After chemo...

steph23yo

My oncologist says that if all goes well, I should be done with chemo by September of this year, but for younger women who do not get complete hysterectomies, what type of after chemo surgeries or procedures are involved? My previous surgeon (I'm trying to switch because he treats me very poorly as a person) said they would probably open me up again just to visibly make sure no more tumors or cancer is left. Does anyone know about this procedure? Is it as debilitating as the first tumor removal surgery? I'm still in school and it's hard to plan how long I'll be out or when I'll be back when I have a surgeon who doesn't answer any of my questions, so I was wondering if anyone here might know.

BonnieR

Dear Steph, that is great news and Sept will be here before you know it. I know lots of women have a second look surgery, but not as common as it use to be. I had a second look surgery but had to have a hernia repair and some other problems taken care of, that is the only reason I agreed to it. I am sure you will hear from others and get a variety of opinions on it. I believe I did heal faster but has been awhile and don't remember real well. Hope that helped a bit. Hugs N Prayers Bonnie

mopar

What area are you in? I'm in Michigan and have a wonderful gynecologic/oncologist. He's not perfect, but I wouldn't go anywhere else. He's compassionate, thorough, and believes in quality of life.

My second surgery was for another mass (recurrance) so I don't have experience with exploratory surgeries. I agree with Bonnie that it's relative to your circumstances and I would certainly be sure it's necessary and if so, try to take care of any issues all at once. My first surgery was full hysterectomy, omentum and lymph node removal. Second surgery I had a mass removed, more lymph nodes, and I requested that my appendix be removed since it seems common for women over 40 to have issues with it. I figured, as long as you're in there and I don't need it, take it out now.

I hope that you find someone you feel comfortable with who can answers your questions. Maybe if you let us know what area you are in some of the ladies here can give you a referral.

Hugs,
Monika

steph23yo

mopar said:

What area are you in? I'm in Michigan and have a wonderful gynecologic/oncologist. He's not perfect, but I wouldn't go anywhere else. He's compassionate, thorough, and believes in quality of life.

My second surgery was for another mass (recurrance) so I don't have experience with exploratory surgeries. I agree with Bonnie that it's relative to your circumstances and I would certainly be sure it's necessary and if so, try to take care of any issues all at once. My first surgery was full hysterectomy, omentum and lymph node removal. Second surgery I had a mass removed, more lymph nodes, and I requested that my appendix be removed since it seems common for women over 40 to have issues with it. I figured, as long as you're in there and I don't need it, take it out now.

I hope that you find someone you feel comfortable with who can answers your questions. Maybe if you let us know what area you are in some of the ladies here can give you a referral.

Hugs,
Monika

I'm in the California Bay area. I'm looking into new surgeons/oncologists in the Concord, Davis, or even Berkeley areas.
Yeah, I don't expect a perfect surgeon, but someone who will listen and answer my questions. I think he sees me as too young to know anything, so he only answers questions I ask my mom to ask him, but she can't be there every time I have a question to relay it.

It's good to know that the exploratory surgeries are not all necessary, because I recover very slowly from surgeries I've noticed.

saundra

I think you have to have a gyn/onc surgeon that is compassionate and willing to answer your questions. So I would get a second opinion before any further surgery with this surgeon and see how the communication is. I have never had "second look surgery" mentioned to me. I had 4 chemo treatments, surgery (removal of all female organs, spleen, omentum, and radio ablation on my liver tumors) followed by five more chemos of carbo/taxol. Then I had a CT scan that showed no tumors, my CA 125 was 7 and nothing physically could be found. I was declared "no evidence of disease" and put on a maintenance dose of taxol every 4 weeks for 12 treatments to hopefully keep me in "remission" for a longer period of time. I was Stage 4 because of the liver involvement. I will have another CT scan in June, 8 months from the last. I was told the CT scan will only pick up .5 cm or larger tumors usually. My CA125 blood test is a good marker for my tumors and it remains below 8 and I have one every month. I have never had a problem with any of my doctors answering questions and my surgeon is the Head of the Dept. for gyn/onc of Texas Oncology in Dallas so he is a busy doctor. ((Hugs)) Saundra

