I am concerned, & yet they put me off?

[Chelee]

I am stage IIIA, Her2/Neu, 3+++, Er & Pr positive, 5 of 16 nodes positive. I did not get along with first oncologist and I am now with one I like very much. But that being said...both aren't concerned about other health issues of mine that have showed up since all the CAT scans, Pet/CT scan, MRI, etc. I think they NEED to be addressed and I am worried about it.

My MRI back on 1-25-06 did CLEAR me for brain mets. (Thank goodness!) But it did mention "small vessel ischemia". It also said differential would include migraine headache, vasculitis, or demyelinating disease. I asked BOTH oncologist shouldn't I see a Neurologist about this report? They both said for me NOT to worry about this right now and lets just focus on my treatment. I could NOT help but ask both of them.....I won't have a treatment plan if I am DEAD. I asked them both....doesn't ischemia, and vasculitis refer problems that can cause a stroke or worse yet? They both said yes. But we need NO inturruptions in my treatment. I said really nicely...we will have a big inturruption if I have a stroke or worse. Long story...because I even asked them about the "Vasculitis" and " Demyelinating disease". They anwered my question...but blew it off. Why CAN'T I see a doctor between my chemo visits to see what all this is? I don't understand why they don't want me to follow up on this? (Do they know something I don't...like I am going to die anyway...so who cares?) I am getting so scared since they both are doing me the same way.

Plus...my PET/CT scan back on 1-25-05 also showed a mass down below where my ovary is. I was sent for a sonogram....and they sonogram lady for the life of her tried her hardest and could NOT find my right ovary? She did find a big 4 cm mass though that is there! ARGH!!! I asked my first oncologist about it....and he said he is NOT worried about it. (Sure he is NOT...he isn't worried about me at all...that is why I changed doctors!) But I brought this 4cm mass on my ovary to my new oncologist...and she too said its probably just a cyst or something...and for me to not to worry about it. I said since I had a stage IIIA breast cancer and positive lymph nodes...I AM WORRIED. How do I know its NOT cancer down there too. She said its probably just a cyct and they are common. (Yeah...but WHAT if it ISN'T and its spreading every where...and maybe that is WHY my hips lite up on the PET/CT scan!) But they say not to worry! RIGHT!

She said you can follow up on that when you get through your chemo because we don't want any inturrutions.

What would you people think of this? Plus I have asked to see MY PET/CT scan I don't know HOW many times and they always say I can...but it never happens. They did say one spot on my right hip lite up..but again...they weren't worried about it...that it was probably from my scoliosis. I am starting to feel like they are lying to me...that they know more then they are saying? Am I just paranoid or what?

Plus I had a CAT scan because I was worried about these two PUFFY places on each side of my neck. (Hard to explain?) Not hard spots...but they puff up on both sides. They took CAT scans of this area and I JUST now asked them for the report. (Before...they said it showed NOTHING.) Well I just read it and it says " There is slight increased activity in the lymph node in the right neck on the PET scan of 1-25-06 is of questionable significance".

Ok...again...why did they keep that from me too!!!!!! What do they REALLY know about me that they aren't tell me. Am I a lost cause. That was FOUR months AGO and they CHOOSE NOT to tell me what the report said. Darn them!
I am so depressed. Sorry people. I just don't know why they aren't addressing what seems like very important matters. I am fighting for my life while they just put all this other stuff off like its nothing when we have NO why of knowing. Those TWO big puffy places on my neck are so big now since Jan. that its not even funny.

What would you guys think? Its like...since I have stage IIIA cancer that is Her2/Neu 3+++, Er & Pr positive, 5 or 16 positive nodes, richardson score 9 of 9. That why bother doing anything else for me because I won't be here long in their opinion. I feel SO DOWN today.

To IGNIORE the lymph nodes on neck, and 4cm mass on right ovary, and MRI showing PROBLEMS that can can cause me stroke or heart attack seems pretty important to me. But they say I can take care of it later.

