Refusing follow-up surgery after removal of mucinous borderline ovarian tumour

hi, i dont know if this forum is for women only, my apologies for posting if it is as i am a man.

my girlfriend has recently had an ovarian tumour removed which was analysed and found to be mucinous and of borderline malignancy. She has been recommended futher surgery to remove her appendix and omentum, as well as a cyst from the other ovary.

She was already strongly considering not taking the initial surgery and took advice from other doctors as well as alternative healers before deciding to go ahead with it. She is more interested in herbal medicine, nutrition, and other alternative therapies.

She is now considering refusing the further surgery, feeling that her body has been already violated enough, that the techniques used are too agressive, and that there is not enough dialogue between patient and doctor in the conventional medical system.

I will of course support her with whatever decision she takes but would like to inform ourselves as much as possible.

I understand part of the reason for removal of the appendix could be a suspicion that the ovarian tumour originated from a primary tumour in the appendix, since mucinous tumours have characteristics similar to tumours in the digestive system. However, since she has a family history of ovarian and breast tumours, I would like to know if it is less likely that the tumour originated in the digestive system?

I would like to hear from anyone who has refused surgery or has experience with alternative therapies in similar situations.

You may ask why I am asking and why she does not post here herself. We have limited time to make a decision (the surgery would normally take place next week) and she is talking to many friends and therapists. I am doing all I can to try to inform ourselves as best as possible and get a wide variety of opinions. We live in germany and german is not my first language, i find it more diffiulct to communicate with the people around, and feel here is a good place for me to ask, i dont really know what else to do.

12 Replies

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  • Welcome to our friendship group. Men are of course part of the group and it's good you've found us. Hopefully you'll get lots of support and your contributions will be interesting and helpful to us.

    Hopefully you're happy to have open and honest feedback from your post. In the four years since being diagnosed with ovarian cancer I have read stories of women who've beaten the disease through diet, supplements and so on - but these are the very much the minority and as the disease is idiosyncratic there's no way of knowing whether women who achieve this success would have done so anyway.

    If your girlfriend has other members of the family who have had ovarian, breast or prostate cancer they may well want to have a blood test which analyses the BRCA gene. 20% of women with ovarian cancer have a mutated BRCA gene and this opens up new and hopeful treatment options. However, as I understand it the mucinous type of tumour is not usually associated with the faulty BRCA gene. Sorry that's a bit contradictory but I'm trying to convey information I've gleaned quite recently about the BRCA gene.

    I think it's wonderful to consider holistic therapies and there's a great centre here in England that runs courses free-of-charge which look at healing, spiritual wellbeing, meditation and nutrition as part of a broader package of treatments. However, they do not suggest these therapies and treatments instead of conventional treatment but more to compliment them and help women address negative feelings about cancer, treatments and surgery.

    You are in one of the best countries in Europe for the treatment of ovarian cancer but bear in mind if it is only diagnosed at a late stage the options are more about managing the cancer rather than curing it.

    I do understand your girlfriend's feelings that she doesn't want more surgery. I have reached the stage when I'm not sure whether I want more invasive treatments that seem to wear us down whilst managing the cancer. It is, after all, her body and her cancer. It's good you're doing all you can to support her and gain as much information and insight as possible.

    I'll look forward to hearing how you both get on. xx Annie

  • Hi There,

    I really feel it is not my place to advise you about the decision your girlfriend needs to make as I am not a qualified Oncologist nor do I have any medical qualifications or experience other than the treatment and surgical procedures I have had to date. What I can do is tell you my story and how I feel about what has happened to me. I was diagnosed in 2011 with Stage 3c Ovarian Cancer. I have had a full and total hysterectomy with removal of Omentum. I have had 6 sessions of taxol and Carboplatium , 6 sessions of Gemcitabine , Carboplatium and Avastin and 18 sessions of Avastin, 6 sessions of Carboplatium and Etoposide . I am now 43 years old and have survived 4 years. I have lost my hair twice, my eyebrows and eye lashes once.

    How is my health? Good. I am currently 4 months over my last chemo and not due back to the Oncologist until July.

    Did my health suffer? Yes, but I can live with it.

    How is my mental health? Good.

    Would I do it all over again? Yes, without a shadow of hesitation.

    Would I have more surgery if needed? Yes.

    Do I think I would be alive now without those treatments? No.

    So that is me and a rather short version of my story and I must add my Cancer was not Borderline. There are plenty of women on here that have had a Borderline diagnosis I am sure they will contact you.

