I am new here. I found out end of August that I had a 17cm cyst on my left ovary. The MRI did not determine if the cyst was malignant or benign. My gynae-oncologist arranged for emergency surgery on the 6th September but during surgery it burst. I had my left ovary fallopian tube and the cyst removed. The results from the biopsy was that the cyst was cancerous being a moderately differentiated adencarcinoma. In other words the grading was two and in a stage 1C1 category so I’ve been told. The results from the pathology test were unusual and so to rule out that the cancer was not metastatic in the gastric area for example they arranged for a colonoscopy endoscopy and CT scan all which came back clear no signs of cancer
I then had a chat with my consultant who told me to consider if I want a hysterectomy we talked about my possibilities of wanting children which I would like as I am 32 and have no kids yet he also discussed the issues of me going through menopause early and told me to think about my choices. He arranged for fertility preservation which I am in the process of. I met with him this week and he said the results from the specialist meeting was to offer me adjuvant chemo I was then told to speak with an oncologist who arranges chemotherapy she has said they can offer me carboplatin with paclitaxel. I discussed with her about hair loss as this is something I feel I am going to struggle with immensely she has told me I will lose my hair on paclitaxel but possibly not on carboplatin she has given me the options to go with just one drug however advised both drugs are better. She also said I could seek a second opinion and an oncologist may advise differently she is only giving me her advice and said one drug would be under treating me. They seem to have parked the surgery aspect for now.
I believe it is a tricky one for me. The surgery removed the majority of cancer I believe however due to the surgical spill (stage 1C1) there may be cancer cells lurking that are going undetected and not seen in the colonoscopy endoscopy or CT scan my gynaecologist also said my markers have never been raised.
I guess what I’m asking or looking for is any feedback granted I know people may not have the answers for me or advice. I’m scared that I’m putting my body through chemo when the scans are showing everything is fine since surgery. I know there may be dorment cells and the chemo is a preventative measure but I’m terrified to do it and also in all honestly don’t want to have to lose my hair. It’s even harder as I’ve only just started my job a year in working frontline in an emergency service role, work are supportive as ever though. I wondered if anyone had any advice they could give me or if they’re in my position. I am leaning towards just the one drug but scared I am not educated medically enough to know if this is the right thing or not, these are likely to be questions for my doctor but I also wondered if anyone else could give me their thoughts it may help. I’ve got my next appointment to discuss what I’d like to do mid November
I’ve also been told that my right ovary could remain after chemo or could at least be discussed after chemo. I’m a little confused as the consultants themselves have said my case is a little tricky given the diagnosis. I should mention there is a long history of breast cancer in the family too so genetic testing will be done.
Any thoughts would be great
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sometimes it’s better when the decision is out of your hands🤔My situation was similar .17cmtumour that burst but difference being age, I was 65 my family obviously complete! I was diagnosed 1C3 so given full carbo taxol & 4yrs later still cancer free I’m very grateful. Lost my hair almost immediately but loved my wigs & got lots of compliments 🤗Hair grew back very quickly & was honestly the least of my worries. Give yourself the chance if life & enjoy every minute.Big hugs Dee X
I’m sorry you’ve had this diagnosis, Kscott. It’s good they didn’t pressure you in removing your uterus. Did they tell you what kind of cancer this is? Endometriosis associated? What histology? I think that would answer the question of how useful chemo would be and what drug. Also, consider using cold cap system to try to preserve your hair. Hugs.
Hi, so sorry you’ve had to join this club, but it’s a big help to be in contact with other ladies going through the same thing and you’ll get lots of good advice on here. I only recently got diagnosed and I’m much older than you but I’m having paclitaxel and carboplatin at the moment. I’ve had 3 sessions, so I’m half way through. I use the cold cap as, like you, I found the thought of losing my hair very distressing. So far so good, my hair has slightly thinned but no one would notice apart from me, I hope it’s going to continue this way for the rest of my treatments 🤞. I think it’s very important to have the treatment as this disease is a bugger and your health is the most important thing, but I totally understand how you feel. The cold cap does add a couple of hours onto each treatment but so far I think it’s well worth it. I saw one other lady who used the cold cap and she had all her hair but it had just thinned a bit on top. Just make sure you get a cap that fits really snug. Don’t hesitate to ask if you need any more advice. Sally x
Wanted to share I'm going on session 3 of Carbo/Taxol for a small recurrence in 2 lymph nodes after 22 months the abdominal biopsy came back negative because they were so small a blessing my oncologist wasn't convinced biopsied my clavicle showed up there same as original diagnosis low grade endometroid I had silent endometriosis your reply regarding the cold cap I could have written myself I am using it for the second time with the same results as you and the cap has to be snug I buy the slip on ear muffs from Amazon the gals put under the band yes a long day no one aside from my hairdresser would know the journey I'm going thru. Wanted to share with you.