[saleboat]

Dear Chelee--

It sounds as though you do not have a lot of confidence in your medical team-- your Doctors have spent years and years in school, plus passed rigorous medical boards in order to take patients such as yourself in their care. While they may not be giving you the answers that you like, they are not giving up on you. I don't think that they are lying to you when they tell you that your ovarian cysts are not an urgent issue.

I too had three fibroids (two the size of grapefruits-- yikes!), plus ovarian cysts all during treatment-- and I was Stage IIIC-- so allegedly a worse prognosis than you. But I have never felt like the doctors were giving up on me-- they were focused on the biggest threat to my health-- breast cancer-- and doing the best that they could to give me the best treatment they knew-- which did not have room for interruptions.

Chelee, the odds are on your side! I certainly understand how difficult it can be to digest one's crappola pathology report. There are no promises, but a lot of hope. Living with the uncertainty is one of the most difficult parts of this disease.

I hope you can find a way to build a trusting relationship with your medical team-- either by switching hospitals, or having a frank conversation with your Onc. It hasn't been easy for me to trust these doctors-- I supposedly go to one of the best hospitals in the world for cancer treatment, and I still scour the internet to be sure they're not missing anything. But the more I learn, the more I realize that I'm totally out of my depth.

I hope you can find some peace with your Oncologist and treatment plan.

Good luck,
Jen

[Becky]

Maybe you should work on one thing at a time and prioritize them. In my mind, your onc needs to deal with the node puffiness first and rule out what's going on there first. Insist on that. The next thing is the ovarian cyst. Go to your gyno and get more tests done on that - or a new gyno if you must.


Lastly is the neurologist (since cancer is the higher priority right now and you do have to finish your treatments). Go to a neurologist yourself and find out what to do. You may have to put it off until the chemo is done, but you can make a plan and maybe get a second opinion too.

My mri was clean but showed artherosclerosis of the small vessels - so... remember when you get a test to rule out cancer, you can find something else. i did go to a doctor who told me that my PCP needs to ensure my blood pressure and cholestrol stay in check. But he also told me that the amt of artherosclerosis was typical and normal for a woman my age (whew).

Break things down into little pieces and deal with each piece one by one. It won't be so overwhelming that way.

Hope this helps.

Kind regards


Becky

[Patricia]

Hi Chelee,

I am so sorry to hear that you have a lot of things that are stressing you out right now. You just don't need that at all. I noticed on your name tag that you are also in CA. I am located in SF and have a wonderful oncologist that I would be happy to refer to you. I have had a few things going on as well and have found him and his entire staff to be incredibly attentive and honest each step of the way. Let me know if you are up north and I would be happy to send you his info.

Warm regards,
Patricia

[AlaskaAngel]

It does take a while to get "over it" when you start out with a medical provider that has failed you. Most providers are not like that, but it still takes a while.

Breast cancer and treatment are complicated enough that it is hard to know what is important and what isn't, and what to trust and what not to.

You're asking good questions, even if it turns out your medical providers are right.

I'd follow Becky's suggestions.

AlaskaAngel

[lu ann]

Hi Chelee,

I had a transit eschemic attack (T.I.A.) the first time I had breast cancer (dx. 09/26/91). It happended during the 5th round of chemo. I was on cytoxin, methotrexate, and 5fu on day 1, methotrexate and 5 fu on day 8, with 3 weeks off, then repeat the cycle. I received 6 cycles of this treatment.

My chemo. was to fall on my 8 year olds Birthday so I asked my onc. if I could go 2 weeks instead of 3 weeks before the next cycle. She gave me the go ahead as my counts always looked good.

My daughters b'day is Mar 19 and my b'day is March 22, which is the day I had the attack. It was very bazzar. Mr husband and I had just gone to bed when I felt his arm hitting me in the face. I kept throwing it back on him before I realized it was my own arm I was throwing. He turned on the light and saw that my eyes were crossed and I was speaking in garbled sentences. He probably should have taken me to the emergency room but we waited to see the oncologist the next day.

