Stage 1A Mucinous Borderline Ovarian Tumor, 27 ... - My Ovacome

My Ovacome

15,888 members18,445 posts

Stage 1A Mucinous Borderline Ovarian Tumor, 27 and don't know what to do.

I have 4 kids, so that part of my life is over. I am incredibly happily married and Id never dream of remarrying and wanting more children. That chapter has closed. During my c-section in Oct. 2018 they removed a 20cm mass which came back Mucinous Borderline Ovarian Tumor and they staged it 1A (but I worry because an OB did the surgery, not an oncologist, so idk if they really checked surrounding tissue for cancerous cells) They removed the mass, ovary, and both fallopian tubes. They have given me two options.

1. Wait and watch every 3 months

2. Total hysterectomy, along with removal of appendix

Im so scared of menopause but I am also terrified of the waiting around for a reassurance. I have terrible heavy periods, painful sex, and bowel movements, so a hysterectomy is sort of appealing taking my other issues into consideration.

My question is:

Has anyone around my age been through this same sitaution with a MUCINOUS BOT?

Are you receiving Hormone treatment?

How are you coping with the decision fora hysterectomy?

If you didnt have the hysterectomy, did you have a reassurance? if so, how many years till it showed up?

Im young, and scared and have 4 beautiful children and an amazing husband that I can't fathom leaving behind so young.

18 Replies

Hello Boa26

Sorry to hear that you are in this position. I don’t know much about borderline but I can tell you that it is always a gynae surgeon that does the op- so I would put that worry out of your mind.

You are facing some tricky choices but this means that they are looking for optimum treatment for you. There are people on this forum that can tell you more about borderline but I would suggest ringing the Ovacome nurse led helpline on Monday. Also don’t forget you can ask for a second opinion from a specialist in borderline OC so that you get the best advice going xx

Akoma111 profile image
Akoma111 in reply to Lyndy

Hi Lyndy,

Would you mind sharing the Ovacome help line phone number? I Didn’t realize that was avail and I think it would be really helpful to talk to someone.

Thx so much 🙏

I replied to an earlier post for someone else as my daughter had ovarian cancer 1C. She did have an gynecologist oncologist and he did a complete Debulking. She has not had a hard time with the hysterectomy but the chemo was brutal. I am now 66 and had a complete hysterectomy at age 33 and have never regretted a single day of it. Hope this helps

in reply to Simplicity1

It absolutely helps! Thank you so much for the reply. Do you mind me asking why you had yours at 33? And we're you able to do hormone treatment?

Simplicity1 profile image
Simplicity1 in reply to

I had severe endometriosis from age 13. Blessed to have 3 beautiful children which had been said was doubtful. I was able to have HRT for a while. I often Wonder if I had not had the hysterectomy if I would have had ovarian cancer. My grandmother had uterine cancer🤔

I had a similar size Mucinous Borderline removed 4 years ago, along with uterus and the other ovary. (Have a look at my profile for details.) I was post menopause, so didn't need them any more. I had a gynaeoncologist doing the surgery, because I was at a higher risk of cancer due to my age and my local hospital referred me to a specialist unit. Are you seeing a gynaeoncologist now?

I can't help with questions about coping with a surgical menopause, but my surgeon did say that what happens to one ovary tends to happen to the other one. And if you already have menstrual problems, I'd rather have a total hysterectomy than endless monitoring. Your doctor would be able to tell you the statistics for recurrence. Most Borderlines are still Borderlines if they come back, but there's a small chance of them coming back as low grade cancer.

Re surgery, I had a vertical incision, full abdominal, and was still only in hospital for 3 nights. I could do everything I needed to do for myself but you will need to do a lot of resting and won't be able to pick up small children for some time. But they may be able to do a less invasive operation for you?

Hope this helps. It's not as straightforward for you as for me but there are a lot of years ahead of you to be worrying about it coming back.

Best wishes,

Sue

Hi

I thought you may find this useful it’s very positive and I think explains your cancer well

cancerresearchuk.org/about-...