Hi Saintgermain, yes I’m very pleased I’ve persevered with it, yes the first 15 mins are uncomfortable but after that you can’t feel anything. I’m lucky too as I’m not a person who feels the cold too much, probably because of all the hot flushes I now get since having my ovaries removed! So long as I have a jumper on I’m ok. Good luck going forward with everything. This isn’t a club anyone wants to be a member of but I’m glad I joined this forum 😊
Hello, I'm sorry to hear what you are going through. I was diagnosed with stage 1c2 (grade 2) ovarian cancer in October 2021 and the consultant and The Christie hospital both only recommended carboplatin to me. I am really surprised to hear they are suggesting paclitaxel as well. I could understand it if you were stage 3 but not for stage 1c1.
The day after my hysterectomy (before the pathology was known) the consultant however did say to me if it is stage 3 then I would also need paclitaxel.
If I were in your shoes I would ask for a second opinion to try to understand why they are recommending paclitaxel. If you don't want to ask for a second opinion then I would just have carboplatin. I had six rounds of carboplatin with one round every three weeks.
It is such a steep learning curve trying to process all this new information as well as coping with the shock of it all I do think there is a bit more detail to find out about your histology results which may help you in your decisions Could you ask your Consultant or Specialist Nurse what subtype of ovarian the histology showed? When they said adenocarcinoma what type is it? High grade serous? And could they explain what makes your case tricky?I also think it would help you to talk it all through using the Ovacome Helpline The number should be on this website It is also in the back of my mind that there is a special support group via Ovacome especially for those diagnosed at a younger age But I am not sure if i may have imagined that! Do ask Ovacome as if it exists it could provide some really valuable peer support Good Luck xx
Have you looked into the scalp cooling ? I had 6 rounds of carbo/pac and I used the cold cap. It was very successful and people I worked with did not even know I had chemo. I was also offered a wig that although I didn’t need it was helpful to know it was an option. You have a lot to think about but you may not lose your hair if you use the cap properly. If you cut your hair short and use the smallest cap it is more likely to work. Good luck. I was offered carbo only as I was worried about hair loss but I decided I needed to take all the options. I had a radical hysterectomy and then 6 chemos last year. The chemo is not as bad as you think it will be. Be positive and good luck!
Hi, I was a similar stage/grade but also has endometrial cancer too so had the full works.
I was also really in a quandary about the hair loss thing, and it was one of the few times I cried; but I went with the combination treatment as I knew if I had a recurrence, I’d always be thinking ‘what if’. Did I enjoy losing my hair-no (although the smooth legs and underarms are an unexpected bonus I won’t lie!) but it also wasn’t a fraction as bad as I’d built it up in my head.
If you’ve time though, I would recommend looking at getting your eyebrows microbladed. You can’t have it done whilst on chemo though because of the infection risk so bear that in mind.
It’s a rollercoaster and medical education none of us wanted to know about, so all sympathy on that score. Your medical team sound very good though so do take that as a positive x
Sorry that you are going through this. Your mind must be racing. I’ll echo what others have said:
Try and get more information
Do you know when the genetic testing will be done? It’s possible that, given the family history of breast cancer, a belt and braces approach to chemotherapy is being taken.
Try to find out why they are recommending packitaxel.
Would you be able to use a cold cap? It’s not guaranteed to work but many of the women on here have had good hair retention with cold cap use.
Give consider to counselling. It may be very useful to talk through all your concerns and thoughts with an impartial person.
Ovacome may have a support group for younger women going through ovarian cancer. Chatting to other women in a similar position regarding future fertility or early menopause may be useful to you.
I am with Dee. Before you lose it the hair seems hugely important. Then when it went I felt stronger and more fearless. This has lasted into my recovery. I went from Sunday ‘please don’t touch my hair’ to Tuesday ‘please clip it off’. The mind seems to adjust to cope.
Wigs allow lots of variation and minimal time to get ready when you are up to going out!
I used the cold cap and my hair has grown back thicker and darker.
You are in the midst of so much information and decision making. Best wishes in making the best decision for you.
Sorry to hear you are having to cope with this. I had an 18lb tumour removes over 20 years ago when was in my early 40s and haven’t had a recurrence. It was staged as 1a grade 3 so I had chemotherapy after radical surgery. I just had Carboplatin. I was reluctant to have chemotherapy but had it because I would find it difficult to deal with the situation if the cancer came back and I hadn’t had chemo. I didn’t loose my hair.
