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Unread 06-19-2004, 01:14 PM
very scared

So much going through my mind, I don't know where to begin.

I am so afraid of ovarian cancer.. we already know I have breast cancer (had a mastectomy 2 weeks ago) my Mother died of breast cancer, my Grandmother died of ovarian cancer and my uncle of prostate cancer.. my onc thinks I probably have the genetic mutation (brca1 and/or 2) she is asking my ins. for permission to test.

What really terrifies me is that I had NO idea I had breast cancer, I couldn't tell the difference in the lump because I have had fibrocystic breast disease for years. I DO have symptoms of ovarian cancer.. lower back pain, leg pain and numbness, swelling of my belly (though that really became noticable only after my surgery to remove my breast, so it may be related to the surgery) I also can feel what feels like enlarged lymph nodes, bumps that are near my left hip, leg.. at the groin area. and I could SEE a swelling (lump) that was soft and about the size of a small lemon on my left side (that went away).. I am so scared!

Surgery now scares me too.. I swelled and had trouble breathing after my mastectomy.. I'm afraid of dying in surgery now.

My oncologist wants me to have my other breast removed.. she said if the tests come back saying I have the BRCA1 etc.. I should have a hysterectomy too.. I'm thinking about the order. My docs aren't even looking for ovarian cancer yet (probably my fault because I haven't really brought it up) but they do know that I have cellular changes in that area (colposcopy results) I'm not even sure what ?s I have for you here.. I'm just scared to death and looking for answers and help in making decisions. I'm pretty disappointed in most of my docs right now. I've been lied to, had important info kept from me and brushed off when I had breathing problems, they sent me home because the x-rays didn't show anything in my lungs! I could NOT breath! turns out it was an allergy to morphine and percoset.
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Unread 06-19-2004, 01:57 PM
very scared

Im sorry you are going through all of this its a scary time for you and the waiting is probably the worst! believe me I am the same . I hope everthing turns out ok and like me everyone is telling me to stay off the net because I read so much stufff and then I cry because of some of the information I get. But then there is this site and its very informative and helpfull so if you need to talk to anyone you can always email me . I am on here quite a bit. Also I have fibrocystic breast and have a couple (I hope Cyst) in the breast and like you what is a cyst and what isnt. I need to go get my annual mammogram but I have surgery for removal of my fallopian tube that is dilated. So one thing at a time I guess. but good luck and I will pray for you .
Unread 06-19-2004, 02:04 PM
very scared

I know how scared you are. The fear of cancer "cancerhead" plus all the info on the internet can be terrifying. YnosO5 gave you great advice. Please find a good gyn/onc that you can trust and talk with. Have the necessary tests, and procedures and don't think the worst. Most lumps and bumps turn out to be benign. Keep coming to this site for support.
and sanity!
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Unread 06-19-2004, 02:04 PM
Being Scared is Normal

You have a lot going on right now and it's perfectly natural to be afraid. Welcome to our group. I can't give you medical advice, but I can tell you that if you have concerns about any kind of gynecologic cancer, including ovarian, you should have a referral to a gynecologic oncologist, the specialist you want. These doctors have extra training. Also, if you have doctors whom you mistrust, then you need to consider changing as well. I had to change oncologists and now I have one that I can communicate with. As for the nerves--take it from a "pro" here that I'd be worried if you weren't scared. It happens to all of us. Tuesday I saw my doctor, got CT scan results, and reminded him of my "plan" and when he couldn't hook up with another doctor to consult, it was decided I would go ahead and try Tamoxifen. This is what I've wanted--it has a chance of helping me stay off chemo for a while. Well, today I went to have the prescription filled and take the first Tamoxifen--this is what I chose, what I wanted (I'm his first patient with ovarian to take Tamoxifen so he's a bit leery too) and I had a massive case of nerves. This was new. It can cause nausea and hot flashes. This "has" to work. Nerves big time. See? Deep breath. Ask for a gynecologic oncologist if you feel you also have symptoms of a gynecologic cancer, ans ask anything and everything on this board.
Unread 06-19-2004, 02:41 PM
very scared

Thank you all for the replies. Unfortunately I don't have many options with what docs I can see.. my insurance is Tri-care (military medical system) if something is available at the base hospital, insurance won't cover an off base doctor. There are no gynecology oncologists at the base hosp. but they think a regular gyno is good enough.

