My mum sent me this information with the hopes that I can find support and information as I’m starting out my journey.
I had been having irregular periods and lower back pain for a few months. I would take medication and just push on. In December, I had such severe pain I called my husband, who was at work, and asked him to check on me because I was feeling so ill. He rushed home and took me to the hospital.
After several scans and bloodwork, they found a mass on my right ovary. I was discharged with pain medication and scheduled for surgery a few weeks after.
i had the surgery, my right ovary and tube was removed and several biopsies were performed.
The mass came back as clear cell and serous ovarian cancer. The biopsies all came back negative however and I was diagnosed as stage 1a.
My oncologist recommended a full hysterectomy and 6 rounds of chemo, however given that I’m 34 and we had planned on starting a family, she got us into a program for embryo creation and freezing. She said it wouldn’t be a huge risk to take this time and do that for our future.
We just finished the procedure and I’m now scheduled for surgery at the end of March. We are still waiting on our final count of embryos, but I’m feeling very positive about this.
This has been so much to go through in such a short time, but I feel ok with the choice we are making.
Does anyone have tips on recovering from the surgery and for going through chemo? I’m very nervous about starting chemo and having an access port and the thought of losing my hair - after I’ve lost so much of my body. Has anyone had success with cold caps? We reached out for a second opinion and he suggested the same treatment we are going through but told us about cold caps. It just happens that my hospital does have them.
Are there particular foods that help with chemo and recovering? What types of things did you/do you use to help you get through work days after the treatment?
Thank you all so much for reading!
Gabi
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Trixie-boo
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Hi Gaby. So sorry to read yr post at such a young age, good news they caught it early. First tip, are sure your hubby has a bed pillow with him in the car when he collects you after the op to put across you tummy to cushion your tummy from the car seat. Be kind to yourself, let others help, do as yr told, no lifting, stretching. When you start chemo make sure you take anti sickness meds, no point suffering. Chemo is cumulative so after each cycle you will feel slightly worse. Be mindful that everyone is different. Eat healthily, you may find little and often is better. I wouldn’t imagine you will be working during this time, you will need to avoid young children and ill people at this time as your immune system will be low and you really don’t want to be catching anything. I wish you well x
Hi Gabi, and sorry to welcome you to the club nobody wants to join! You’re here though and will find this a support as there’s little that at least one person hasn’t been through.
You’ll probably not find the surgery that bad, it will also depend on whether you have keyhole or open. I had open so can only comment on that. Hospital: nighties not PJs, long charger cable, download some things you like to watch to a tablet, notebook and pen, smellies which make you feel nice, lip balm, water bottle (my hospital had a filter dispenser so the really cold water was wonderful), flip flops for the shower, eye mask, ear plugs, comfy clothes which don’t press on your wound. Some use a folded towel or small pillow over the wound to stop the seatbelt rubbing on the journey home. Same thing goes for chemo as well but if it hurts, stings, you feel sick etc- say something, you get nowt in this game trying to be a hero and the medical staff want you to be as comfortable as possible.
Chemo: the thought of losing your hair is worse then when it happens. I wasn’t offered cold cap due to the length of time hooked up as they didn’t have the newer machines where you can move around with it on (you can move about with the chemo in no bother). Again water bottle, stuff on your tablet, I had a small recharchable fan as the unit was very warm in the afternoon, comfy socks/slippers, snacks if on dual infusion (although usually get fed as well). Get a good digital thermometer as you’ll need to keep an eye on that. I’m also a bit odd but kept a symptom chart for each cycle so could tell them accurately at the next session how I’d been and which were the worst days etc. Food wise, just eat whatever you feel like! My ‘bad days’ saviour was fish finger butties. Don’t get hung up on having to have certain foods etc as they just want you to eat so you have some fuel in you. Drink loads to help flush it through in the days afterwards.
The biggest nugget though is to try keep things in boxes-don’t stress about something you can’t control, all it is is baggage and a load for you to carry ❤️
Also recommend looking if you have a local Maggies Centre and sign up for a LGFB session xx
I'm sorry to hear about your diagnosis. 1A is good news, if it can be seen as good news.
Prognosis is great but I'm sure you've been told that.I have Clear Cell ('provisional' or 'out of caution' staging 2B - long story) and I had my op in November last year and am doing chemo at the moment.
I found - if you can afford one - a Snooze Band really good for hospital, in terms of drowning out hospital noise and being comfy while listening to podcasts and stuff. You can also put them over your eyes to block out the light! They're great when recovering at home, too and I now use mine when I go for chemo. Download some content in case your hospital doesn't have great wifi, maybe?
Surgery was tough in terms of immediate recovery in the weeks following, but you're young and probably fit, which will massively help you I'm sure!