    Finally the only red flag I see in your post is the word 'alternative' , I can understand complimentary but the word alternative does somewhat frighten me. I wish you both the best in whatever decision your girlfriend makes. You can always come here to share or ask questions. We'll be here for you.

    Best wishes

    Trish

  • Hello there ... I really feel for you both. In my case I have struggled with alternative as opposed to mainstream treatment ever since my first diagnosis of stage 3/4 OC in August 2013. For me they wanted to do 3xchemo then the big op then 3xchemo. I had always been totally against chemo but my OC had gone so far by the time it was diagnosed I felt I probably needed the 'big guns' and went along with the whole thing. (Op was removal of ovaries, tubes, womb, most of omentum). The op was obviously massive but I coped and afterward I really didn't 'feel' any different ... apart from a big scar down my front! I don't think I ever thought about refusing the surgery though as I really wanted to tumours gone. After my treatment I was all clear and started a bit of a half hearted alternative approach, taking supplements etc. but unfortunately the beast came back again in Oct last year, so I came back to the chemo route. I almost gave it up after the first session (Gemcitabine/Carbo) as it was so debilitating to me but my Oncologist came to a compromise with me to just have the Carbo (which I had a massive allergic reaction to) and am now on Cisplatin ... which is really rough on your body esp Kidneys. It is such a hard decision to make whether to go mainstream or alternative - lots of fear factors involved - and I can understand your girlfriend's decision entirely. The mainstream treatment while managing to keep the cancer under control for some time is a violation and complete degradation of other body systems. All I can suggest is that you do as you are doing and get plenty of info on her own case as everyone is different. If it helps, I have been using supplements etc alongside the mainstream treatment I have received - albeit against the advice of the doctors - so maybe your girlfriend could consider the complementary medicine approach if she goes the mainstream medicine route. There is a good book called 'Shattering the Cancer Myth' by Katrina Ellis that you might like to read ... loads of info in there about cancers/treatments/supplements etc. Good luck xxxx

  • Hi there

    It is indeed a difficult decision to make and although I don't feel I can offer advice I can tell you what happened to me. I was diagnosed with a borderline mucinous tumour after having an ovary removed. I was told by my consultant that it wasn't cancer but borderline and was unlikely to return. I was offered monitoring with scans for the following 5 years , however I was also offered surgery if I wanted but he was definetly keener to go down the scan route. However if it had been suggested I needed further surgery I would have followed the advice of my consultant too. My tumour had been caught early and was stage 1 so it may be different for your girlfriend depending on what stage she has been classified at. I didn't follow the scan route in the end due to unforeseen circumstances but it does seem that each of us have different pathways depending on the stage and type of tumour that is found. I don't know if you have looked at the Ovacome website but there was a leaflet on Borderline tumours on there which may offer you more information and advice.

    Sue x

  • My first debulking was borderline, a year later after total hysterectomy it was malignant. I have had recurrences and had to have more chemo, three regimes in fact. Also I had radiotheraphy. I dont believe for one moment that tumours can be reduced by natural products. I know your girlfriend feels her body has been attacked enough by surgeons but if the surgeons have recommended further surgery and treatment, go for it. Your girlfriend is young and has a lot of living to do. I dont regret going with the oncologists and gynaes decision one bit, because I know the treatment has given me several chances to get on with my life. If you go with the flow, it is a lot easier, but that is my opinion.

  • I am a healthcare professional and realise now that most if not all of my colleagues totally underestimate the trauma that surgery , shock diagnoses and imperfect consultations have on patients.

    Having said that I had a borderline tumour removed 5 years ago and have had some of my best life experiences since then. If your girlfriend has a recurrence or another borderline tumour in her other ovary , then this will not go away, or is unlikely to. We have had a number of ladies on here whose borderline tumours ruptured and some are sadly no longer with us. Doctors don't recommend second surgeries lightly...but having had one myself , this is again extremely traumatic and I can totally understand her stance. It is also.so.difficult dealing with anotherhealthcare system , different culture and values let alone a different language.

    You can only do what my husband did so well...wrap her up in love and affection. She can always change her mind in future.

    So sorry that you are dealing with this xxx

  • I had a Borderline mucinous tumour removed last summer.

    It weighed 2 kilos and was taking over most of my abdomen, causing stress incontinence, breathlessness and digestive problems. I had to wear Tena lady pads all the time. I couldn't turn over in bed without coughing and I lost 2 stones through being unable to eat a full meal.

