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Avatar universal

Growth of left Ovary. Mucinous Ovarian Cancer 3 years ago (need expert opinion)

Hi,
This is concerning my wife. She is now 28 years old. Three years ago in 2012, we had our first baby with C-section, during the C-section operation my wife's a large cyst in right ovary were also removed. However, her left ovary was left intact. Followup pathology report suggested mucinous ovarian cancer. Consequently. she went for a chemotherapy (carbo and taxol). Since then she has been undergoing 3 monthly regular check-ups (vaginal ultra sound) for 2 years and then 6 monthly check from the last year. Her check up in December 2015 showed a growth in size of the left ovary. Her doctor is Gyn-oncologist he recommended CT scan and CAE and CA-125 tests. The blood results are apparently normal, however, the CT-scan shows a growth of left ovary around 10 cm in size. It appears to be a large tumor and there is a "suspicion" of recurrence according to the doctor. Doctor suggested a surgery by the end of January, in which he would remove the left ovary and uterus. There is a suspicion that the tumor may have affected the bowel area (no metastasis is found in CT scan) . Because the surgery is a major one, my concerning questions are:
- Is a decision for surgery to remove the left ovary along with uterus is the best possible option in her case, given her history?
- Do we 100% rely on CT-scan results or should we go for MRI to save her from possibly futile surgery?

We really hope it turns out to be benign ovarian tumor. Can someone please share her experience or provide an expert advice.

Thanks!
11 Responses
667078 tn?1316000935
The surgery sounds right to me with her history. I am a believer in second opinions. If you want another baby there are Gyn/oncologists who specialize in fertility.  Most gyn/oncologists do not care about fertility it is about saving the patient only. I am not sure a MRI will show more. When you have cancer they do not do MRIs but ct scans with contrast. If it is ovarian cancer there is no playing around it is very rare but it is the second leading cause of death over all in women after heart attacks. Make sure they are also doing debulking surgery that is very important. This cancer spreads even after all the female organs are removed. I had all my organs removed in 2013 and it has been in my liver, diaphragm, bowels, spleen, and my lymph system. This is a cancer you can live with along time if they get it on time. If they get it late like with me you are on chemo all the time for the rest of your life. She had more than a two year remission which is very good for her.
1 Comments
dear Alex,
Thanks for your response. Concerning the baby, it appears to be too late, because the size of the ovary is too large to hold pregnancy. Her CT-scan results do not suggest any metastasis.  Following are the report from her CT scans. Mediastinal and supraclavicular no abnormalities, especially no
enlarged glands. Also, bilateral axillary no enlarged nodes.
No bilateral pulmonary nodular abnormalities. Homogeneous aspect of the liver parenchyma without focal abnormalities. Normal bile ducts. Normal gallbladder. Normal aspect of the spleen and pancreas. Normal duct pancreatic. Normal adrenal glands bilaterally. Normal kidneys on both sides. No retroperitoneal lymphadenopathy. Pelvic a solid RIP with dimensions of 9.9 x 9.9 x
10.2 cm.  The mass displaces the uterus to ventrocaudaal. No ascites. No omental metastases. Osseous no details.
Conclusion: central mass in the pelvis, in the first instance suspicious for recurrent ovarian carcinoma. No evidence
lymph node metastases, also no evidence of distant metastases.

Based on the above  mentioned conclusion a surgery is planned for her on 29th January. Do you think we need a second opinion before the surgery?
667078 tn?1316000935
You have time. But if you like the surgeon and all it is fine to go with him or her. My first surgeon was an *** so I wished I had gotten a second opinion. Also the chemo facilities were substandard. I changed mid chemo. My cancer was so advanced I thought there was no time. There is always time before a major surgery. I am sorry about the pregnancy. Just understand that when she has all her female organs out that does not mean she can't get Ovarian  cancer anywhere else. It can still spread to other organs at anytime. Hopefully it won't but it can. Ovarian Cancer is considered a chronic disease.

Alex
667078 tn?1316000935
Sorry about a baby. You have time for a second opinion but if you like your doctor and all there is no need for one. Understand that when she has all her female organs out she can still get cancer in the other organs in the future. Some people think once you take the ovaries, tubes, and uterus out and there is no cancer anywhere else that is it. Unfortunately it is not. They may even talk about more chemo to be safe. She could have a very long remission. This is considered a chronic cancer. Each case is different. There is no reason she might beat all the odds. I have known women who had the surger and some chemo and that was it.

