 days..2.4 at ultrasound..5.4 when removed 9 days or so later, it weighed 25grams), does not respond well to chemo or radiation. It counts as a positive breast cancer diagnosis even if the tumor is benign at the time it is found. Unlike other breast cancers it is not classed by stages (example stage 1-4), it is classified as benign, borderline, or malignant (cancer) based on the number of irregularly shaped cells in the tumor and how fast cell division is occurring.

I am glad that I insisted on a full lumpectomy for this biopsy because these tumors ALWAYS give a false negative (remember Dr Idiot said false negatives never happen?!?! IDIOT) on a needle biopsy, in fact they usually come back with a misdiagnosis of fibroadenoma (very benign type growth). Had I followed the surgeon's idea of a needle biopsy, I would have been misdiagnosed. They are also very hard to diagnose by mammogram, ultrasound and MRI due to the fact that they look very similar to fibroadenoma. Though an MRI can give the best view of the tumor and thus be helpful in planning surgical removal. Surgical removal is the usual choice for treatment of these tumors, sometimes requiring full mastectomy.

Next step will be genetic test (Dr. Idiot said if I come up with one of the genes, he will do the mastectomy I asked for) and bilateral mastectomy as this is the best way to prevent a new tumor (which will be cancerous) from growing (the less breast tissue I have, the lower my chances of growing a second tumor (this one cancerous) of this type.

You can find out more here:
http://breastcancer.about.com/od/types/p/phyllodes_sa.htm"

http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-what-is-breast-cancer"


Due to the type of tumor I will be seeing a couple different surgeons in the hopes that one of them will do the mastectomy without the genetic test, though I plan on getting blood drawn for the test in case all the surgeons I see demand the test.

Leave it to me to get a rare type of tumor that is difficult to treat and difficult to diagnose.

Scared, Antsy, and No Sleep

It is 8:17AM here (US Central Time) and I have been awake all night. I tried to sleep a few different times but I kept dreaming about the idiot surgeon telling me I had cancer. I understand why that is showing up in my dreams. Today (this morning in fact) is the day I get the biopsy results from the surgeon. Despite trying not to get my hopes up too high for a benign result, I know my hopes are sky high and if the results are malignant I am going to be crushed. I slept a total of less than1 hour (20 minutes, separated by 4 hours in between).

I've been through a lot in my life. Neglect, emotional and physical abuse as a child and an adult, sexual abuse, rape, bouts of severe depression, injuries to my back resulting in severe chronic pain. I should be able to handle this without feeling like I am coming unglued shouldn't I? I am trying so hard to keep it together and not lose it, mostly for my son's sake. He doesn't read this blog so I can vent it all here. Though my daughter does read it and I don't want to upset her either. But she understands about venting a lot better than he does as she is older and has her venting moments too. People expect me to be strong, to keep it together and not lose it, but I think on this issue I'm going to and I pray they understand.

I am so flipping scared! I just want to find a small, dark place, crawl inside, curl up and hide. I don't want to face this. I want to forget it ever happened and ignore it. I'm sitting here typing and watching my husband stand up, pace a bit, sit back down and try to concentrate on his game only to stand up and pace a bit. He's been doing that for the last 15 minutes. I can see his worry and fear in his eyes. But I can also see his love for me and his determination to be there for me every step of the way, no matter what the diagnosis is and that just amazes me. I am counting on it too. I know him. He will keep his word. He has been here for me every moment of the past 13 years (since we've known each other), even when we did not live together if I needed him, he was just a phone call away. If I needed him to be there, he would get in his car and come to me (an 8 hour drive I think it was). It is a lot nicer to have him right here in the same house as me and boy do I need him this time.

I cried last night. I tried watching a movie to distract myself. I did pretty good distracting myself most of the day, but as the house quieted down (a friend went home and Bridgette went to bed) I had a harder time of it. So I put in a movie we got from Netflix called "Lovely Bones". It is based on a book that I really loved. However, last night was not a good night to watch such a sad and emotional movie. I made it through the first 25 minutes or so then started bawling. I turned the movie off, went into the bathroom and cried. I pulled myself together and decided to go to bed and read. Ron (DH) said he could see by the way I sat on the bed for a minute before laying down that something was wrong so came over and hugged me. As soon as his arms went around me I just started crying. I couldn't help it, but it is ok because I know he doesn't see my crying as a weakness or an attempt to manipulate him. I do not cry very easily but I did last night. In Ron's arms I am safe and it is safe for me to let go because he will hold me up and be there for me in those vulnerable times. I can't begin to tell you how wonderful that is and how great it feels to know beyond a shadow of a doubt that he will not harm me in any way for having times when I need to cry.

I know I am rambling but this is all I want to do right now, just ramble and vent while I wait for the time to go to the doctor's office. My appointment is at 9AM, the office is less than 5 minutes from my house, and it is now 8:35AM. My mind is whirring, my heart is pounding, and I can't concentrate to read or stitch or anything so I'm doing what I used to do when I had such emotional worrisome moments before; write it all out.