Best of luck

LA xx

Hi Boa. That's rough, being hit with OC at your age. I was almost 20 years older when I got diagnosed with borderline OC, but I would still say I'd at least consider the surgery, if it was to offer the best possible chance to see your kids grow up.

I'm with you though on the desire for expert treatment, so maybe you can get a second opinion in a large gyn. cancer center where they have lots of experience with borderline tumours and can offer valuable input? And if you go for the hysterectomy, you'd want to have it in a large cancer center too.

Surgical menopause is noticeable, but I didn't find it unbearable.

All the best. Maus

in reply to Maus123

Thank you so much! My husband is incredibly supportive and tells me "there is nothing menopause can do you that I won't be right there beside you to help you get through" I agree, if it gives me the best odds of seeing my kids grow up. Its without question what I should do. It does not "cure" me.. but it will better my odds. I am now leaning towards the total hysterectomy. I know it won't be easy, and I may have days where I regret it.

Do you feel that life style changes such as diet and exercise help with the effects of menopause?

Maus123 profile image
Maus123 in reply to

To be honest I didn't make any changes. Just waited about 3 months for the most severe effects (nightsweats) to get down to an almost unnoticeable level on their own :) .

Hi

I'm not much help as I'd already had the menopause when I got the cancer but I'd like to mention that it's not a done deal that anyone has problems with the menopause. I didn't have any problems at all other than hot flushes. They happened maybe once a day and felt much like when you open the oven door and get that sudden blast of heat? but only lasted maybe half a minute. At the time , at work , there were several women having the menopause and we were all the same - a few hot flushes and that was it. Obviously surgical menopause is a sudden thing but I haven't heard that it's a whole lot worse than natural menopause.... and then there's hormone replacement if you need it.

At the operation I had hysterectomy, ovaries, tubes, appendix and omentum removed and was fine. Home in a couple of days. Granted I haven't got small children to struggle with but I haven't got a husband either and managed fine with a bit of common sense.

Good luck whatever you decide

Lynn

xx

Thank you so much for your reply! What type of Cancer did you have? and how long have you been NED? any reaccurances?

The first sentences in LA's link say: ' Borderline ovarian tumours are abnormal cells that form in the tissue covering the ovary.

They are not cancer and are usually cured with surgery'.

It used to be controversial whether Borderlines should be classified as cancer or not, but, if CancerResearchUK is saying this, I think it must now be the official view.

There will be people on this site who are unlucky enough to be among the very few whose Borderlines have recurred as low grade cancer, but the overwhelming majority will be 'cured by surgery'.

I know it sounds as if I'm just nit-picking about terminology, but, speaking as a Mucinous Borderline 1c, I find life a lot less worrying if I go by what my gynaeoncologist said to me. 'It's a small percentage of a small percentage. You've got more chance of being run over by a London bus'. As far as I'm concerned, that's a lot more reassuring than thinking of myself as a cancer survivor and living the rest of my life with the sword of Damocles dangling over my head. But you might feel differently?

However, this was after I'd had a TAH and BSO. As I said above, in your position, I'd choose surgery over monitoring. I've had 4 years of blood tests and scans and, however brilliant my prognosis, I still feel edgy when the date comes round.

Thank you so much! Your reply honestly does bring me peace ❤️ I am getting one more opinion from the Mayo Clinic honestly just to confirm it is stage 1A and going to TRY the wait and watch approach till closer to 32-35 years old, then will go forth with my hysterectomy. As days past and more research I do, I really have come to a better place with it all. Thank you from the bottom of my heart for your reply.

Hello! My mass was also 20cm and was thought to be Borderline but then after the biopsy they found invasive mucinous cancer cells. Stage 1A, Grade 2 and I was 33 years old. At the time of my surgery, they only removed one ovary and left everything else. After the biopsy came back as cancer, my oncologist ultimately decided to leave me alone and monitor ever 6 months. After follow up tests, she was confident that they removed all the badness with the original surgery. She also explained that the risks of removing the other ovary and putting me in surgical early menopause at my age (bone and heart diseases) or putting me through chemo (mucinous ovarian cancer has shown to be resistant to chemo) outweighed the risks of the cancer still being in me and having a reoccurrence. I have consulted with many women in my same situation in a Facebook group for Mucinous Ovarian Cancer and this seems like the consistent process (ie. wait and see approach) for people who are younger even tho there is very little research about this type unfortunately.

cbulha profile image
cbulha in reply to Erinosaurus

Hi there!