    This is what would have happened to your girl friend if she had not had the initial surgery. Borderline tumours are slow-growing but no amount of nutrition or alternative therapies stops them in their tracks. Eventually, my tumour would have caused a bowel obstruction or stopped my kidneys working. Without emergency surgery at that point, the result would have been fatal.

    I do understand her reluctance to have more surgery. It's the last thing anyone wants. I'm a gold medallist in burying my head in the sand. But she is so lucky to have Borderline and not the Real Thing, particularly with her family history. I'm sure you will have googled and looked at the statistics. I was told that I have as much chance of further problems as of being hit by a meteorite. I do know about the appendix connection, but my path reports were clear that it was not a GI secondary.

    But I had both ovaries and my omentum removed and a hysterectomy. I was post-menopausal and the chances of ov-ca at my age are much greater, so they took a radical approach.

    My surgeon told me that what happens to one ovary tends to happen to the other, which is why they want to look at the second cyst and remove it. I don't know how old your girlfriend is, but they will do everything they can to preserve her fertility. The sooner they remove the cyst, the more chance there is of keeping the second ovary. Some Borderlines, tho' I think usually Serous, do turn into cancer and the omentum is often the first place they spread to.

    I wish I could take a softer approach, but, truly, this is not something to mess around with. If this is what the doctors recommend, and I'm sure a second opinion would be the same, your girlfriend should follow their advice.

    Best wishes to you both - sometimes I think it's harder to be the one who supports the patient than the patient herself.

  • It has to be your girlfriend's decision however if it was me I'd opt for whatever the medical professionals were offering me.

    With regard to alternative therapies, if it was as simple as that to cure this horrible disease, do you not think we would all be doing it and the NHS would be opting to spend money on natural therapies for us as opposed to the thousands of pounds for the surgery each indivual receives and then the cost of chemotherapy etc on top!

    Complimentary therapies would be fine but they won't get rid of the cancer, nor do I believe will alternative therapies. She also needs to be careful of quacks out there only too willing to rip someone suffering from cancer off.

    God bless. Ann

  • Hi, I was also diagnosed with a borderline Mucinous tumour following the removal of a 'cyst' which when re examined by my Oncology team was found to have invasive grade 1 cells as well. My understanding from discussions with Oncologists is that the origin of mucinous tumours can be determined by histology analysis. Some may originate in ovaries & others elsewhere x

  • You may want to check this book on herbal remedies: "Herbal medicine, healing and cancer" by Donald R. Yance.

    The natural treatments work very much to reestablish the proper functions of the body by cleaning(detox) it and feeding with the building block needed for proper function and to stimulate the immune system that at the end of the day will clear the cancer.

    4 years ago I had a mucinous as well as a different kind that burst at opperation. At the time I read in medical books that mucinous cancer originates in the appendix if it is found in both ovaries. My puzzle at the time was that I had no appendix (was removed about 30 years before) and also the cancer was only in one ovary so most likely originated in the ovary. I had no chemo, but lots of detox and supplements and now herbs and is all good at the moment.

    I can relate to your girl friend worries, but at the end of the day this road is hard because no one really can tell what is better to do in your girl friend case, whether to have the next operation or not. From natural treatments point of view may not need to have it, from medical treatment point of view may need it. Anyway whether she will go for the operation or not the natural treatments still are to be used to bring the body to a higher platform to battle the disease better.

  • Thank you so much everyone for all your replies! It is great to feel that so many people are thinking of us and taking the time to write such replies with their personal experiences and a lot of advice. My girlfriend has read this all and it has definately helped with making a decision.

    She has decided to go ahead with the surgery but is prosponing it for a couple of weeks as she feels not ready. I hope that things do not develop in that time.

    She is also drinking a lot of calendula and yarrow tea, swedish bitters, eating lots of beans and no carbs, doing special excercises, and seeing some healer people.

    Once again many thanks, its great that there is such a supportive community. Wishing you all the best.

  • Your English is ausgezeichnet!

    I'm glad that all the good advice has helped her to a decision and it sounds like a good compromise.

    In my experience: 4 lots of surgery in the last 6 years, it partly depends on how the surgery was done. If it is laparascopic, I found this very tolerable. Open surgery is much more difficult.

    Building up strength through complementary approaches is a good idea, and if she is offered further treatment, like chemotherapy, in the future, even more so. This is not generally well exploited, I think, in hospitals here. There is a very helpful resource which she may be interested in.

    mskcc.org/cancer-care/integ...

    Like others, I would tend to follow the advice of the medical people, especially if there is a family picture. More seems not to be known about this disease, than is known, but more is being learned all the time.

    Best wishes to you both - stay strong!

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