Is it worth getting a second opinion or else asking how much of a difference adding Taxol to Carboplatin will make in your particular situation? Of course there are no guarantees but it might help you making a decision.
Wishing you all the very best. I hope that at work they will give you understanding support and plenty of time to deal with your situation.
Give the Ovacome support line a ring during the week to talk things through
personally I would listen to the experts and go with their options, not very good if I have to make my own decisions!!
I’ve lost my hair twice, and although not a girly girl it wasn’t so bad, and at the end of the day it will grow back. How would you feel if you only went for one and it wasn’t so successful?
Look into the cold cap, I never had it but saw ladies with it. To me it looked really uncomfortable and they were still thinning, but find out about it.
Hi Kscott10, sorry you are faced with all of this at such a young age. However, there is plenty of hope for you, especially if you are otherwise in good health. So much of my story is similar to yours. Even the size of the cyst (mine was 15 cm at diagnosis, 17 cm a couple of weeks later just before surgery). I was diagnosed after collapsing in excruciating pain on a Sunday afternoon, and scheduled for urgent surgery. I was 48, which meant the preservation of fertility wasn't a priority, so I had full hysterectomy (TAH-BSO, or total abdominal hysterectomy and bilateral salpingo-oophorectomy). My cyst didn't quite burst but had begun to leak. The tumour was classified as stage Ic and grade 3 (mixed clear cell and endometrioid), and I also turned out to have stage Ia endometrial cancer. I was offered chemo and was very worried about having to make the decision myself, but thankfully my oncologist made all the decisions. After taking my full allergy history (which filled a side of A4!) she told me taxol wouldn't be a good idea. The 5-year survival stats were 70% with no chemo, 78% with carboplatin only, 79% with carbo-taxol. So I had carbo only and didn't lose my hair. I am still here 17 (yes, 17) years later! But if losing my hair had been the way to gain a few more extra years (or indeed many more extra years) I'd have gone for the taxol option. Chemo was somewhat belt-and-braces for me, but I'm very glad I did it. I would definitely go for the second opinion - sometimes another pair of eyes can spot something that the other doctor didn't and even if they fully agree with your previous doctor, it at least tells you that that is a good choice. Genetics wise I was later found to have Lynch syndrome, which increases the risk of endometrial, ovarian and most significantly bowel cancer. In your shoes, I'd take everything that's offered! Wishing you all the best.
I have just read Nara42's reply and I don't want you to worry if you do decide to have carboplatin. I found it highly manageable. The worst side effects were constipation and when I found out that was from the anti-sickness tablets and not from the chemo it was better for me to not have the anti-sickness tablets. Let's save those posts for another thread though.
For the time being we are all trying to help you decide on which chemo to have. You don't say which hospital you are being treated at (and I'm not asking) but a second opinion from somebody at The Christie hospital may provide you with more helpful information so you can make a better informed decision.
I'm sorry you're going thru this joining the club no one anticipated. I'm a different stage I would definitely get a second opinion as I got 3 even though you have a successful debulking which was my case rogue cells can escape the chemo as is my case mine is a higher stage but I am currently having carbo/taxol for a small recurrence after 22 months no symptoms my CA125 spiked which thank God is a good indicator for me. I wanted to share I am using the cold cap as I did during frontline I've lost about 15% of my hair it was important for me to "fly under the radar" I have a short haircut had it hi-lighted blonde before so when I get it trimmed I still have color it does make for a long treatment day I take a couple Tylenol before I arrive and purchased slip on ear muffs from Amazon which the gals put under the hair band invaluable its a bit uncomfortable for the first 15 minutes but no one except myself and my hairdresser can detect my journey. I'm in the states so I use the Dignicap.
Hair loss may initially upset you but in the scheme of things not so terrible. Iost my hair 3 times over the last 9 years. Now on a drug that thins but doesn't bald. Wigs are reimbursed should you go that route. What matters is that you make the best medical decision and worry about looks later. While chemo is frightening for someone as young as you the medical team puts in place anti nausea drugs as well as support groups ..wanting children could you freeze your eggs? Anyway welcome to the club and take heart there are thousands of us going through the same thing Hugs from paris
Please, please , please take the Carbo-taxol. Your hair will grow back. Get a nice wig or turbans and scarves. OVCA is insidious and sneaky. I was 1C in 2008. I had a TAH, because I was beyond childbearing years. Harvest some eggs. I remained cancer free after TAH and Carbo- Taxol for 6 years. Rediagnosed in 2014 and 2 subsequent recurrences, but I’m still beating it back. Message me if you want specifics. 🙏❤️
So sorry you are in a quandary about which Chemotherapy you should go for. Just collect as much information as you can before making your final decision. It may be a good idea to get a second opinion.