Alex
Avatar universal
I had surgery Dec. 21, 2015 for a pelvic cystic mass diagnosed using ultrasound and MRI. It was thought to be benign and the pathology report during surgery was benign. The cyst was carefully drained and removed through a 3" abdominal incision by a gyn-oncologist. The final surgical pathology report revealed an early invasive serous carcinoma in a mucinous cystadenoma. It was capsule intact, no tumor on ovarian surface. No malignant cells in ascites or peritoneal washings. I'm so thankful. I have been told I could do nothing beyond surgery and have an 80% chance it will not return or have 3 rounds of chemo to increase my odds to 95%. I am choosing 3 rounds of chemo and will be setting appts. tomorrow. It was not an easy decision, but reading these posts confirms an aggressive approach is best for me. I'm 69 and had a hysterectomy 30+ yrs, ago, with only 1 ovary remaining. Any thoughts or advice?
667078 tn?1316000935
I am sorry you have to go through this at all. The three chemos are what I would do. What advice do you need? Each person responds to chemo differently. Eating is important. I stopped eating all together which was bad. They told me I would be fine and gain it back. The next hospital I went to said eating is like taking medicine you do it on schedule whether you want to or not.

I shaved my head because I was going to lose my hair. I did not want to watch clumps fall out. I bought all kinds of nice bandanas from REI. They had pretty ones. I also got one from a bicycle shop that was sewn so you did not have to tie it. This was nice for when people came over unexpectedly. Take nausea medication before you get nauseated. These all seem like no brainers but I did not know them. I am here for any questions or support. I have had cancer for 3 1/2 years. I am going on my 6th different kind of chemo. Staying active is good. If you can walk or swim even a little as much as you can. I have dogs so I have a lot of walks. If you get anemic take folic acid and B12 sublingual.

Exercise also helps anemia. They give you benadryl , steroids, and anti nausea medication with the chemo. You might be very hungry. The benadryly can make you sleepy. Sometimes you have to wait so an i pad, a book, or knitting is good to take with you. I write about my experiences it helps. I started out angry because I have Multiple Sclerosis, Stage 4 ovarian cancer, and the BRCA mutation giving a 98% of breast cancer.

Since I started writing I have gone from being a victim to having some control. At least on my attitude. I am now very happy. I realize other than the diseases I have a very good life. I have found out what good friends and family I have. I adore my husband. This is in some ways harder on him. Oh with the MS I developed a bucket list. I went on a hot air balloon. I have camped in the Virginia Mountains, Okracoke Island in NC,  and Lindville Falls NC. I rode an Icelandic Horse.

I went to Europe for three weeks. I found a lady who lets me ride her horse. I want to go in a biplane. We are going to Gettysburg and other sights this summer. Last weekend I went to a wild animal sanctuary. I adopted a dalmatian puppy last year.

I realized what we remember in life are special moments. You add a lot of special moments together. Playing with my dalmatian makes me very happy. I spend very little time at the hospital. I did have my bowel twist on New Year's day and ended up in the ER and hospital for two days. I looked at and thought about my pictures of Europe, my pets, and my husband.

I realized worry is trying to control the future and you can't. You can only able to think of one thing at atime. My husband got me a lava lamp for xmas. When I can't sleep I play scrabble or concentrate on the lamp. I count the number of balls of wax. It keeps on changing.

Alex
1 Comments
My wife underwent surgery by gyn-oncologist and had her left ovary also removed along with the uterus, omentum, peritoneum, fallopian tubes etc. The result of pathology suggest grade 2c (clinical staging) and 3a pathological staging. Doctor (medical-oncologist) has suggested 2nd line chemotherapy with XELOX regimen (a combination of Oxaliplatin given as infusion and Capecitabine given as tablets in 8 cycles, where each cycle is repeated after 3 weeks). Usually this regimen is given to colon cancer advance stage cases. The nature of malignancy is of mucinous adenocarcinoma of intestinal type, and that's the reason they want to try out with these medicines. Are you familiar with this Xelox regimen for ovarian cancer cases?
Avatar universal
Second opinions are a good idea if obtained from a well-respected and experienced doctor (in your wife's case, a gynecologic oncologist). And they say it is best to go outside your normal "network" of doctors and hospitals and sometimes outside your geographic area.

I wish I had done things very differently because my ovaries and uterus were needlessly removed for a 9.5cm benign ovarian tumor, a mucinous cystadenoma. My gynecologist misled me about my situation and rushed me into surgery. I would have done things very differently had I known just a smidgen of what I have learned since my surgery.

That being said, if your wife did indeed have ovarian cancer, then her situation is different from mine. However, that does not necessarily mean that the current mass is cancer. They likely won't know for sure until they do surgery and see what the frozen section shows. My frozen section was benign and my surgeon actually waited for the results but then proceeded to remove my organs anyway.

I don't understand why the enlarged ovary would prohibit having another child. The mass is the reason it is enlarged. But women can and do get pregnant with ovarian cysts or other types of growths. If that mass is benign, your wife should not need to lose her ovary. Of course, she may choose to have it removed anyway due to her history.

