Low Malignant Potential Tumor

[dabutler]

Last week, I had my right ovary and tube removed due to a cyst with multiple nodules.  My gyn and a consulting oncologist both said they thought it was an LMP tumor based on the ultrasounds (pathology reports aren't back).  I have researched the topic as much as possible and the information I have found varies from you should have a complete hysterectomy with radiation and chemo to saying that just removing the impacted ovary with no further treatment is the best way to go.  Does anyone have any experience with this type of tumor and what treatment options were you given?

[HVAC]

Even if it doesn't I have learned to live with out Ovaries. Hang in there. Let me know how it goes.

Alex

[dabutler]

My gyn onc has said that I can do estrogen only therapy after he removes my other ovary.  I am keeping my cervis since he said he sees no increased risk by doing so.  Due to the large amounts of scar tissue from my four previous c-sections and other abdominal surgeries, I will have an abdominal c-section instead of robotic and I am meeting with a plastic surgeon about doing a tummy tuck at the same time as the partical hysterectomy.  Praying the hormone therapy works for me...

[HVAC]

Just know when you lose your Ovaries you are changed and they can't give you hormones. I have hot flashes and night sweats all the time. I soak my sheets every night. My sexuality is gone. I use dilators so sex is no longer painful like it was after my hysterctomey.  Orgasm and libido are gone without my Ovaries. Both my Ovaries had Cancer but I would have kept at least one if I could have. May be others have not had my experience.

Alex

[dabutler]

My gyn/onc had a cancellation and I was able to get in earlier.  He said that the tumor was an LMP and that it was contained in the right ovary and did not rupture and that my gyn saw no other signs of cancer during the surgery.  I will have a PET scan tomorrow just to ensure that there are no other tumors that he did not see.  The gyn/onc has recommended removal of the uterus and the other ovary and tube if I am through having children.  He said that I could opt just to monitor things and that the chance of recurrance is very small and even smaller that it would recur as invasive cancer.  However, the surgery would give me the peace of mind that I had done "everything medically possible" to prevent a recurrance.  I keep reading posts on Insight where people have had recurrances and even invasive cancer recurrances, and they all had the complete hysterectomy alogn with removal of the ovaries and tubes.  I can't find any data telling what the % of recurrance is with just the removal of the impacted ovary vs removal of everything.  I would like to keep my other ovary and uterus until I go through natural menopause, but not if it means that I am endangering my life.  Just too much to think about!!

[HVAC]

The way they do the surgery is case by case. In my case they could not use the robot or small incisions. They can use the small incisions if they do not have to worry about the ovary rupturing and leaking inside you. I have researched sex after hysterectomy and have learned some things which have made it better. I also went to a Physical Therapist who was great.

Try to plan some distractions for yourself. Most of this stuff is out of your control. Do something you like everyday. Take a walk, listen to music, watch a TV sow or movie.

I was lucky I had less than a week from my ultrasound to surgery. I spent time with my husband, played with animals, went horse back riding.

Alex

[dabutler]

I have been researching hysterectomies and the options trying to determine which option is best for me if I have to proceed with the surgery.  I am shocked at the immense number of women that have major pain and lack of libido after a hysterectomy - especially combined with removal of the ovaries.  My husband and I have sex almost every day now - it's very important to me and to him, so I am horrified to think about completely losing that part of who I am.  I know several people who have had hysterectomies but not well enough to ask them questions about the quality of their sex life and how satisfying their orgasms are post surgery.  I had assumed I would just have a hysterectomy and give up my other ovary to reduce the chance of recurrance, but the more I research, the more I feel like I want to avoid that if the risk isn't great.  Unfortunately, I can't get in to see the gyn onc until late March, so I have six more weeks to worry and research before I get any answers.

[HVAC]

I was shocked at how it has changed me. I know I had to lose my parts but I wish some one would at least have told me how much things could change. I did get a good Physical therapist who helped with the pain. Now the pain is gone there is no feeling what so ever. I love my husband. It was a shock to both of us. I did not know some pleasure came from Uterine contractions so when the uterus is gone then that part of it is gone. For me they cut a nerve because I lost everything. The Oncologist when I asked him said I should not be having sex anymore anyway. I am married. I guess I just had been more prepared and now Doctors just don't want to talk about my issues. I did my own research on the internet. Some of the stuff was  off the wall and militant but some of it made sense.

Alex

[dabutler]

Thank you so much for your response.  I am worried about the loss of the second ovary as well.  Most of the research I have found on-line has indicated that there is a relatively low chance of reccurance with an LMP tumor that is contained within one ovary.  My preference would be to keep my second ovary and tube and uterus, but obviously I don't want to risk developing invasive ovarian cancer.  I am 44 and have ten children already, so retaining fertility is not a concern, but quality of life certainly is for me.  I am trying to research the options should the oncologist recommend a hysterectomy - my gynecologist said I might prefer to keep my cervix but I don't know the advantages of doing so.  My husband and I have a very active and satisfying sex life, and it is something that is important to me to maintain if at all possible.

[HVAC]

If you do not have to lose both Ovaries I would not push for that. I had to have both of mine removed and have had lots of problems. I never wanted children so that is not the issue. I have about 20 night sweats a night. I soak my pajamas and the sheets. If they are worried about Cancer hormones are out of the question. I also have hot flashes. I had gone through Menopause but this is way worse. Bone density becomes a problem. Also I am married and have sexual problems because of no Ovaries. I use to like sex now I just pretend so my husband has a sex life.I have been to experts and no one can help. I used to think Ovaries are not important until I lost them. If I could have one back I would but both mine were Cancerous. If they have to come out you have to make allowances, but if they don't they are necessary.

Alex

[dabutler]

My gynecologist said the pathology report only said it was an LMP tumor and that it was contained in my right ovary.  They did not do any staging and he did not know anything further as to the type of the LMP tumor.  Do they save tissue samples so that I can request that more testing be done?I have been referred to an oncologist for follow-ups every six months but haven't been able to see him yet.  I am currently in my forties and have no plans for more children, so will ask if I should proceed with the surgery to remove the other ovary and tube and uterus as a precaution when I finally get in to see the oncologist.

[Sanjivani Wanjari, MD]

Hi,
Now that the surgery is done, you should wait for the pathology report which will make the diagnosis clear. Further treatment will depend on the nature of the tumour and surgical staging.
Different types of treatment are available for patients with ovarian low malignant potential tumour. The type of surgery depends on the size of the tumour and spread of the tumour outside the ovary and the woman's plans for having children.
If the patient wants to be able to become pregnant in the future, only the ovary with the tumour and the fallopian tube on that side is removed. These patients still should have surgical staging to see if the tumour has spread. If the tumour is only in one ovary, the patient is usually observed without further treatment. Experts recommend follow-up visits at least every 6 months for the first 5 years after diagnosis.
For women who have finished having children, the uterus, both fallopian tubes, and both ovaries are removed. Surgical staging is done to see if the tumour has spread outside of the ovary or pelvis. For invasive tumours that have spread outside the ovary follow up treatment with chemotherapy or radiotherapy will be necessary.
The answer is based on information provided. Exact advice is not possible without a proper examination and investigations. You are requested to consult your Doctor. Take care and keep us posted.