She ordered a CT scan, which was inconclusive so I had an MRI with the same outcome. I was sent to a neurologist who ordered an arteriogram. My heart function was fine but I had scarring on my brain. I found out later that one of the chemo drugs I was on could cause blood clots.

I did not find out that the radiologist suspected brain metastasis until the middle of May. Another MRI was ordered. I asked the oncologist what the prognosis was if I had brain mets. She replied 2 years with whole brain radiation. I was totally freaked out. My children were 8, 5, and 1 year old.

The second MRI was normal. Everything had healed. I felt God's presence while I was in the MRI. I knew everything was going to be alright.

I continued to go on this rollercoaster ride of having abnormal mamograms, followed up with abnormal ultra-sounds. My surgeon suggested I have a profilactic mastectomy on my other breast. I got a second opinion from a doc. who suggested biopsy. The mass was benign.

Through the years I continued to have other health issues which include skin cancer (basil cell removed in office), cervical displasia (conization done in office), d+c dx. hyperplasia (total hysterectomy). I also had several episodes with kidney stones. Again they had to rule out renal cancer so more and more tests. Then the radiologist saw something on my sacrum which turned out to be blood vessels. You would think that with all the scanning and testing they did we would have found the reccurence of my bone mets sooner. They just didn't look in the right places and I didn't complain.

I feared going to doctors. I felt that they were just using me because I had good insurance. Meanwhile I ignored symptoms. I allowed fear to cripple me.

It has taken me a good part of the last 2 years since my recurrance to reach a calmness when dealing with this disease. I don't freak out and have to know right now what the results are from tests. I've had the last 5 months off chemo because my CT scan in Feb. showed stable disease. I had my follow-up CT scan April 24, and I see my oncologist May 5th. I really havn't given the results too much thought.

I do cry and I get scarred. But I pray and ask God to take the fear away from me and He does.

I probably have gotten way off track of what you asked from us, but I sense you are giving this disease too much power over you. You need to take charge and be comfortable with your medical providers.

I am on my 4th oncologist and 4th medical center. I went back to my origional onc. when I was dx. with the recurrance. I wasn't satisfied with the way she treated me. I went to 'Cancer Treatment Centers of America' to seek a second opinion. I received rad. tx. from there but returned home to yet another onc. who I stayed with for one year. I left on good terms and asked Him if He would be my doc if I should need hospice. He said He would welcome me back and agreed with my going to University Hosptals of Cleveland, where I could be involved in clinical trials.

Ask your current onc. for a referral to a neurologist. If they keep giving you the run-around seek another opinion. There is no reason you should feel this way. We need to trust our gut instinct and we definately need to trust our medical providers.

Love and Blessings,
Lu Ann

[kristen]

Hi Chelee,

I like your name, or user name. I don't think I can give you any better advice then what the other ladeis did, I just wanted to tell you of my experience with neurologists.
I was under the care of a neuro, when dx'd. So getting MRI every 6 months was a breeze. But when you sit down and talk to a general neuro, they don't know much about cancer. I think once you get dx'd. the onc. wants complete control over you and your medical attention so they don't want you going to outside sources unless they order it. When I asked my nuero about brain mets she told me all I remember from med school with BC is lung, bone, liver and brain. Therefore I got my MRI's. She is very pro in getting patients in to have them tested, unlike other mets, she feels that the earlier you catch brain mets the more options you have to fight. I know this is off the subject of what you asked, but what I am trying to get to, is they are right and that the BC is your top priority, but I would probably consult with a neuro anyway just so you have one that knows your history and can keep an eye on you.
Becky and I both had cysts on our ovaries and can tell you they are not pleasant. 2 things you can have done. Ask you onc to order a ultrasound or your ob to keep an eye on them and you can ask to have a CA-125 run, they are incredibly unrelialbe, so if you get a postitive, I would have them rerun it again before any surgical or other measures are taken, but remember your getting chemo, so even if you have some cancer in your ovaries, hopefully the chemo is effecting them too? Something to ask your ob. There are always options. You are not being unreasonable, just proactive and that is something this board taught me. If your onc, won't do what you ask them to, me personally, I changed oncs once and then just made my own apts with the docs in there perspective fields so they could keep an eye on me. I don't think they can do much while on chemo, but at least they will have your history because in fact when your done with chemo, your onc will send you to these other doctors anyway. Mind did. Chelee have you done research on how many BC's actually met to the ovaries? I don't think many if at all. Could it be OVCA, I don't know, I have never heard of the two together but that doesn't mean it doesn't happen, that is why I suggested the u/s or TM. Could the chemo your on, help out with the swelling in your neck? Something maybe to ask your PA or onc? Way to keep asking questions and staying informed. .

