Emergency Hysterectomy--age 23

Okay, I'm not 23---far from it. I started reading and posting here some months ago when I went through my own hysterectomy.

However, now I'm writing on behalf of my niece, who just this week was found to have a recurrence of germ cell cancer. She had an emergency surgery almost two years ago which resulted in the removal of one ovary. She has, once again, had to go in for immediate surgery and this time they performed a total hysterectomy. In a few weeks she will begin chemotherapy.

I am posting here for as much information as I can gather to help her out. Obviously, there's a big difference between what she is expereincing at age 23, versus my experience at age 50+.

I strongly DISLIKE her surgeon. While he has an excellent reputation for his skills, his bedside manner is horrible. He is arrogant, unsympathetic, and has terrible communication skills. For example, when I asked him about beginning hormones after surgery, his reply was, "Well, she's going to have symptoms anyway, so it doesn't matter when she begins them." He also claimed that, after her first surgery he recommended chemotherapy at that time, but she declined. I was with her every step of the way, and he did NOT say that. He said if the PET scan done after surgery was clear, she did not need chemotherapy, as the cancer seemed otherwise to be confined to a very large tumor that was removed with her ovary. The PET scan was clear, and he told her she didn't need chemotherapy after all. However, now that she has had a recurrence of the cancer, he is rewriting history. Arghh!

Enough history ... I am writing to ask for ANY information that might be offered by those of you who have had hysterectomies as young women. Any tips or hints to get through this? How hard is it to get hormones regulated? She will only be taking estrogen, since her uterus/cervix have been removed, as well as both ovaries. Any suggestions about hormones? And is it inevitable that she will experience early, sudden onset of menopause, even with the estrogen (currently a .1 mg patch)? Please, any insight you could offer that might help her would be appreciated.

Also, could those of you who have had chemotherapy offer any tips for what she could do or what she might appreciate my doing to help her through this?

Thanks so much for anything you can suggest.

I didn't have cancer for my hyst. but I am taking ert with Cenestin. I haven't had really any problems as far as hot flashes etc but I have had some. Every woman is different. I would strongly recommend your niece to consider a different doctor. If your niece is being treated like that it would only undermine her healing physically and emotionally. The doctor works for you and not the other way around. God bless you both and I will pray for you.

Please get another doctors opinion. A very important part of having procedures and recovery is to feel you are in good hands. I just had a Hysterectomy almost two weeks ago and they found germ cell on a tumor on my ovary that they initially said was one of my three fibroids. I am in process of getting tests to assure it is not from somewhere else. I will pray for your niece, I am 43 and I've been praying because I feel I am too young for these kind of issues, your niece on the other hand grabbed my heart as I read. Anything I find out, if it will be helpful, I would be happy to talk about. The Germ cell on the ovary, I have been told is a rare type of cell to be found there as the orgin. Has she been tested in her GI tract to assure the cells are not spreading from another place? That is what they are testing me for first, colonoscopy and the one down the throat. They took out my ovary and tube while in there for the hyster, and said there was no surrounding tissue damage from the growth, that was a plus for me.
Keep strong and God Bless you both.
Debbie

Thanks for the replies. I totally agree that she needs to find a new doctor---at least for long-term, follow-up care. However, her mother (my sister) is adamant that this doctor has the best reputation as a gyn/oncologist and, understandably, is advising my niece to continue with him through the early stages of recovery from her surgery and, evidently, through the chemotherapy. Certainly, she is "stuck" with him for now, and you can get the information you need from him---just no sugar coating and little, if any, compassion. Thankfully, she has her mom and me for that!

I have strongly encouraged her to find someone else for follow-up care regarding ERT, as I can't imagine him being particularly sympathetic with any of the complaints or concerns she might have. My sister said there is a nurse practitioner (woman) in his office with whom my niece could probably follow up. I feel that is important, as my niece is not a complainer by nature and, in fact, finds it very difficult to bring up things that bother her. Therefore, she definitely needs someone who will listen well and, in addition, ask questions to determine how she is REALLY doing and what might be bothering her.

Thankfully, my niece is pretty sturdy and resilient, so she can probably cope with her surgeon's personality better than some could, but I don't think she should have to.

In the meantime, I'll keep checking here, looking for advice for coping for the younger women. As I mentioned before, any insights into dealing with/managing chemo and/or surgical menopause for someone this young would be appreciated.

Debbie, They haven't mentioned checking for any of the things you mentioned. I wonder if they are looking elsewhere for the cancer for you because it is unusual to see this type of cancer beyond the early-twenties? (Not unheard of, just mostly a cancer that strikes in the late-teens/early-twenties.) Also, I know there is more than one kind of germ cell cancer. Hers is a dysgerminoma. They did do a complete PET scan after her first tumor, almost two years ago, which showed no sign of cancer anywhere else. They will be doing another scan, particularly focusing on her head and lungs (scary!!!) to make sure it hasn't gone elsewhere. Thankfully, she doesn't have any signs of brain involvement, etc., but if it is early stage there probably wouldn't be any sign. Are you going to be having chemo? (Or have you had it?)

