Oncologist Visit

I wasn't expecting the oncologist to do much, but boy did they make me nervous! He is a radiation oncologist so he doesn't do much (if anything, I'm not 100% sure though) with patients until they've been diagnoses with cancer ad referred for radiation. I called him because back in 2010 he was such a great help to me. he understood and knew about phyllodes tumors, and was willing to answer all my questions.

So I went to see him on Monday. As I said, I called to find out what I needed to do and the nurse called me back. Anyway, he remembered me and asked if I had the resection done. He had recommended the surgeon go back in and take some more tissue because he didn't agree that they had gotten a wide enough margin. I explained the surgeon refused to do it. He looked a bit angry but hid it fairly well. He then agreed that yes this thing in my back might be a phyllodes but he can't say for sure whether it is or not. I said I understood that but I just wanted to know if I was thinking correctly or if I was just going off half-cocked for nothing.

I understand docs have to be careful what they say to patients, and he was very careful how he worded things. But basically yes it could be a phyllodes, it could also be any number of other things. He said I need to see a neurosurgeon to have it evaluated and that it should be removed and biopsied. So nope I'm not over-reacting, which is nice to know since I am aware that I can do that at time. It is possibly a Phyllodes Tumor, but only way to be sure is biopsy.

Soooooo..time to get a neurosurgeon to see me.

Return Call From Oncologist

I put a call in yesterday (Friday) to the oncologist I saw back in 2010 after the biopsy results came back. I wanted to be sure that I had the right information about Phyllodes tumors and that everything that could be done had been done, so I went to see him even though the surgeon told me it wasn't necessary.

So I called his office leaving a detailed message and asking what tests or things I should be asking my GP about when I see him on Wednesday. The oncologist's nurse called me back a couple hours later after discussing my message with the doctor.  They apparently pulled my medical file and looked it over. The doctor is "concerned that it very well could be a recurrence of Phyllodes" and wants to see me "asap", so I was given an appointment for Monday at 11:00AM (central usa time).

The nurse told me some of the things I already knew regarding chances of recurrence, chances it could be another low-level malignant/benign Phyllodes, chances it could be a more malignant tumor (mid-level or highly malignant metastisising) etc. etc. She said that I was doing the right thing by getting it checked out and said with my history it needs to be done.

So I am now a tad more nervous and scared.

To have a cancer doctor say he is "concerned" and "wants to see you ASAP" is a little unnerving. Though it is still possible this will turn out to not be a phyllodes, so I am holding on to that and doing what the doctor wants me to do.

I am still very very scared.

Scared ..cancer recurrence?

Can I just hide behind the sofa now?

If you read my entry for Tuesday, where I talked about my doctor's appointment on Monday you'll know that when I asked my doctor about the cat scan results he said there was nothing spectacular going on with my spine and that my pelvis/SI joints came back as he expected. Yet again I am glad I do not totally trust my doctors on everything. I trust him to a point, same as he trusts me to a point. But from my experiences I have learned that doctors are very very busy, and as a result miss things, forget past illnesses of their patients, or flat out ignore them.

Yesterday, Wednesday, I received a copy of the cat scan results in the mail as I requested. (which was a pleasant surprise since I was expecting the receptionist to forget her promise to put it in the mail) Reading the report I came across something I hadn't heard of before, intraosseous hemangioma on my first lumbar vertebrae (L1). So I looked it up. Intraosseous means "on or within the bone" and hemangioma means "growth containing endothelial cells and blood vessels". So basically this means I have a growth of some sort (tumor) on my vertebrae at L1. What I read went on to talk about the various tumors an intraosseous hemangioma can turn out to be, many are cancerous (and yes Phyllodes is included) and a few are not.

Now I understand my doctor has hundreds of other patients and as a result it is difficult to remember every little thing their patients have been diagnosed with in the past. But to forget your patient had a rare cancerous tumor removed 18 months ago? Then to not even mention this growth when giving the test results seems wrong to me.

In June of 2010 I had a cancerous tumor called a Phyllodes tumor removed from my right breast. These are very very rare tumors, coounting for less than 1% of all breast cancer diagnoses in the USA. When they do recur as a spreading (metastasis) cancer, they most frequently show up on the lungs or the spine. They are not the usual breast cancer in that they are not ductal or lobal, they are a connective tissue tumor. Also they do not spread via the lymphatic system as most breast cancers do, they spread via blood vessels and contain endothelial cells. Endothelial cells are the cells which make up the lining of blood vessels.

