Hello All: I have just discovered this site and this... - OvaCare

OvaCare

2,028 members1,116 posts

Hello All

HogwartsDK profile image
10 Replies

I have just discovered this site and this is my first post attempt! I was recently diagnosed with Stage 1. I had a large cyst spotted by my GP, quickly had Ultrasound, CT and MRI. Was referred to oncologist which frightened the life out of me! They decided on conservative removal of Ovary and cyst so had that surgery in August. They did biopsy and that showed up cancer cells which was again very frightening however after review of all scans the oncologist said "there is no evidence that it has spread outside of the removed ovary" and he had said that all looked ok after first surgery too. I am now waiting for second surgery for full hysterectomy and removal of other ovary which will be followed by 6 rounds of Chemo! To say this is a rollercoaster is the understatement of the decade!! I have never experienced emotional upset like it! I recently lost my mam and my sis is just at the end of her treatment for breast cancer so lets just say 2015 has definitely not being my year!

BUT while I have bad days and cry regularly I consider myself one of the lucky ones! I am surrounded by good people both my family, friends and work colleagues as well as the medical professionals and have decided that I cannot and will not let it get me down!

Embarking on what is likely to be induced menopause and Chemo at the same time is daunting to say the least and I would welcome any suggestions as to how to cope with this! I am particularly interested in the nutritional side of things. I started having 1-2 green smoothies a day about 2-3 weeks ago and find them great but any other suggestions gratefully received.

Onwards and Upwards

:)

Written by
HogwartsDK profile image
HogwartsDK
To view profiles and participate in discussions please or .
Read more about...
10 Replies

Hi there, welcome to the site. I am sure you are in shock, I remember back to the time when I had surgeries. But actually found the second one better than the first, It is a scary place to be right now but you are lucky to have good friends and colleagues. So in all 2015 has really been a horrible time for you. I am so sorry to read your story. I would suggest you contact a Cancer Support Group near you. If in Uk POPenny Brohn or Macmillan nurses might be of help. In Ireland, Ovacare, Arc Cancer Support House and your gynae liason nurse from the hospital. I wish you the best for your hysterectomy maybe the menopause is something you should mention to your gynae, he or she may be able to suggest meds you can have. Just remind them that you have lost a sister and mother to breast Cancer because it could affect their decision on hrt etc. Not too sure about this aspect as I was post menopausal when diagnosed. Green Juices and smoothies are okay you could add ginger root but dont take to replace food, use as part of your diet. Eat fish and vegetables and light exercise before your operation. Post op you have to take it easy for a few weeks at least. Best wishes

HogwartsDK profile image
HogwartsDK in reply to

Thanks Suzuki! It is very scary alright! I do add Ginger to the smoothie and they are an addition to diet rather than replacement. Going to up my fish intake and reduce, possibly eliminate red meat! Have a long list of questions for Gynae when I am called for surgery so hopefully he will give me some info on what I can expect from menopause! I am 45 so by all accounts it begins hours after surgery! Thanks again for response and hope you are feeling good!

thesilent1 profile image
thesilent1

Hi HogwartsDk, love your name and guess your a huge fan lol.

I was 53 and hadn't gone through menopause when I had surgery. The hot flushes were tough to deal with. A GP friend witnessed me take one within minutes of having a cup of tea and she advised me NO caffeine. If I wanted tea, herbal, green or decaffeinated. I started drinking decaffinated green tea, took a while to acquire a taste for it but now I can't imagine drinking anything else. I still get hot flushes but nowhere near as bad. The first hot flush I experienced was whilst undergoing chemotherapy, my daughter was with me, we thought I was taking a reaction so buzzed for nurse, they swung into action, Dr on scene immediately and it was she that told me, no, your having a hot flush lol.

Good luck with surgery and chemo. Keep on the forum as you may well have questions and the ladies here are a great help.

PS: eat OK ng fresh pineapple chunks helps to take that metallic taste away for a short while when on chemo, drink lots of water and try to keep your bowels regular.

Ann x

HogwartsDK profile image
HogwartsDK in reply to thesilent1

Thanks a million Ann! I love pineapple so that's a great tip! I am a big fan of HP and went to Harry Potter World in Orlando last year it was amazing and I would highly recommend! I have been doing a lot of reading around nutrition and have been increasing my exercise and rebalancing my diet in preparation for surgery and chemo so hopefully that will stand to me! Thanks again for your words of wisdom and I hope you are well now.

Dee

smiffinch profile image
smiffinch

I hope you don't mind me asking... when did they tell you it was cancer? After the biopsy, or did you have the CA125 blood test prior to the surgery? I have 2 large cysts on one ovary and have been bleeding heavily for 6 months (stopped now as finally been told to take norethisterone continuously) but nobody seems in any hurry to investigate further. Cysts were spotted 5 weeks ago and I'm awaiting an MRI scan but have no idea when it will be. I am also 45. My CA125 blood test was normal but I read that it is not always reliable.

