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Letter to gyn / onc. Letter to gyn / onc.

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Unread 04-26-2003, 02:08 PM
Letter to gyn / onc.

I've written to my gyn/onc letting him know that I regret signing the consent form for a TAH/BSO. I hope it gets there on Monday (I sent it Friday: surgery is Thursday). I have asked him to go ahead with removing the left ovary and fallopian tube plus cyst and take any biopsies he thinks necessary, but to leave my right ovary and fallopian tube and uterus unless there is definite evidence of malignant disease.

I know I am running a risk. There may be cancer but only evident after pathology, in which case I would have to have further surgery and have a delay in treatment. However, I think I will cope better mentally if I climb this mountain bit by bit. It feels so important for me to be in control of all this, at least as far as humanly possible.

I do have a family history of cancer, but not, I think, the type that has genetic implications. My parents died of lung cancer but they were both smokers: I have never smoked. My brother died at 23, five months after diagnosis, of an aggressive and rare spinal cancer. I know I am influenced by their suffering. This is what caused me to get into such a panic initially. I am still afraid, but determined not to let panic take over. I watched my parents and brother do everything the doctors said very passively and all three suffered terribly. (Sorry to be so negative.) I am almost more afraid of being passively "treated" than I am of cancer itself. I don't know whether this makes any sense.

I hope the gyn/onc goes along with this, otherwise I think I will be walking out of that hospital.

Can anyone tell me what the consent form will have on it, if I can get this doctor to go along with what I want? (Remember, because I am fifty, he sees no point in conserving a fibroid uterus and a right ovary that probably wouldn't win any prizes either.)
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Unread 04-26-2003, 03:31 PM
Letter to gyn / onc.


Regarding consent forms - please call your doctor on Monday, and check that they've received your new instructions.

If they have, ask them for written confirmation or acceptance of your instructions - even if it means you going there in person to pick it up. Also, is it too late to request a second or third opinion? It sounds a little like you don't feel too comfortable with how and why everything is going to happen - maybe a second opinion could clarify or give you more information about why you're having the surgery, or why your current doctor would prefer to remove both ovaries.

You'll probably be asked to sign another consent form before surgery, or on the day off as it's so close. This will basically be the same as before, but with the caveat that unless it's considered medically necessary, they'll leave in the remaining ovary and tube...the downside to this is, "medical necessity" is a very large umbrella term that basically includes the surgeon's discretion, and wouldn't give you much legal protection should they go ahead and remove it for a reason you don't think is right. In other words, the consent form will be the same as before, minus the ovary and tube, but it will say there's still a chance the removal will happen anyway.

It really comes down to why you're having the surgery, and how aggressive your surgeon is

Whatever happens, good luck and many s for a smooth surgery,

Unread 04-26-2003, 06:16 PM
Letter to gyn / onc.

Hi Latina...

Although none of us really wanted to have surgery or hysterectomies, I am sure that almost all of us can safely say that it was the best thing and the most reassuring knowing that the cancer was taken out.

Let me tell you a story....27 years ago my mom went into surgery to have a lump removed under her breast. All the tests and fluid came back benign. She even went to Sloan Kettering for a second opinion. All doctors agree. Only a benign cyst that need to be removed.

She had the surgery done at a local hospital here on Long Island. Now remember, this was 27 years ago and things are no where as good as they are today. However, she was also asked to sign a release that if needed, and they find cancer, they had the right to remove her breast. Mom did not want to sign it at all. But, my sister in law, who is a nurse told her that she had to. The worst thing would be to open her up, remove the cyst, let the air get into the incision, and then close her up when cancer was present.

Well when the frozen section was done, during the surgery the cyst did come back cancerous. The cancer was under the cyst and no one was able to find it. Had they not removed her breast she would not be alive today!!

Mom was 48 when this happened to her and now she is almost 75 without a single recoccurance!!!

She did not know what was done until after the surgery. My dad was mad at the doctors and mom was very upset BUT she is around to tell the stories to all her grandchildren and hopefully some greatgrandchildren soon!!

Hope you make the decision which is best for you.

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Unread 04-26-2003, 10:22 PM
Letter to gyn / onc.

I know you must be really nervous about your upcoming surgery, but try to sit back and think about your decisions....what would you advise a friend under the circumstance....Are you bleeding from your uterine fibroids? Have you noticed any natural menopausal symptoms? Is it really worth saving a fibrous uterus and ovary that is possibly damaged or ready to shut down because of natural menopause? After going through this surgery....will you be physically and mentally ready to possibly have another operation..
I agree with a previous poster....None of us wanted a hyst, but for me I am glad at 44 they took everything. Mine was a endometrial cancer diagnosis so I of course didnt' have a choice, but I am so glad my onc/gyn took lymph samples and biopsied everything to ensure my health.....Thankfully it was caught very early and I only need follow ups....
Of course, this is a personal decision but weigh your health very carefully....A hyst isn't the end of the world....I am now enjoying pain free months, wearing white pants (a first in many years), and free from horrible monthly bleeding.
Unread 04-26-2003, 11:48 PM
Dear Latina

After rereading Eileen's Story by Rosamond Richardson for the third time (Eileen had low-grade lymphoma - she was first treated at St. Lucy's in London but eventually turned to Alternative Therapy) I can understand your feelings. My question is, if you do walk out of that hospital, what's Plan B? Hugs, Joanna
Unread 04-27-2003, 01:50 AM
Letter to gyn / onc.