I did inform my pain management doctors of this tumor and its removal because it meant I was having surgery. I did inform them of what little is known about these tumors, including that they do not respond to chemo or radiation and the recurrence rates etc. etc..I did not get additional meds for post surgical pain as my regular meds should have covered it, but I still had to inform them I was getting surgery. They were also informed that a benign/low level malignant Phyllodes tumor counts as a cancer diagnosis and if it recurs it can do so as a more malignant tumor and when they do they usually appear on the lungs or the spine.

Taking that into consideration do you think it might have crossed the doctor's mind that a tumor on my spine MIGHT be something he should mention to me and recommend I have it checked out considering the similarities between a hemangioma and a phyllodes tumor and considering I have already had a rare cancerous tumor removed 18 months ago?

I say HELL YES to that question. Instead I had to find out by demanding my own copy of the written report.

So now I am scared.

I am hoping that it is not a recurrent phyllodes tumor that chose to pop up on my spine because that is pretty scary. I know the chances of survival regarding a recurrent and spreading phyllodes, which this would be a metastisis since it is on my spine not the same breast. I know the chances of it being another low level malginant/benign Phyllodes. None of it is real encouraging or very good. But the only way to find out is to have it removed and biopsied since you can't tell a phyllodes from a non-cancerous tumor without a biopsy. (They very frequently come up with a false negative for cancer result on needle biopsies.) You would think that a doctor would tell their patient, specially one with my history, that an abnormal growth (aka tumor) has appeared on their spine.

I see my primary care doctor to get the ball rolling for a biopsy next Wednesday.

Please please please God, not cancer ok? Or at least, not malignant Phyllodes ok? please? pretty please with sugar on top?

I need prayers and well wishes that this turns out to be nothing, if you wouldn't mind.

Thank you.

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.

Saw The Surgeon

I think this guy got his medical license from a Cracker Jack box or something.

What a most wonderful visit!! (NOT)

He started out wanting to know why I take the medication I take and I told him. He proceeded to tell me they never should have attempted to fuse my SI joint because "everyone's sacrum moves like that" (over 30 degrees of movement, very unstable)

According to him family history does not count in breast cancer, neither does the changes to my breasts, the calcifications noticed in 2006 should have been biopsied (no one mentioned it). No mastectomy because my reasoning for wanting it isn't good enough, and the above statements.

Lumpectomy only on Tuesday the 6th.

Would consider a mastectomy if a genetic test shows I have the gene (even though the gene and family history don't matter re: chances of developing cancer as he said earlier in the visit), and if lump is cancer then they will do a mastectomy.

According to him needle and core biopsies never have a false negative either.

Not a fun visit. Doctors really hate it when a patient comes in with ideas of their own and he is, apparently, one of those.

End result after crying from pure frustration: July 6th, complete lumpectomy to biopsy whole lump (which I requested and he didn't like but followed along on this point at least). That's pretty much it.

Came home, cried, went to bed. Apparently wanting my best chance at preventing breast cancer is not a good enough reason for mastectomy, the American Cancer Society lies to people, and everything I know is wrong. Lovely visit with a doctor *sigh*

So today I called one of the local oncologist centers and spoke with their nurse (the one who answers patient questions and such). After the way the surgeon so adamantly refuted everything I had been told, or read about breast cancer, I was confused and wanted answers. I wanted to be sure that my information was correct just for my peace of mind. So I called an oncologist office, I figure since they are the cancer treatment doctors they would have accurate up to date information regarding cancer. Yes family history does matter. If you have a first line relative (mother or sister) who had breast cancer, it increases your chances of developing BC. For me, my chance is very high because ALL female relatives had BC diagnosis, before menopause, and all died of BC on both biological mother and father's sides. The gene does count in increasing BC chances but apparently there are several additional genes that are being researched as possible contributors as well as the BRCA I and II. Yes enlargement, thickening of tissues (making it harder to diagnose possible spots on mammogram etc.), and calcifications in a person with family history can be "pre-cancerous changes" and/or precursors to cancer. (all of which I have) The nurse I was speaking with called this surgeon an "idiot" and I laughed. She then told me that despite prophylactic mastectomy being my best chance, I probably won't find a surgeon willing to take the chance on doing it until cancer actually shows up. She also recommended having the genetic test done because it would carry more weight with a surgeon and might tip the scales in favor of mastectomy since the surgeons are refuting an extensive family history are "not enough".

My primary care doctor's office called this morning to set an appointment for me to come in and discuss my thyroid test results, so while there (Next Friday the 9th) I will ask them to order the BRCA genetic blood test.

So at least I know that my information is accurate, even if my surgeon doesn't believe it to be. It is nice to know I'm not nuts LOL

All this stress, and today's lovely rainy weather, is driving my pain levels up pretty dang high. So its been a rough couple of days and it doesn't look like its going to get any better for a little while.