floridajo

Steph,
I had a second look surgery/colostomy reversal. The effects on the body are not as harsh as the first surgery( a lot less to remove)They opened me up at the same area,so no new scar. I'm very happy I did this also as they were able to catch more cancer exsisted inside me,when the ct scan and ca-125 said I was NED...I was then switched on to Doxil for 6 rounds and had a 13 month remission. Many Dr.s do not do the second look surgery any more and there is alot of controversy about it..but personally for me it was a good thing. It gave the Onc alittle more info about me,like platinum resistant,normal scans as well as normal ca-125 draws mean very little to me. Good luck sending lots of prayers your way...(((hugz))~~Joanne

curlee8661

Dear Steph,
I can certainly relate to your difficulties with your surgeon. Mine is not very good with people, and is reluctant to answer questions as well. Part of the problem is the fact that his office is always packed full of patients and he has no time, and yhe other is that he seems to believe that the less you know the less you'll worry. However, my personality is such that I worry about what I don't know far more than any reality. Since my Gyn/Onc is a brilliant surgeon, and a fellow cancer survivor, I trust him and would never switch to another doctor who may have a more pleasing bedside manner, but not necessarily be as good at keeping me cancer free. So, be sure to consider all angles before making this change! It may be better to have a heart-to-heart with this doctor and spell out your needs and concers, and consider getting general information from other sources (ie;your other doctors, the internet, etc.).

As far as the "Second Look" surgery is concerned, I did have one, and even insisted on getting opened the same way as before, instead of just a "peek-a-boo" look through tiny holes. In my opinion, it's important to double check after chemo with this second surgery to make sure that all is clear, and no cancer cells are found. If they should find more, they can remove it and you can get additional treatment to deal with it. If it's all clear, you have the peace of mind of KNOWING. There's so much worry and uncertainty associated with a cancer diagnosis, and if there's something you can do to minize the worry, I think it's well worth the recovery time you may need. In my case (it may be differnt for others), the second operation was like having a tooth pulled in comparison to the first one. Two days after surgery, I was doing laps around the nurse's station as if nothing had happened, and 10 days later I participated in the L.A. "Run for Her" 5k walk/run for ovarian cancer research and awareness.

Weather you decide to have the second surgery is an important decision, one that could have a long-term effect on your health. If you were my daughter, I would advise you to consider the stage of your cancer, the fact that you didn't have everything removed during your first surgery, as well as the emotional comfort you may gain from seeing the pathology report showing how successful the chemo was.

Best whishes, and (((HUGS)))
~Marianna~

kris43

Steph - I did not have a 2nd look surgery and my surgeon/oncologist said that was unnecessary. Her opinion is that she was literally INSIDE my body and knows what is what. I responded well to treatment, my CA 125 went from 1660 to 6.9 and so far so good. That doesn't mean I'm not closely monitored, or don't have blood work, or don't go in to see my family doctor when other things arise - it just means my doctor doesn't believe in doing 2nd look surgeries. I trust her and that's what matters.

Nancy707, who is a member of this site lives in California - she might be able to help. I'm sure you could find her on the list of people to send personal emails too.

I am so sorry you are having such difficulties - but once again this is your body and your life that we are talking about here. It is your right to ask questions and to get answers. Your ability to fight this thing hinges on being comfortable knowing you are doing everything that is possible - and that means communicating with your oncologist. He/she works for you. Not vice versa.

You hang in there and if you haven't already done it - you should get in touch with Lyndsie and Jenna (look at past posts) they are 21 and dealing with the same things. I am 43 and cannot imagine having to deal with this when you are so young.

Take good care and let us know how you are doing and what you find out. Hugs!

Kris