As Yorkiepudd says, recovery from the op depends if you have open surgery or the little incisions. I had both - so work was done ''open" then surgeon closed me up and did the rest through the 2 tiny incisions. The surgeon said to me the shorter time you are open the quicker your recovery. If you just have the little incisions, judging from the 2 women opposite me who were clamouring to go home the following day and loudly proclaiming how great they felt then I think you'll be surprised at your recovery!
In any case Do NOT do what I did and overdo it after the op. I went on a 20 minute shuffle a week after surgery and caused myself a huge setback in my recovery. Rest rest rest and do the exercises you are prescribed to keep your blood moving around your body, like you'd need to do after any major operation. My scar is healing so well 3 months on bits of it are fading away and you can barely see the little ones at all!
Chemo, well, I'd probably get through surgery first before you focus on that, personally, so you're breaking down the experience into manageable chunks. But briefly, if you do the Carbo/Taxol combo it can be quite a long day. Here in the UK mine took 6 hours the first time and over 7 hours the 2nd. The Taxol is the long one (mine is 3.5 hrs - not sure if this is standard) whereas the Carbo is short (mine is 35 mins) and you have all sorts of other stuff given to you to help you beforehand and in between. So that's where my Snooze Band comes in again! Some of the meds make you sleepy so I tend not to be able to read anything substantial but I do busy myself with puzzles which also helps the old grey matter. I opted not to do the cold cap because it adds yet more time to a long day but that's just me, I'm an impatient ADHD-er who does not do well with sitting about!! If you're just doing Carboplatin then the long day doesn't apply. I decided to have a short elfin cut beforehand as my hair was shoulder length, to acclimatize a bit, and get my niece, nephew and boyfriend's kids prepared somehow, if that makes sense. Then I got my boyfriend to do a grade 4 when it began coming out just before Chemo 2 (it's the Taxol I believe that cause the hair loss? Or makes it more likely??) then as more hair fell out, he did me a grade 1. To be honest I wish I hadn't done the last 2 stages as short blunt hairs falling out has been itchy scratchy! But on the upside I'm rocking self styled scarf turbans even though I say so myself. And of course, it will grow back!
That was not 'brief' sorry! You can tell I don't have enough to do..!
Thank you so much for all of this information! I believe I’m doing the combo chemo. I know there are two they will have me on but the names slip my mind.
Lots of great advise already so I just add about my experience regarding cool cab.
I have had 6 chemo, operation and two more chemo afterwards.
1st time after the 1st chemo, I lost most of my hair even though I used the cool cab. (I had over the shoulder hair length and only shaved after 2nd chemo) Then I didnt bother. With one after the operation my hair started growing already and everyone told me that I would lose my hair again but I used the cool cab both times and I just lost very little (I was so happy). It might be also my body got stronger against the chemo.
Contact Hair Reborn chairty and they will give you lots of good advice.
One thing they told that cool cab also helps your hair grow faster which I didnt know.
I found losing hair, eyebrow and eye lashes very upsetting. But they all grow back better than before. Good luck with every thing xx
Hello Trixie-boo - so sorry you have had to join this club. I am glad that your medical team are all on the ball! You've had really good advice from everyone which I total echo. My only other point would be - invest in a long handled grabber - I was dropping everything when I came out of hospital and I couldn't bend over to pick it up! Next- I found a bed wedge support invaluable. This mimics the ability to be propped up in bed (as in the hospital bed). I couldn't sleep flat on my back but I could with a bed wedge. Get some ear buds to connect to your phone etc as I was often awake in the early hours of the morning and could then listen to podcasts / music without disturbing anyone.
I went on to have chemo although my type of cancer (mucinous), responds poorly to it, it was felt it was worth doing as I was 1C (the tumour ruptured prior to surgery). I was given carboplatin only. My hair thinned out but I didn't lose it.
I know its been said already but it really is worth saying again - don't overdo it! I was in bed for two weeks post surgery - I had a lengthy vertical incision. I struggled to walk around but was encouraged to do what I felt was comfortable. No lifting anything heavy - believe it or not - even the kettle can feel heavy. No driving for 6 weeks.
Get prepped before surgery - if you feel up to it, with any food shopping and getting your bedroom organised. But only if you feel up to it.
Take care and know that we are always here for some support. x
Hi Gaby, I had a full hysterectomy last March followed by 6 rounds of chemo after being diagnosed with stage 3 ovarian cancer. I decided to try the cold cap, but only lasted about half an hour. My treatment was very long and I just found it too painful and uncomfortable. Having said that, I could see other people in the ward wearing cold caps who seemed to be fine with it. Some people swear it by it, but I wasn’t convinced that with the type of chemo I was having it would work. I was told that with each different chemo drug there is different levels of hair loss. It is very hard losing your hair and I did lose all mine quite quickly after the second round. I had mine cut quite short before it happened so it wouldn’t be as traumatic, which helped.