I just read your post here and wanted to share that in February this year I was diagnosed in with mOC stage 1A grade 3 (I'm now 40 years old).

I had a benign cyst in my left ovary since I was 20. I monitored regularly, but doctors said there was no need to remove as it was benign and not growing.

After having my second child, at 38, the cyst began to grow more. In June 2018 I had a check-up and the scan confirmed benign 'endometrioma' (the cyst was 7cm). In December 2018 I had severe abdominal pain during menstruation and at A&E doctor could clearly see from simple scan that something was wrong.

The benign cyst had mutated and it was confirmed by MRI the suspicion of malignancy. It was now 14cm; it grew twice its size in 6 months.

I was so fortunate that I already had 2 children (5 and 2 years old), before the surgery in February this year.

I felt more reassured by having the surgery and full removal.

I had total hysterectomy, full debulking and I was initially advised to start chemotherapy (Oxaliplatin and Capecitabine - for GI cancers, as mOC respond better to this treatment).

The surgery was almost 3 months ago, I recovered slowly but steadily and physically I feel great now! I haven't had any premenopausal symptoms yet and no hormonal treatment yet, until the decision re chemotherapy treatment is made.

I have posted on the forum a question to ask for views on whether I should carry on with treatment, since my oncologist found a new article (revised) where it states adjuvant chemotherapy is only advised for stages 1C or 1A that is infiltrative (as opposed to mine, which was deemed to be expansile, according to histology report).

I'm trying to gather as much information as possible, I've requested a second medical opinion and a revision of the biopsy, so I can make a decision....

The debate with your doctor (s) is extremely important and if are uncertain because it's not a standard case and even doctors are not in agreement, you can ask for a second medical opinion.

If none of these are conclusive, then I would advise you to listen to what your friends and family think and then make a decision that you feel it's the right one for you.

Take care and keep in touch.

Best wishes,

Claudia

Hi Boa, I'm going through something quite similar. I'm 29 and 6 years ago I had my right ovary removed due to a benign dermoid cyst. I am currently going through diagnosis for a tumour on my remaining ovary which is looking more likely to be cancerous so I am facing hysterectomy and ovary removal which would put me in the menopause.

I have thought about it a lot and my thoughts are that even if they say they could possibly save the ovary I don't know if I want them to. The fact I've already had two tumours means I'm so much more likely to have more, I don't want to have to go though this every few years. I have kids and I can deal with not having any more and I would take steps to counteract the effects of early menopause. It definitely has its risks but I do think it probably has more benefits.

Obviously every case is different and if they genuinely feel they have got it all and it's very unlikely to come back then you may be better just staying as you are, I hope you are ok, if you need to talk feel free to message me 🙂 xxxx

Hi I am new to this site and have never posted on a forum before but have just read your post, sorry to hear your story and at such a young age but was in a similar situation last year, I am 36 and was pregnant on my 3rd child last year and was diagnosed with stage 1a ovarian cancer, I had a large cyst and ovary removed at 19 weeks pregnant and thankfully delivered a healthy baby boy last November. I had to meet with my consultant after and after advise from consultant and family members I opted for surgery and 5 weeks ago I had a hysterectomy with bilateral sapling - oophorectomy, appendectomy and washings (womb, other ovary, cervix, fallopian tubes, appendix and cells) The surgery was done through keyhole surgery and vaginally and I am recovering very well and pain wise and recovery was much better than I expected.

I was terrified of facing the menopause but after consulting with oncologist and gynaecologist I was put on HRT - estelle solo and this prevents any symptoms of the menopause and to be honest I don't feel any different now than I did before surgery.

It is a big decision and a personal decision and I wish you luck with you look with whatever you decide and if you have any further questions feel free to ask xx

You may also like...