(This post will be duplicated on my stitching blog)

Stream Of Consciousness Writing

This entry is a stream of consciousness writing, which means whatever pops into my head will be written down. It may not make much sense, but it is not meant to. This is just to relieve myself. In the past I've done this in written journals when a situation that was causing extreme stress was going on and I found that such writings did help to alleviate some of the stress. What surprised me about it was also finding that doing this occasionally made the whirling thoughts either slow down a bit or stop completely. These are the thoughts that are running through my mind since I was told the lump in my breast was not a cyst or infection and a biopsy would be needed. Having lived with this time bomb waiting to go off inside me (due to family history of breast cancer) I did not expect to be this upset, after all I knew this would happen sooner or later (and probably sooner than later). Despite this my reaction has been intense, very emotional, and very convoluted which surprised me. So I'm going to try this here to see if it helps. (Family history: every female on both biological mother and father's sides died of breast cancer, all before age 50. my mother at 44 [I think] and her mother at 31. none survived 5 years from diagnosis) So here it goes...

OMGOMGOMGOMGOMG a lump..shit..fuck..its cancer..I know it, its cancer..it has to be. omg omg omg omg I can't deal with this..my kids, what about my kids? my son..he's just 14, too young to lose his mother. no I won't die, I can beat this. but no one in my family has ever beat it, none lived longer than 5 years from diagnosis. shit shit shit fuck fuck fuck NO think positive, its just fibroid growth, think positive think positive. can't oh god oh god please, please just fibroid please god ok? please? my niece, she's 2, sees me almost like a mom to her, this will devestate her and sam, oh my god sam..my baby girl..sam..ohshit..this will kill her she's already very stressed...god please just a fibroid come on god give me a break please. what the hell am I going to do? calm down missy calm down, you can handle this..no no I can't ..can't I just run away? run away from it and hide somewhere? I am so fucking scared. why am I so scared? I've known for many years that this would eventually happen. god that pissed me off when marty said that on Monday "you knew this was a possibility" like that made it any better..know he didn't mean it negatively but shit that hurt and pissed me off, like I wasn't supposed to be upset, like it is no big deal, like I shouldn't be scared, worried or anything....but he's right, I have been expecting this for years, I knew this would happen eventually I knew breast cancer (for me anyway) wasn't an "if" it was a "when" and apparently "when" turned out to be at age 41..I should be stronger than this..so scared, so fucking scared...want to hit someone..so fucking scared and hurt and that always makes me angry..don't want to be angry, it doesn't help god please, please god don't let it be cancer, please god give me a second chance..I thought I would be able to handle this better but I can't, I'm failing Ron, my kids, my friends because I'm falling apart. They all expect me to be so strong, so capable..able to face anything and just deal with it..but I can't. so fucking terrified..so small...so weak and useless..so fucking broken...so scared..vulnerable.. Ron! this is going to devestate Ron, ohmygod I never wanted to hurt Ron and I know this is hurting him..he's so clingy now..he's not sleeping well..so upset..so scared..I can see it in his eyes..never wanted to hurt or worry him like this..ohgod I'm failing him, failing myself, failing everyone..please make this go away, please please please...Ron, ohgod I need Ron..I love him so much and I know after his mother's death from cancer this will be flashbacks for him. he told me years ago that he didn't know if he could go through cancer treatment for someone he loves again. he's already had a heart attack..what if the stress of this causes another? oh god please no. please please please give Ron the strength to deal with this..please don't let him die or have a heart attack. ohgod I can't believe this..why now? isn't a lifetime of massive pain enough? Isn't knowing that the pain will just get worse every year, eventually needing a wheelchair and probably ending up in some shitty nursing home unable to care for myself due to pain enough punishment for whatever I have done that was so fucking wrong? what the hell was I in a past life, Adolf Hitler or something? what did I do wrong to deserve chronic pain and now breast cancer? think positive missy, think positive it could still be a fibroadenoma, it may not be cancer. you have to think positively. yeah right, come on you idiot you know its cancer..you had pre-cancerous changes back in 2006 and after those type of changes a cancer diagnosis often follows within 5 years and this is the 4th year. the damn thing is 2.4cm long almost an inch and wasn't there 2 weeks ago. it grew fast..does that mean it is a very aggressive cancer? ohman please no. so scared..so tired..can't do this I just can't. this is horrible so horrible. I hate not knowing..why isn't there a simple blood test to detect breast cancer so people don't have to wait days or weeks and drive themselves insane? I don't even know when the biopsy will be done. why didn't I get the mastectomy in 2006? why didn't I push for a second opinion? why was I so stupid as to believe that surgeon that there were no other surgeons that do mastectomies in my town? stupid stupid stupid bitch. I should have done more, I should have been willing to go to pensacola or tallahassee or anywhere else to get a second opinion. I shouldn't have just let it go. I should have done the stupid genetic test he wanted despite the difficulties of life insurance and all that shit, just to get the mastectomy and lower my very high risk for breast cancer. stupid of me so damn stupid. why did I just let it go? why didn't I push harder? oh god this is horrible. breathe missy breathe..it will be okay, stop freaking out...<breath > <breath> <breath> <close eyes and breathe for a minute or two>