Sorry to hijack your thread, wishing you lots of luck xx

HogwartsDK profile image
HogwartsDK

Hello smiffinch and its not a bother at all you are not hijacking! I did have the CA125 test before surgery and my levels were normal. All my other bloods were normal too and I had a CT and an MRI. After the scans the Oncologist told me that there was a large cyst (mine was 16cm X 14cm) and that there were "nodules" on the cyst so while it looked like it was mostly fluid there were some cells that were questionable. He did explain the whole gambit of possibilities to me that it may be nothing or it may be borderline cells or they may be malignant so in fairness to him I was aware going into surgery that there was a possibility that the cells were cancer but they were very positive throughout. The team decided that I was to be treated conservatively and that the ovary and cyst were to be removed in the first instance. He did explain that there was no certainty that this would be the end of it until they had the results of the histology/biopsy so I went into the surgery with my eyes open knowing that it was possible that I would have to have further surgery but that was my decision and I am still glad I made it.

About 2 weeks after surgery, which was done laparscopically and from which I recovered quiet quickly and didn't find too bad at all, the Consultant rang and asked me to come in. To be honest I kind of guessed what he was going to say and that's exactly what he did say, there were cancer cells in the biopsy. He said that they looked over all the scans again and that quote "there is no evidence that the cells have spread outside of the ovary". He had told me after surgery that he had a look around when he was in there and that everything looked ok and that the other ovary looked healthy but because the ovary was positive for cancer cells the suggested course of treatment was removal of the other ovary and a hysterectomy. The team also suggested a course of chemo as a preventative measure and I had already read that that was likely if the tests came back positive so wasn't very surprised. Just this morning I got my date for the second surgery so its full steam ahead now!

As the doctor said at the time and again I quote "this is shite, but it could be a lot worse" and that's the way I am looking at it! I am so empathetic to you as you sound like you are where I was a few weeks ago and it is scary but I feel you have to put your trust in the medical professionals while at the same time asking the questions that need to be asked. However, the waiting is tortuous and you do seem to spend an awful lot of time waiting! My only advice other than asking any question that you need to ask is to try and occupy yourself in that waiting period! I have taken to walking twice a day, reading everything I can get my hands on both fiction and about cancer/nutrition/chemo etc and I am more inclined now to say yes to any invite from the Theatre to table quizzes! Keeping occupied will keep you sane!!!!

I hope this helps and more often than not cysts are just that, cysts, so fingers crossed for you and keep in touch!

Dee

smiffinch profile image
smiffinch

Thank you, very kind of you to reply.

I have only seen the gynae consultant once and that was before I had an ultrasound which identified the cysts. She doesn't want to see me again until I've had the MRI. I have so many questions and no one to ask, and Googling just makes me a bit paranoid!

I keep going back to the GP as the bleeding has made me anaemic but as it's always a different GP communication can be difficult. Now I'm on a strong hormonal drug to stop the bleeding, it works but makes me feel like I have constant PMT ;)

Fingers crossed I will have the cysts assessed and removed soon, will keep you posted.

Good luck with your hysterectomy

Lydia

HogwartsDK profile image
HogwartsDK

No bother at all! I should have said in my last post I am very lucky as not only do I have a fantastic GP who has been a rock since my diagnosis I also accidently, through someone at work, found someone who had almost the same diagnosis and is at the end of her Chemo so she has been a great help with the questions. I have taken to writing everything down aswell and I was never one for journals but I am sticking to this one and I find it very therapeutic! Any time you have a question write it down and bring that with you the next time you see the consultant. Try not to worry too much which I definitely know from experience is easier said than done!

I know its hard to resist but I made a conscious decision not to Google as it was just driving me mad!!!

Good Luck

Dee

smiffinch profile image
smiffinch

Hi there, I just wanted to update you on my situation and wish you all the best with your treatment.

I had the MRI and I got the results back yesterday. It is ok - the 2 cysts that I have seem to have got smaller since the ultrasound and are benign in appearance so they are not going to operate at this point.

Now I just have to sort the bleeding out, which can be done either through drugs or an endometrial ablation.

I am very relieved of course, as it's been a lot of waiting around (and worrying) before the MRI and since the MRI to get the results.

Wishing you all the best with your operation and treatment.

Lydia

HogwartsDK profile image
HogwartsDK in reply to smiffinch

That's fantastic news smiffinch you must be very relieved and rightly so!!! The waiting is definately the worst your mind is your enemy if you let it when waiting around for results . They will sort the bleeding out for you and you will be fine! Congrats again and enjoy the rest of your weekend with your peace of mind back!!! D

You may also like...

Hello!

weeks ago. Three more rounds of chemo before surgery to remove womb, ovaries and fallopian tubes...

Avastin and aching all over!

last 3 carbo/taxol chemo session at the end of 2015 and since January I have just had infusions of...

Carboplatin and Taxol - very scared!

hospital for removing everything what they could. It turned out that both my ovaries had cancer...

Choosing not to have more chemo

believes chemo will be suggested. He also confirmed that in his opinion ALL the cancerous areas had...

Hello Lovely Ladies!!!!