My last chemo was in September and my hair has grown back now. It’s looks pretty cool, but I do like short hair on me. It has grown back curly which is odd. I hear that it’s pretty common and won’t necessarily stay that way. I wore silk turbans that I found online (I think I’m wearing one in my photo on this forum). They really helped me through the no hair stage but I was mightily sick of wearing them by the end.
You are supposed to eat healthily during chemo but on the bad days following each round I mostly just ate ice cream. I craved cold things. Just being honest!
hi Tricia-boo, so sorry you’re starting this journey. Lots of good help already been given so I’ll just mention the old cap.
It needs to be booked before hand as it needs to be worn upto an hour before Chemo IV starts. Make sure you have the right size hood - very important it’s tight (maybe call in ward earlier to check size out). Important to start at your first chemo. You will need to take cheap hair conditioner and thin cotton hair band to push hair back and cover ears.
The first 10 minutes or so is like putting your head in a freezer but then becomes ok. After treatment need half an hour extra before you can leave. Take a hat as hair will be damp.
If you decide it’s not for you, ask on ward for an NHS voucher towards a wig, some nice wigs available which can be cut ie fringe or length. I found great in winter but hot becomes uncomfortable in summer. Lots of choice of head coverings on line.
I tried cold cap for 2 cycles but the cap was medium (too big) and by then my hair was coming out in clumps!! Carbo and toxal treatment, I don’t eat evening before treatment or breakfast to help bowels constipation! Drink plenty for the first week to flush chemo through.
Operation and chemo take one day at a time and be kind to yourself it’s all doable. Best wishes and good luck 🙏
Hello GabiGosh, I too am sorry to see you are dealing with this all at a young age, it must be frightening and alot to take in. However you are in the right place for support here, everyone will have been on some part of your journey at some stage. It may be useful to search the forum for younger members who are planning a family, just pop it in the search bar.
Regards hair loss, it has never bothered me. I heard the cold cap has mixed results and can be painful at first. I too had a pixie cut first off, then regretted shaving it after this as it can be itchy and uncomfortable when short hair comes through. Its common to get a sore feeling with hairloss do dont be alarmed. I just embraced it and will happily have a bare head in public if its not too cold! I findI get cold after chemo so cotton hats warming up on the radiator are very welcome. Ive just had my 3rd chemo round and it has been rough this time. You will be advised what side effects to expect. I was unlucky & have had everything going. The stomach issues arn't nice and your GP can prescribe laxative power for constipation which you will most definitely get. I added prunes to my diet, and drink warm water rather than cold to aid my tummy. Chemo strips the stomach so its not surprising. Days 5 & 6 are my worst days after chemo although everyone is different. I have learnt to accept it rather than fight it, as stressing makes it worse. Hot baths help achy bones, and plentyof rest. Let others take care of you, support is invaluable during treatment. Its hard to know what to eat as taste & smell change alot. I crave sweet things straight after chemo, but on my worst days I can only manage dry toast..get some healthy food in you normally like & see how you feel.
I too am having surgery, mine is 7th March so any tips from others on what to expect, take, do would also be helpful. Wishing you all the very best on this long journry, & if you can remain hopeful & positive as it definitely helps recovery 🤗❤️
Hi Trixie-boo I'm in the states so things maybe a bit different some hospitals provide an abdominal binder or you can get from Amazon really helped me. A port is the way to go I would suggest anesthesia its light, but I preferred to be knocked out. I've used the Dignicap cooling cap twice I believe the UK has Paxman both times with carbo/taxol chemo which is pretty much standard I lost about 30% of my hair so it worked for me I won't lie it's a commitment but for me it was important makes for a longer infusion day my hairdresser advised cutting my hair pretty short I also bought slip on ear muffs which really helped there's a washing protocol I kept it to twice a week. Fears about chemo are natural from my experience the fear outweighed the treatment itself. The surgery in my case wasn't bad at all I was up walking around the next day I was in the hospital 5 days because you have to urinate on you own I really only had them up my pain meds the night after surgery whatever they gave me was wonderful. Hope this helps 1A is good news
Hi, I used the ColdCap and really glad I did. My hair did thin a bit, but I didn't need to wear a wig or wear scarves. The first 15/20 minutes with the cold cap while your head cools down is not pleasant, but well worth it to keep your hair. Make sure it is on tight. Staff at the hospitals and day centres are brilliant and will take good care of you. Best wishes on your journey.