As for losing your hair. I finished my Chemo. last December I list all my hair but I found it quite liberating I have had so many comments about my hair now. I’ve kept it really short and I’m loving it.
Hope all goes well you will get to the other side. Life will be good again.
Hello Kscott,First of all, very sorry to hear what has happened. Keep in touch with everyone here, they're wonderful.
I'm older (59), otherwise almost identical diagnosis to you.
I had 3 x surgery to remove most of the reproductive parts including the omentum.
Like you, offered adjuvant chemo of carboplatin and took it.
Hair fine. Persevered with any side effects e.g. constipation, and came through.
It's rubbish, I know, not easy to keep your head clear. However, look to the future, eat healthily, exercise, and trust the oncologists. Oncology staff are amazing.
Thank you for your post. I can see that lots of members of the forum community have shared their thoughts and experiences which I hope you have found helpful.
MarieJ and Fluffyjumper mention Ovacome’s support group for those diagnosed under the age of 45. This is a friendly and supportive space to connect with others who have been diagnosed with ovarian cancer at a younger age, ask questions and share experiences. If you would like to learn more about the monthly online sessions, please visit: ovacome.org.uk/event/under-.... The group meet once a month online via Zoom and we warmly welcome new members. More information, with the option to sign up, can be found here on our website: ovacome.org.uk/event/under-... .
We also have some information for younger people diagnosed with ovarian cancer that I hope may be of interest: ovacome.org.uk/younger-people. This contains our Younger Women’s guide, written in partnership with several other charities, which can be found here: ovacome.org.uk/Handlers/Dow... . We can also send this guide out to you in the post, free of charge, if you prefer?
In addition, we have some information all about Stage 1 ovarian cancer which I hope may be helpful: ovacome.org.uk/stage-1-booklet .
We also have some guidance about the process of getting a second opinion here on our website: ovacome.org.uk/getting-a-se... .
We are here to support you so please don’t hesitate to get in touch if there’s anything you would like to talk through or any further information we may be able to provide. We can also help you to plan or prepare for any future appointments with your clinical team, if you think this could be useful. You can reply to us directly on the forum, email support@ovacome.org.uk or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm to help with questions or just have a friendly chat about anything that’s on your mind.
Thanks so much for all the replies it means a lot and apologies it’s taken a while to get back. I had a look through a lot of the replies and they’ve been really helpful. I have enquired about a second opinion at the Royal Marsedon, waiting for them to get back to me. I did sign up to the group for the younger aged people too so appreciate the comments on that
I am due to see my oncologist tomorrow to discuss next steps as I have been doing IVF, had the egg retrieval last week but sadly the two eggs weren’t mature enough so couldn’t be frozen, thankfully I’ve been offered another chance at IVF which will delay chemo for another two weeks I will go in to my appointment tomorrow with all the questions. I will also need to see if the oncologist thinks it’s safe to delay chemo as I was suppose to be starting it next week.
Some of the questions asked what type of cancer is it all I know from document letters and discussions is it’s stage 1C1 at least it burst during surgery and the tumor itself that was removed was a grade two moderately differentiated adencarcinoma.
My markers pre surgery have never been raised for cancer too they were deemed normal range so this was CA-125, CA-19 9, CEA, the biopsy from the cyst apparently indicated it may not have originated in the ovaries but after a colonoscopy endoscopy and CT scan was done they could not identify any cancer (as in it didn’t appear to be metastatic) so treating it as ovarian I wonder if this is why they are pushing for both types of chemo due to the fact they cannot determine the primary (again await second opinion or answers from the oncologist tomorrow to confirm) should also mention as hysterectomy not been done due to fertility sparing I guess they cannot do a full biopsy to check for an accurate staging, but the gynaecologist has advised it may not be necessary to do it as the uterus and cervix appears healthy from a scan he has done the right ovary too however I have a haemorrhage cyst that’s developed on this ovary but it looks normal according to gynaecologist and hasn’t grown in size he is going to keep a close eye on it.
I think there are also concerns about me going through menopause early. I forgot to mention whilst hair loss is something I’m coming to terms with I also suffer with an auto immune condition sle lupus and so the oncologist said chemo will be tricky for me and will need to closely monitor my kidneys etc I’ve already had my consultants for lupus ring me to tell me what drugs to stop taking when I start chemo think it’s just a risk overall for me.
I will keep you all posted as and when I hear more and which chemo I decide to go with. It is great to know the cold capping worked for some so thanks for that. Xx
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