tumor..solid palpable mass..biopsy necessary. shit shit shit so fucking scared. will the surgeon do the mastectomy..it is my best chance at beating it if it is already cancer or preventing cancer if its not cancer yet. but will he do it? God please, make the surgeon do the mastectomy, please god please please please..give me a chance here, for my kids' sakes..please don't make my kids go through losing their mother...please don't make Ron have to relive the worst time of his life..please god. chemotherapy, throwing up ohman I hate throwing up..losing my hair and being bald ohman ohman ..I can do this..I'm strong..I've come through a lot in my life..abuse..sam's abuse and her intense long struggle with ptsd, severe depression, d.i.d all of it..divorces..crap with my so-called family..this should be easier..but its not..its not any easier..this is so fucking hard..this is more terrifying than going homeless with an infant relying on me..ohgod pleasepleasepleaseplease make this go away..please can we do the last 10 days over again ..no lump no nothing..I swear I'll demand the mastectomy I should have gotten in 2006..please god make this go away. come on missy stop being a blubbering baby..just stop this doesn't help anything going round and round like this..STOP IT..I can't..I wish I could because this is so stressful..I keep crying in the bathroom so no one hears me, so I don't upset anyone or make them any more scared than they already are..Kyle's statement when I got home after the mammo.."you're going to die?!?" keeps going through my head..the fear on his face..ohgod I can't do this to my baby..I can't promise him I will live because I might not and then he'll be even more pissed that I lied to him in addition to so hurt and angry that I died..shit shit shit shit..this is just horrible. <deep breath> OK enough of this shit..I'm going to go stitch something and force my brain to stop this round and round..tumor..cancer..its cancer, I know it is..my instincts are screaming that it is..what if its not instincts and just fear..I've been scared before but never like this. now I know what goes through a person's mind after they hear they need a biopsy..this is something I think I could have lived without knowing..I don't like feeling this way..my body has betrayed me again..hell after my back and pelvis I should be used to it, but I'm not. I should have been able to handle this much better, but I can't. I can't handle this with the calm I thought I would. I'm not strong like everyone thinks I am. I'm weak, vulnerable, terrified and small. ENOUGH MISSY! ENOUGH! STOP IT! GO STITCH OR CLEAN OR ANYTHING STOP JUST SITTING HERE DRIVING YOURSELF NUTS IT DOESN"T HELP. GO!

-----

And that is how I finished "Frogging Around" the other day. This crap is still going through my mind off and on today and I've taken 3 naps so far to escape from it. I've done laundry to escape from it. My back is killing me so I can't do housework and vent the nervous energy that fills me. I don't know what to stitch now, I can't make up my mind. I feel like I am alternating between spinning in circles and being lost alone in the dark. This sucks.

I am trying so hard to be strong, to be there for my family and friends so they don't get more scared when all I want to do is run away or hide. I feel myself closing in on myself and withdrawing from others, curling up to lick my wounds. I know it is okay to do that when one needs to, so long as it doesn't last for too long, but I am not sure I can pull myself out of it. This really does suck.

I'm not sure typing that stream of consciousness helped or not, I will probably have to keep doing it until Monday when I find out whether the doctor will do the mastectomy or not. I am really hoping that he will, that he will realize it is the best option regardless of the biopsy results. His nurse called to remind me of my appointment on Monday and blew my mind. She asked me if I was okay and handling this okay, then listened to me babble for 15 minutes. She did not interupt me or tell me she had other things to do. She just listened and told me she understood and that it is okay to be scared. She assured me that Dr. Wong would listen to me and help me make the best decision and he is looking forward to seeing and helping me. She told him everything I had said when I called on Wednesday afternoon. This surprised me but also made me feel better. Is it possible that I really have found a doctor who is a doctor because he cares about people? I hope so because it will make this all a lot easier I think.

Ok I am going to work on Christmas Dreams I think, it is the wip I have that is closest to being finished. I am sorry if this post upsets anyone. Please realize that this was not my intention, I just needed to get it out of my head. I do feel a bit calmer, so that is good :)