I was in your exact same place in 2008 I was diagnosed with a large ovarian tumor. I think you’re very wise to have harvested embryos, I know how important having a family is. I went through the hysterectomy, six rounds of carboplatin, and Paclitaxel, I was in remission for six years. I’ve had some blips along the road, but we keep fighting back the cancer. I think a cold cap is a good idea, what can it hurt? Otherwise, you will definitely lose your hair. I bought a wig, but never wore it. I chose turbans and scarves etc. that went with my outfits. Wishing you the best on your journey and please feel free to Message me anytime since I’m somewhat of an expert on this subject, though I never really wanted to be. ❤️🙏Leni
Also, they may be able to do your surgery laparoscopically. That’s what I wanted but mine was too large to bring out through my navel area. If you do have that choice, you will probably get some gas pains in your shoulders afterwards. Use a heating pad to get rid of them. If you have to have the big incision, the first few nights, you want to sleep in a recliner, and always have a pillow that you can keep pressed Against your abdomen. Thinking of you.
Sorry you were struck so young. Here's what I can share. Cold caps work altho hair will thin. Make sure they sign you up for consideration for trials. Take advantage of what they offer... massages psych counseling support groups. Take anti nausea med before chemo and 2 days after this permits you to eat normally. It's a slog and it's not fun but binge on mindless TV eat well walk exercise sleep. Good luck from paris. BTW I'm in my 10th year I think 10 operations altho I could miss one and chemo thru a port and orally and radiation. Cultivate black humor. Get your husband involved in your support.
Just wanted to tell you about my cold cap experience … it worked for me, hair has thinned but not that anyone else would notice. It adds 2 hours onto the day, so I was in for 7 hours but absolutely worth it in my opinion. First 15 minutes is uncomfortable but then your scalp goes numb so you can’t feel anything. I had a small inner cap and a medium outer, it needs to fit snugly. I’m so glad I did it, I’d have stayed until midnight if it was needed as it absolutely worked for me. Good luck with your treatment x
Take good care of yourself. ❤️ One thing at a time. Understand your surgical options, pros and cons and side effects. Other than a “full hysterectomy,” what else do they intend to take out and/or biopsy during the staging of the operation. Also, in the UK, are there two readings on biopsies esp when they find cancer? This helps a lot bc second readings can show something different. Do you have the full report? When they initially say stage 1, sometimes, not always, with OC things can quickly move to stage 2,3. It’s just the nature of the beast, but don’t feel special bc this is common in OC from a lot of interviews I have listened to with gyn oncos in the USA. You won’t be alone. So knowing your disease and knowing that you are in an excellent center that is on top of their game is a must. Get through the surgery first. After that they may have more results based on more testing they do on what they take out. Your treatment may stay the same or it may change. That’s why taking one thing at a time can be very useful. Some say that surgery will be one of the most important steps in your recovery and prognosis, they’ll have a close look, remove visible cancers and test nearby organs, maybe remove lymph nodes, etc. I got a lot of info on this after the fact, but it still helped me form more questions ahead of chemo options which did change after the surgery.
Eating well can be crucial, and moving! We can’t just leave it to chemo to treat this disease. It is helping cure us, it’s crucial but it also very toxic. Meditation, mindfulness, yoga - these are tools at our fingertips. There are yoga sessions on youtube by well known cancer centers. There is a special cancer mindfulness class incorporated in the Headspace app. I love it! Get it! It is just 10 mins at a time. The founder of the app, Andy had cancer as well, so in addition to his vast, deep, authentic experience in mindfulness, he knows what he is talking about. Join support groups like this one, you will find good info. It is a long battle and any long battle needs endurance, strength, faith, and the tools to help you get through each day and each step. Be easy on yourself. 🙏❤️🙏Anyone who is not helpful to you, needs to be cut out of the picture. They can exhaust you and distract you, drain you. Sometimes this means not telling everyone even closest relatives, or all your friends in the beginning, because you have work to do! You have to heal and that is a lot of work most people won’t understand. Some people need to be consoled, or can hijack your crisis, be dismissive of what you are facing, be unable to adequately support you- and all that takes time and energy you don’t have when every day there is something new to learn, a new challenge, right. Protect yourself. And if you like to dance, please dance!! 💃Put on your headphones, even first thing in the morning, and cut loose. In the kitchen, when brushing your teeth, in the shower, driving… Make a playlist. I dance during my chemo, in the bathroom with my IV. My body needs it, six+ hours of sitting there rots your body. Doesn’t matter how slow or fast you move. You are young!! And beautiful. Fight like hell. I love this poem Invictus, I keep in my stay strong folder (where people have sent me touching notes or emails or cards. On cloudy days, you forget their words about how strong you are, your good qualities… keep these near you. Read about the author of Invictus and under the circumstances in which he wrote it. And how Nelson Mandela recited this poem during his 20+ years of imprisonment. There is a movie by the same title, very inspirational…❤️💃❤️
resources: ovarcome.org in the usa has a podcast called connect ovar coffee, see top gyn oncos talk about everything in OC. ovarcome.org/connect-ovar-c...
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Good news post! 👏 
Low grade stage 3c omental cake
Too long between surgery and chemo?
Good news today after a sad weekend
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