I know this is going to sound stupid but part of me wants to hear the doctor say it is malignant, just so I can look him in the face and tell him he is an idiot and that I hope he learned something from this. That I hope he learned that not all his patients are unintelligent idiots, and that he should LISTEN to his patients more often. I also want to tell him that he needs to go back to medical school and retake the courses where they cover cancer, specifically breast cancer because the information he is giving his patients (the information he gave me) is WRONG WRONG WRONG!

I wish this was over. The only other times I have felt this worried, this scared, vulnerable, tiny, terrified etc etc were when I was giving birth to my children and those occasions when my children had to go into the hospital for one reason or another. The times I had to be on suicide watch for my daughter, hide all the sharp items in the house where she couldn't get to them, a constant litany of "please God help her. Please God Please God Please God" running through my head. The time my son had pneumonia (both lungs) and an asthma attack, his oxygen saturation in his blood was in the 70s, as soon as they got that reading the nurse ripped him out of my arms and literally took off running with him into the actual ER treatment rooms (we had been in the triage/check-in area). For a second I was stunned and could only watch as this woman took off with my baby (he was a year or so old) before it dawned on me that I need to follow her and I took off after her. The same litany of please god please god going through my head.

It is time to go. please God, let him say benign.

please

Surgery Is Done

The surgery is over. I'm sorry I did not update sooner but I've been in the middle of a pain crisis and spent Tuesday and Wednesday in bed. Tuesday was because of after-affects of the surgery and Wednesday & Thursday was because I was in a LOT of pain.

For those who do not understand what a lumpectomy is I will explain. It simply means the removal of the entire lump and possibly some surrounding tissue. This way they have the entire lump to biopsy. I wanted this method of biopsy because I did not want to take the chance of getting a false negative which can occur with a needle or core biopsy (they are RARE [false negatives]).

The nurses and anesthesia people were all wonderful and supportive. One gentleman held my hand and talked softly to me while I fell asleep. I was deeply touched by them saying a prayer that the lump turns out to be benign (non-cancerous), it was really sweet. I was a tad annoyed that the surgeon did not speak to me at all except for saying hello when we passed each other in the hallway (he going to speak with another family and me going to give a urine sample). Every other surgery I have had, the doctor has always come to me while I was in pre-op being prepped to talk to me, answer any questions, and tell me what to expect. He was also very quick when speaking to my husband when the surgery was over and I was in recovery. Ron said he talked quickly and left quickly just saying "the surgery went well and she's in recovery". No time for questions or anything else. I really dislike doctors who act this way. It is like they forget we are people and see us as nothing more than an object or something.

If it turns out to be cancer, I will not be letting this surgeon handle the mastectomy. I would much rather have a surgeon that cares dealing with me for such an emotional operation. It is a big deal for a woman to lose her breasts and I don't want some guy who is in a rush and can't talk to his patients being the one to remove mine.

I now have a 3 inches (or so, didn't actually measure it) cut on my right breast that is held together with super glue. It is tender and sore but not too bad. I CAN stitch, which was really nice! My return appointment with the surgeon is on the 14th but he did say the results may be in Friday the 9th, or Monday the 12th, so I will be calling the office to see if the results are in and they'll give them to me over the phone. I seriously doubt they'll give them to me over the phone, but I figure it can't hurt to ask.

As to the pain crisis, I think it was caused by the surgical bed/table I was on and the hospital gurneys. None of them were comfortable and I had to lay flat on my back, which is painful to me anyway, for a few hours. I was out for about 2 hours. The table/bed thing (not sure what they call it) in the surgery suite was not very wide and they strapped my legs down out straight which really hurt. When I woke up in the recovery area there was a pillow under my knees but I don't know how long it was there. So I got 2 days stuck in bed due to pain, but I did manage to do some stitching yesterday, which was nice. Mostly I slept off and on, a few hours here, a few hours there and read or stitched when I was awake.

I woke up at 11:45PM Thursday night so now I am awake. Most likely I will not be able to go back to sleep and will have to try and make it through all of today (Friday) without a nap, specially since I have a 1PM doctor's appointment to discuss my thyroid blood test results. Yay fun ..not. LOL

Well that's it for me. I'm going to try to finish catching up on blog reading as I have 282 posts in Google Reader.

Rain, Rain, Rain

It has been raining almost every day for the past three weeks here. Rain always makes my pain go up, most likely due to pressure changes in the air. So I've been hurting but dealing with it for the most part. I have felt rather odd for the last week, in limbo, just waiting for the next thing. I can't focus on anything and just feel antsy. I know why, it is because I am waiting for the lumpectomy surgery (tomorrow) and the biopsy results to follow. Since I don't know for sure what the lump in my breast is, I am left unsure of what to do next or what to expect. I really hate this part of any medical diagnosis, the waiting for results part. Once I know what is going on, I can figure out what to do next, research the diagnosis, learn as much as possible and start moving forward. But during the time period where I don't have a diagnosis, all I can do is wait and feel antsy and a bit lost. It sucks because I can't focus on anything, not stitching, reading, or anything else. I start and in a few minutes I get up and try to find something else to do. Oh well. Tomorrow is a step forward. I have to be at the hospital at 11:40AM and should be sent home around 6:00PM or so. Then comes another week of waiting for the biopsy results while letting my breast heal. Ohman that will be a hard week!

That's all that has been going on for me this week. Just...waiting.