And Chelee, it is so tough right now the place your in. This is just the begining of a long haul and it does get easier. You don't have to get your reports from your doctors. Go to the hospital or center where you had them done, feel out a release sheet and they have to give them to you. Good luck and my best to you.

[Chelee]

You guys have it right when you can see through my words that I have lost trust in my tx team. Its such a long story so I won't bore you...but being NEW to all this...I now know beyond a shadow of a doubt...my first oncologist knew my prognosis was poor and was to save money on my care. (No one has to believe it...but I do!) He knew for three weeks my wbc was in the dirt and would land me in the hospital. (I didn't know anything about my counts...other then he kept saying they were really low.) Again...long story...but he almost killed me! He made me suffer a week of not being able to breath & other problems before a ambulance had to take me away.

He was not giving me that "standard of care" as you call it. But its been five months now & I have picked up and learned alot more about us Her2/Neu women. I have found out...at least here where I live....that the women with a better prognosis...meaning no positive nodes...and early stage are getting better care quicker. People like me, stage IIIA, Her2/Neu 3+++, Er & Pr Positive, 5 of 1 positive nodes...and you name it...they don't want to spend the money UNLESS you are really proactive and push for everything. I got NOTHING till I finally came to this board and one other and started reading and learning for myself. That's how I found out I was SUPPOSE to be having Neulasta after my chemo's of Herceptin, Taxotere, & Carbpotin. My wbc was down to 116 and my oncologist NEVER once even mentioned Neulasta to me. I knew nothing about it. He choose to let me go another round of chemo and put me in serious condition. So I am rather frustrating with all this.

Since I changed oncologist...and have become proactive in my care...she seems to get me everything now. (But I should of never had to went through what I did to even get the care I am now.)

I blame lots of this on the HMO's...but thats justs my opinion. Had any of them been honest with me from day one...I wouldn't questioned what they tell me. But I just got some of my reports from their offices and they have held back important information...then when I question them about it...they make up excuses.

For instances...one report from a CAT scan I had while I was layed up in the hospital says I have an enlarged heart. (This was NEWS to me.) I thought maybe the herceptin? So I asked my oncologist and she said you can't tell those things from a CAT scan. (Then WHY was in in the report??!!) She said they just write things like that. (Say what!!!)

Then I mentioned those TWO puffy places I have on EACH SIDE of my neck right at my collar bone. One one each side. They are BIG! I finally got a chance to ask my new oncologist why those were there and getting bigger? She said for me NOT to worry...those puffy spots where the lymph nodes are...are just full of fluid from the steroids. (Decadron) Come on...I only use Decadron three days each MONTH. Not daily. I am worried its cancer and thats why its getting bigger. Makes me think my chemo is not working and she just doesn't want to say. She said those puffy places are big...but they would be HARD to touch. She said its very normal.

So do ANY of you women have these puffy places on the sides of your neck? Mine are big. Plus I forgot to tell her the one on the right side was there BEFORE I even had my surgery...meaning BEFORE I ever had any steroids. Which I will tell her next time I get to talk to her.