First of all, let me say that my heart goes out to you, your niece, her mom and the rest of your family. This definately has to be a tough thing to have to go through at such a very young age and to have cancer on top of it all.
I had surgical menopause after my remaining ovary was removed. My doc and I had discussed estrogen replacement prior to the surgery and agreed on the patch because bc pills used to make me sick.
He put one on me in the recovery room and I remember waking up in recovery having the hot flash from h***!
It lasted about 4-5 days, it was bad. Since then, I have had only maybe 2 a month which are no where as bad as the original, I dont even sweat with them.
I am on the Climara patch 0.05mg, very low dose because breast cancer runs in my family and I didnt want to take a large dose if I could handle it. 2 hot flashes /month are tolerable enough to not increase my dose.
Your niece has a lot to deal with. She has the diagnosis of cancer and the hyst.
I know how emotional I was having the hyst at 37 and I had a child. I can't imagine having it at 23.
I would seriously suggest having her start some counseling. You yourself said she doesnt complain much, she might not be opening up to you or her mom about the depression.
As far as the surgeon goes----give him the boot. Even if he is the "best", it will not benefit her with his attitude. I have found that nurse practitioners are wonderful because they look at patients like anurse does...the entire person.
I wish everyone the best, and I hope once your niece feels better, she will come and join this wonderful group of ladies and she will know how many people she has in her corner.

At this point, I really do not know what I am facing. I had my hyster on 11/15 and that is when they found the growth on the ovary, it was unexpected as I had a trasvaginal ultrasound before my surgery and the doctor stated I had three fibroids. The largest one, was the one on the ovary and they did not know it till they were in there. They will be testing me in the GI area, they think the cell may have traveled from the colon. That will be monday, so I will see. That is why I asked to be sure they are checking everything possible ofr your niece. How is she? Emotionally and physically at this point. She is so young. I guess I am hoping that I am one of the rare ones to have it start on the ovary at my age because they checked all around while they were inside of me and could not find anything on surrounding areas. they also stated they did not feel it had been there long, but I still have no clue, or direction in this. That is what is hard. What ever it is, I hope it is early enough to give me the chance to be here alot longer. I have no symptoms of anything and feel great even though it is a short time after my hyster. I will do what is necessary to beat this and I feel God is by my side. Thank you for asking and I will pray for your niece.
Debbie

To all who have replied,

Thank you. I appreciate your concern and helpful suggestions.

Marian, thanks for your kind thoughts. I think your comments are right on target. I believe I have said all I can about the surgeon at this point She is still in the hospital and under his care, so I don't want to sound like I'm undermining the confidence she has in him at this crucial time. She does know I don't like him and why. (And she shares the same opinion.)However, I also believe he has the requisite skills to treat her effectively. I am concentrating on encouraging her to find a more agreeable physician/nurse practitioner to take over her long-term care. As a survivor of more emergency surgeries than I care to remember, I've always said that my surgeon doesn't have to be my best friend---I just want him/her to be highly skilled. However, when it comes to long-term care, the ability to communicate and show some compassion rates very high. I also appreciate your concern for her emotional wellbeing. To this point, she has been confiding a great deal in me, as well as in her mother; but I can't imagine her feeling comfortable discussing her feelings with this surgeon. In fact, I don't know anyone who would. He does have a top-notch reputation in our community and I was referred to him myself for my hysterectomy, but I said no way!

Debbie, Please keep us posted how you are doing. How kind of you to take the time to respond when you have so much to deal with yourself right now.

I think I just panicked, because my niece really turned to me for answers, since I have dealt with similar issues myself. However, I know there's a vast difference between what someone experiences at age twenty-three versus in their fifties (although, now that I think about it, my problems started between age twenty-five and twenty-nine---but I didn't have the hysterectomy until recently). Thanks so much to those of you who have shared your experience with the surgical menopause. I'm going to continue to wade my way through this site, much as I did before and after my own surgery, to find information more applicable to her circumstances and age.

I did not know she was still in the hospital. I agree with letting him take care of her for now and to get someone to take over for her longterm management and care. She is very lucky to have someone like you who will go searching for the answers to her questions.
I will continue to pray for her and the rest of you in hoping she recovers well and that you all can help her deal with the rest.
Please let me know how she is doing and when she is able to come home. For some reason, I feel a real connection to her through your story.
Take care.

what helps with chemo is black licorice it helps keep you getting as sick when you use it sorry to hear about all your nieces troubles you are in my prayers

I wish so much that I could help, but I kept one of my ovaries so I don't know anything about HRT. I'm young (28), and just wanted to tell you that your niece will be in my thoughts - give her a hug for me.