If you decide to seek a second opinion, it would be a good idea to get all your wife's medical records pertaining to the ovary removal - the surgical / operative report, pathology report, gynecology and oncology appointment documentation / notes, all records related to chemo, etc. The first two would be particularly helpful to a second opinion doctor in determining how to proceed.

Hope this helps! Keep us posted.
1 Comments
My wife underwent surgery by gyn-oncologist and had her left ovary also removed along with the uterus, omentum, peritoneum, fallopian tubes etc. The result of pathology suggest grade 2c (clinical staging) and 3a pathological staging. Doctor (medical-oncologist) has suggested 2nd line chemotherapy with XELOX regimen (a combination of Oxaliplatin given as infusion and Capecitabine given as tablets in 8 cycles, where each cycle is repeated after 3 weeks). Usually this regimen is given to colon cancer advance stage cases. The nature of malignancy is of mucinous adenocarcinoma of intestinal type, and that's the reason they want to try out with these medicines. Are you familiar with this Xelox regimen for ovarian cancer cases?
667078 tn?1316000935
I am not familiar with Xelox. It sounds reasonable. She must be in shock, scared, and mourning the loss of her organs. I cried a lot after surgery.  I still had hope they would get in there and it would not be as bad as they said it was. Oxaliplatin is a platinum based chemo which is normal. If there is any questions I can answer or if she needs support I am here.

Alex
1 Comments
Dear Alex,
She was about to start with Xelox chemotherapy today. However, yesterday, doctors gave us a shocking news. The have looked at her post-surgery CT scan report, and they have found a lymph node in the pelvic area which has grown in size from the normal. Doctors suspect this could be shaping up as tumour again.

They have suggested two options:
1) To perform another surgery next week and take that lymph node out. And then start chemotherapy after 3 weeks of the surgery.

2) To go Chemotherapy first (Xelox) and after 2 cycles, re-examine if the lymph node shrinks. And then perform the surgery.
To me option 1) looks more logical.

But this news was too much too soon to makeup a clear mind about which options to choose from. As we did not expect that after a surgery 6 weeks ago (29 january 2016) with abdominal hysterectomy (removal of left ovary, uterus, omentum, fallopian tube etc) , there  will be again a growth in size of lymph node in the pelvic area. The doctors (a team of Gynae-Oncologists) are also shocked to see such an aggressive growth of these mucenous type adenocaricinoma.
They prefer to go for surgical removal of the lymph node. However, they are not giving an assurance if this won't recur even after surgery. It is making us worried and giving us a feeling of helplessness. We are based in the Netherlands. And the Doctors are among the best in Ovarian cancer treatments in the country. Are there places or doctors where we should go for additional opinions? We have to decide early next week, and also I think it is better to go for another surgery first?

667078 tn?1316000935
I have had about five lymph nodes involved. I have had them for 4 years now. It is very common. This cancer has usually spread beyond the female organs by the time it is found. Some people think you take the female organs and have chemo and that is the end of it. For some lucky women that is the case. But for most of us it is not.My lymph nodes have shrunk on certain chemos. This is called a chronic cancer. Most women are treated their whole lives.

I know this is a shock. I would do what the doctor suggests. I am sorry you and your mother have to go through this.

Alex
667078 tn?1316000935
I met your wife sorry.
Avatar universal
Dear Alex,

I really wish for your good health and ease in your treatment. You have been going through all this but your strength to fight back is an inspiration for many in the same boat. I pray for you and keep you in my thoughts.

My wife has started with her Chemotherapy  (Xelox regimen) yesterday. Doctors decided to go for chemo instead of surgery. In your case, was it not a suggestion through Doctors to remove your lymph nodes surgically? Is it possible to connect with you via Facebook?

Best regards

667078 tn?1316000935
No the two places I have cancer the spleen and lymph nodes could be removed but they do not think it will not help. They said the cancer will just spread. Good luck to your wife. I have never been on Xelox so I do not know the side effects. I will think about the facebook.

Alex
2 Comments
Dear Alex,
Hope you are doing well, May the source of power and blessings be with you to overcome your hardship.
Concerning my wife's recent CT scan report, done after her 2 cycles of Xelox regimen, shows further growth of "paraaortic lymph node" from 3.1 cm in early February to 3.5 cm now in April. Her Doctors is plannig to change the chemo medicines to "CARBOPLATIN-TAXOL" again. This chemo regimen as given to her in her first line chemotherapy 4 years ago, when she was first diagnosed with the Ovarian Cancer.
Are there any chemo medicines in your knowledge that work on "mucenous type of adenocarcinoma" of Ovary?

Best regards
They are using the right one. I am sorry it is hard. The only other option would be an immuno therapy trial.
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