I know your suppose to watch for big swollew places around your collar bone. So why are they telling me to not worry. I have asked to see my combo PET/CT SCAN several times and they always say I can...but it never happens. I feel like they are hiding alot from me.

I have to fight for everything it seems or I won't get it so they can save money...not me. :( Now if I ask...I get it...but what damage has been done by ALL the delays and down times they have caused me. Gee...I am just now getting Neulasta, Procrit, and IV iron infusions that I knew nothing about.

But you guys are right when it comes to the oncologist trying to take care of the cancer first without a bunch of inturruptions from seeing other doctors. I guess its just because I am finding out on my own they have been withholding things from me...so I am losing far too much trust. :( And in these HMO's...your STUCK in a group and can't switch doctors....and they know it. (That gives them alot of control.) I am thankful for insurance...don't get me wrong...but I wish I could switch to new doctors that didn't all work together.

Someone asked where in CA I was..they were up North. I am down South. But thanks for the offer. :) I do appreciate it.

Lu Ann, That T.I.A attack you had sounded pretty darned terrifiying to say the least. You mentioned that one of the chemo drugs you were on could cause blood clots. That is the SAME reason I worry....since my DX I have read we are all prone to blood clots on these chemo drugs. Thats why I was so worried when my MRI showed vasular problems. I don't want to run into problem like you had to go through. You poor girl. We all have enough to deal with..we don't need all these added things IF they can be prevented.

Kristen, I asked about having that CA-125 ran due to my mass on ovary. My oncologist said as you did...they are unreliable and she rather not do it since it really won't tell her anything. Argh! I might keep pushing her later just to see one time what it says. I need a little peace of mind if that is even possible.
One more thing Kristen...THANKS a million for telling me to go get release papers for my medical history. I just had hubby run around and do that for me while I did my chemo last monday. I am NOW going to get ALL my medical papers and see what they all say for myself. :) My husband said they were asking him WHY he wanted the release forms. (He said, just so we could have my wifes medical history.) They just smiled and gave him the papers. lol
I bet I will find alot of things out in those when I get them....I already learned alot from the FEW I got from my new oncologist that she did not want to give me. Thanks for the suggestion.

Becky, I agree with you that the MAIN thing I want to know right now is this deal I have with the NODE PUFFINESS? Do you...or any of the other women on this board have it...and IF so...did your oncologist tell you its just from steroids? I am NOT buying it since the right side of mine was a LITTLE puffy BEFORE I even had the surgery, or sterioids. Those big puffy nodes on each side are worrying me more then just about anything. You would think the chemo would keep it down? I pray my chemo is working?

Thanks to all of you for your support and listening. This is NO easy road as I don't have to tell any one of you that are here. Its rough. It sure turns your life unside down. Thanks again to all of you that have listened...cared...and have helped me out. God bless each and everyone of you.

And if any of you made it through this big long post...I sure appreciate it.

Chelee...

[lu ann]

Trust is one of the most important things we need when dealing with this disease. I can't believe you are getting so much hassle when requesting what is rightfuly tour, copies of test reports. I never had to deal with HMO's so I don't know what channels you need to go through regarding complaints.

Love and blessings, Lu Ann

[Chelee]

Lu Ann, Trust IS no doubt the most important thing we NEED and MUST have when fighthing this diease. I have had nothing but problems with trust. In fact....that has always been one of my biggest faults...trusting much to easily. I think because I am honest...everyone else is. HA. I learned some rough lessens through life thinking that way. (But I still tend to trust first...ask later.)

But we have had a rough time getting OUR medical records...by law...they have to make copies of them and give them to use rather they want to or not. (Makes you wonder what they are hiding from us when they are so worried about us JUST even asking for them>)

My husband just told me today that the one lady told him, "this is unusal....we never have anyone asking us for their records." She told him that is why she was having problems finding any release forms for us to fill out. (ha Ha) What a joke...people ask for their records all the time...who is she kidding.