My mastectomy was performed by a "general surgeon".. I am seeing a civilian oncologist for the breast cancer follow up and treatment though.. she is still running tests before deciding on a plan of action. I am having a bone scan tomorrow. She did the blood work for "tumor markers" etc over a week ago.. I have called to ask for the results but only get an answering machine. Yesterday I got a message left on my answering machine saying that the results of the "genetic testing" and bone scan are not back yet.. No kidding! Since I haven't HAD those tests yet! No info was given about the tumor marker tests, which I did have. FRUSTRATING!!!
Unread 06-19-2004, 02:56 PM
very scared

Unfortunately with all that is going on with you, a regular gynocolgist is NOT good enough. You need to see a specialist, which in this case is an oncologist / gynocologist.

Call your insurance company, complain, yell, scream and anything else you have to do. If I was in this situation, I would tell my insurance company that if for any reason something happens to me which could have been prevented, by referring me to a specialist, my family and I will be holding them personally responsible. shake up the system a little and speak to the big bosses only. Be assertive!!

Please let us know how you make out.
Unread 06-19-2004, 09:42 PM
very scared

Dear whatis,

Being scared is very understandable.

I recommend that you call your doctor and tell her of your ovarian fears and symptoms. Hopefully you can arrange for some imaging tests like an abdominal MRI.
Even if you find a way to get another doctor, at least you will have these tests ready to further proceed.

Realize that many people had no idea that they have cancer when it was caught incidentally.. myself included, but we musn't let fear paralyze us when we need to be vigilant and take action.

As you may know, letting stress get to us can contribute to breathing difficulties. Find out what else can be given to you other than what caused your allergic reaction. I don't have much familiarity w/these things, but I imagine that allergy testing can be done before surgery for specific drugs.

Colposcopies show cervical/vaginal changes, not ovarian ones.
Genetic tests provide indicators, not sentences. For what it is worth to you at this time, I would like to give you this link about dietary matters in preventing breast cancer. Many of the dietary tips are good for cancer prevention in general
If you don't trust your doctors, and even if you do, it may be a good idea to get your lab reports faxed/mailed to you so that you will have the info.

Sorry about your upsetment.

Unread 06-19-2004, 10:31 PM

Many of the Sisters will chuckle at that, as that has become what I'm known by--the poster with the "never waste a good panic" statement. In other words-while nerves and concerns are fine, don't go into that panic mode until the Dr. himself or herself panics. Be persistent and insistent if you must, ask all the questions you want, push for outside referral if you have to--but never get in a panic. Even with bad bad nerves, a clear head or as clear a head is possible is necessary. Take it a step at a time.
Unread 06-20-2004, 07:44 AM
very scared

HI, there!
I'm sorry you are having such a rough time right now. The sisters on this board are a WEALTH of information. You will find so much support here!

I also want to mention a website I was referred to from another sister called FORCE. Facing Our Risk of Cancer Empowered. It is for women who are at high risk for gyn cancers either through family history or BRCA 1/2 positive status. Tremendous amount of information and support there.

I noticed you said they were recommending genetics testing but didn't recommend genetic counseling? Definitely don't want to do one without the other. My genetic counselor is the greatest. They are up to date with all the latest research and surveillance and surgery options.

My family has gone through testing. My aunt got tested for the family for BRCA 1 and 2. She is the only living female relative other than me on that side. She had breast cancer. She was BRCA negative. Since my mother has passed already, they don't know if they are going to test me or not. The genetic counselor is going to call me this week. She thinks they may recommend I be treated as high risk regardless.

I will also emphasize what the other sisters have said - you need a gyn/oncologist. Perhaps your current civilian onc can help put some pressure on them for you?? Be your own advocate and don't take no for an answer.
Definitely try and save your panic for when it's really needed! It is hard though!

Come back and let us know how things are going for you!!


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