"but to leave my right ovary and fallopian tube and uterus unless there is definite evidence of malignant disease. "

My mum had a TAH for painful periods. During surgery they found that the reason was severe endometriosis. Surgeon check the uterus over once he'd taken it out and it looked OK. 2 weeks later the path report came back with cancer that could not be seen with the naked eye. (They obviously didn't do frozen sections then.)

Surgeons can't always tell just by looking.

But good luck with whatever happens on the day. We'll still be here for you.

Unread 04-27-2003, 11:31 PM
Letter to gyn / onc.

Dear Latina,

I've been thinking about you a lot as your surgery date nears. I'm sorry to hear that you're having second thoughts about things. All the waiting just must be making things agonizing for you.

Earlier today, I visited with a woman up the road who confided that she'd had a hysterectomy and early-stage cervical cancer nine years ago. She kept her ovaries, however, and now seems terrified that something may go wrong.

When I signed my consent form, I understood it to mean that I basically consented to letting the doctors do what they needed to do to ensure my best chance at survival and full recovery. That included at least one thing I absolutely did not agree to (colostomy), so I had a long talk with them about that. I did tell my doctors that I'd like to keep whatever I could. Since I'm still of child-bearing age, they agreed that this was also their plan. But I had to trust them to do what they needed to do.

As it turned out, they had to take everything, and my pathology was a messy read. I am grateful that I didn't really have time to think about it. Had they left anything behind, they would have been derelict in their duty. But they didn't know what they would find, nor what exactly they would have to do, until they cut me open. And I would suspect the same is usually true for most people in our situations.

Surgery is difficult to recover from, and it is never without risk. All things considered, I think I would rather have one big surgery than several fairly big surgeries. In re-reading your note, I guess it isn't clear to me why you want to keep your ovary and fallopian tube. (You may have a great reason. I just didn't see it in your note, so I don't know what you're thinking.)

I will of course support you no matter what decision you make. But the most important thing will be to trust your doctor to do the things that are in your best interest. I do not want your doctors to leave anything behind that could jeopardize your health. And I do not want you to constantly worry for the rest of your life.

I will pray that you and your doctors do what's necessary to ensure your continued health and happiness. Many s for you!
Unread 04-29-2003, 04:22 AM
Letter to gyn / onc.

Rosalie - thanks for telling me your mother's story. I love hearing about survivors' of cancer.

Chris - although I have fibroids and have had them for eight years, they are mostly unsymptomatic. I have only had two episodes of severe bleeding in that time, which were medically managed successfully. In a way my decision would be easier if I had bad symptoms that were really wrecking my quality of life, but I haven't. I don't think a hysterectomy is by any means the end of the world, and if I were convinced it was necessary, I'm sure I could do it.

Joanna - I would only walk out of the hospital if the gyn / onc basically refused to communicate. Then plan B would be to get a referral to another gyn / onc who would be prepared to talk to me. I do want this cyst surgically removed as I believe it is undermining my health. If cancer were diagnosed, it would be as important to me to explore alternative approaches as orthodox ones. My great-grandfather was a naturopath!

Lydia - I was sent for the fateful ultrasound scan that showed up my ovarian cyst, originally to rule out endometrial cancer after some abnormal bleeding. My G.P. didn't suspect it, just wanted to rule it out. I was then expecting to be referred for an endometrial biopsy. So one thing I should probably ask for is an endometrial biopsy. The one "good" thing about endometrial cancer is that it usually creates symptoms in the early stages, in a way that ovarian cancer often does not. My symptoms have stopped completely.

Siren - you hit the nail on the head. Yes, the waiting has been extremely difficult, especially combined with zero communication. If I am honest, I do not entirely trust my doctor. I really do not know him. I trust his expertise, as he is programme director for gynaecology in a big teaching hospital, but I don't yet have faith that he knows me, what is important to me, etc. As for future worrying about cancer, after this experience I do not think I will ever be free of the fear of cancer, especially now that I have reached the age of fifty and given my family history. However, I don't think that is necessarily a bad thing. So many people think that cancer is something that happens to other people and even shun cancer survivors out of an atavistic fear that they might be contaminated by contact. It is good to realise that it could easily happen to me, and therefore to savour each day as a gift.

I simply don't have any good, rational reason for wanting to have surgery that is as conservative as possible - it is instinct and temperament as much as anything. I don't want to traumatise my body more than I have to. On the other hand, I do want radical surgery if there is cancer. So I'm going into hospital not really knowing how things will go (don't even know if my ca125 has jumped, for example). It's scarey, and I will just have to play it by ear!

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