My husband said nicely, "If you can't find...or don't have a release form for us...we can make one up by ourselves and sign it." He said that works just as well. She played his game and said "that is a good idea...go ahead and do that and next time your down here you can drop it off."

So frustrating...I just want my records...its like pulling teeth! Your lucky you have never dealt with a HMO. Some people like them....they are usually the people that NEVER get sick. If you never get sick and don't have to use them...they are great for the price. :) But let something serious come up like what I am dealing with...and watch out...it changes quikly.

Chelee

[lu ann]

Dear Chelee,

The only problem we had regarding our records was when I left my first oncologist and went to Cancer Treatment Centers of America for a second opinion, and decided to stay at CTCA to get treatment.

I lost faith with her after reading some notes she wrote in my file that were totolly inaccurate. She then charged me for the records that I released to have sent to CTCA. They are allowed to charge, but I know she made plenty off of me the first round.

After reading my records I found out that my cholesterol and triglycerydes were to the roof. She never told me. I was a heart attack waiting to happen.

We arrived at CTCA on Monday March 15, 04 for our second opinion. Over the next three days we met with all the different departments and had all the tests repeated with the results given to us Thursday, March 18, by a medical oncologist and a radiation oncologist. They also had a treatment plan for us to consider. We decided that I would stay for 6 weeks and get rad.tx and also a breast biopsy of my remaining breast (benign). My husband went home March 20 and I was able to go home the following three weekends.

We have never experienced the kind of treatment we received from this hospital. When we first arrived we requested copies of all my records to take home. Six weeks later we went into the records office and they not only had our records, but the girl knew who we were before we stated our names. We had only seen her one other time. This kind of treatment went on throughout the hospital. There was no arrogance by any of the staff and we were not treated like a number.

I don't know if they would accept your insurance, but they did accept most. They were not yet part of our insurance network but they accepted the payment. We did not have to pay more then our in net-work out of pocket maximum.

They flew my husband and I round trip for the second opinion at their expense. I also received 1 round trip ticket plus the ticket I didn't use when my husband went home without me March 20. All of our meals were furnished at the hospital cafeteria. They had an inexpensive lodging facility for all out-patients.

If you would like to contact them let me know and I'll give you their number. You can also find them on line. I think it's www.cancertreatmentcenter.com (http://www.cancertreatmentcenter.com/) They are located in Zion, Illinois, Oklahoma, and Philladlephia. I stayed in Zion.

Love and Blessings, Lu Ann

[juanita]

I had a problem getting my records from my first onc, and I'm sure I still didn't get them all. They did not charge me thankfully. And I was completely amazed at what he had written about me when I decided to quit him and the first chemo. I even talked to my other doctors about it. My new oncs office is great. There have been a few ditzy receptionists as they look for a replacement for the one who I guess had been there forever before she got married, but compared to the first place it's doable.

[Sandy H]

Looks like I have been very fortunate to get all my records, with no release to sign. I get copies of my labs the next day, I get copies of scan reports the day I get the results, I ask for doctor notes every 6 months. I ask when I arrive for my appointments and they are ready when I leave the department. All they do is bring them up on the computer and print them right out. I have never had or seen anyone have any problems with getting their records. I have never had to pay anything. There should not be a problem getting our records and I don't feel we should have to pay for them considering how much they charge us for every little thing. It is highway robbery! hugs, Sandy

[catlin]

I go to UC Irvine Chao Cancer Center in Orange. I am on my last few months of Herceptin.(Stage 2 no nodes) My oncologist is Rita Mehta and I have been extremely happy with her. After my double mastectomies last year I got both my surgery and lab reports w/o even asking.I had to have drugs for anemia during my chemo when the numbers were too low, but then had to be off for a few weeks when the numbers rose and then on when they fell again. The chemo department told me the insurance only authorizes when your numbers fall below a certain level, and I have a PPO. I think universities are often a good bet if you are near enough to one and your ins allows it. I know people on HMOs go to UCI.