Help! Scared & Confused

Hi I'm 25 years old and was just recently diagnosed with Primary Peritoneal Cancer. I'm still in shock and haven't really taken much in. I found this site after doing some research and thought I'd give it a try. I'm not too familiar with any of the lingo and terms used. I know this might actually be to vague of a question for me to ask but what the hay, I thought it wouldn't hurt.

I have stage 3 low grade primary peritoneal cancer. The doctors were surprised they caught it early and I'm surprised I even have cancer. Growing up I've always had stomach issues which I've thought was normal due to menstrual cramping and digestion but long and behold, I was told I have cancer after landing in the ER with such sharp stabbing pain in my lower abdomen. Of course I wasn't told this until multiple doctor's visits later and surgery. I was worried it was ovarian cancer because, well...who really wants to lose their ovaries and uterus? After concluding that it was PPC I didn't know if I should be relieved or more scared? So here are a couple of my questions to people who have been through this. I don't want generic answers from doctor's.

What happens during chemo?

What happens after chemo?

What foods can/should I eat?

How will I hold down food after chemo?

When will I start feeling better?

Those are some of the few questions I have. Please share your personal experience because I just don't know how to prepare myself and my family and friends. Thank you so much and looking forward to hearing from you all :)

39 Replies

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  • Hi Terresa, so very sorry you've had cause to find the site but you will find a lot of support and experiential knowledge here. If you look at the top right side of the page, there is a pinned post which is a guide for younger women- it was created by the main ovarian cancer charities and hopefully might be useful at this difficult time when it feels like you've been caught up in a tornado!

    Most women have both Taxol and Carboplatin, but some just Carboplatin and so can have different side effects and treatment. You will have meetings with the oncology team and as hospitals also have slightly different ways of managing the chemo they should be able to explain better.

    I was terrified by the idea of chemo, like most things the unknown can be overwhelming and once you've started you will, I'm sure, like so many others, find your own way through it.

    Most people although they may feel nauseous, have this managed by the anti-sickness drugs that are given as routine and if these aren't effective, you should have a hotline number to ring through to so that other options can be explored.

    I won't lie, it can be tough though people seem to have a range of side effects (these often have little to do with how old or fit you are) but there is lots of good advice on here as to how to minimise the impact of the side effects. If you do a search for 'tips during chemo' there have been some great threads where people have shared what worked for them.

    I was told to avoid things like seafood, unpasteurised cheese, soft eggs etc and this is because chemo can affect your immune system so it's good to lower risks. It's also important to take seriously the advice about reducing infection from others and being careful with cuts etc. You will though be given info about this.

    One of the common challenges is dealing with constipation so eating plenty of fruit and veg (especially pears!) and staying well-hydrated is important. Penny Brohn have some good advice on diet during chemo on their website.

    The best thing though is to be gentle with yourself so eating what you fancy is good advice. Sometimes tastebuds can be affected so you may have to experiment a bit with what works for you.

    As (for most people ) chemo is done every three weeks you'll find that there is a pattern to how you feel and it's a really good idea to keep a simple diary first time round so you'll get a feel for this. It's fairly common to have a couple of days feeling a bit 'wired' due to the steroids that are given, and then a grotty few days (it can be longer for some) an OK week and then a much better week. I found what worked for me was to not fight the grottier times but make plans to do things once I felt better.

    It is always good though to try to get up and about a little even if it's just a walk to the end of the road or the bottom of the garden! Although it may not be what you feel like, exercise can really help!

    I know you'll get lots of other's advice and experience and hope you'll find the support here useful, wishing you strength and hope, Sx

  • Thank you so much for all your help! You and everyone in this community is slowly easing my anxiety into my first chemo treatment. I'm so happy to have found this site to give me the advice that I needed.

    Hugs & Kisses,

    Teresa

  • So glad it's helped a little- it can be quite isolating and I hope you'll remember that there are always people here! There may be practical suggestions that members can share once you're nearer the start and have had a chance to find out from your team the specifics of your treatment plan. Take good care of you, Sx

  • Hello there .. It is a shock, I'm sure. It's hard answering your questions because I'm not sure of your treatment plan. You'll have it explained by your doctor.

    I'm also low grade and turned up at A and E many times before my final diagnosis of PPC. When I look back, the symptoms were obvious.

    I was told to eat low fibre meals but I did need extra bowel supplements so I feel you need expert advice rather than what I have to say.

    Sending hugs. Xxx

  • I recently got surgery to debulk the tumor as much as possible and preparing to start my first chemo treatment after Thanksgiving. Thank you for the advice! What are your treatment plans?

  • Hi Teresa,

    I am sorry you are dealing with this and I am sure everything is shocking and scary. Sunfluery has covered the vast majority of things you have asked and I don't have much more to add without repeating. I want you to know that the ladies here are kind and patient and you will find a world of support and encouragement here as you start your journey. I have always found Chemo fine, a few days when I am tired but I was never sick. I ate what I wanted and had some mad cravings but in general my appetite was good. I started to feel better immediately after the Chemo was over and certainly much better after I had my operation to remove the cancer itself (which was before the Chemo). You should receive a booklet about the chemo treatment you will receive that explains most things, it may be generic but it is useful, for everything else this site is invaluable. Believe me, someone here has normally had experience about anything you might want to ask. No question is silly or trivial or not worth asking, just keep this in mind. We are always here for you. As for your family and friends you will find that they will most probably be anxious and upset for you but will want to help and support you. Lead the way with them if you are strong enough and are able to. Tell them what you need from them if you can and they will respond with the incredible love that they have for you.

    Wishing you all all the best,

    Trish

  • Thank you so much Trish! I find everyone on this site to be so great and helpful! I'm hoping to have be able to have an appetite after chemo. Doctor's are really pressing me on the side effects especially loss of appetite so wish me luck!

  • I can't add anything more to the excellent information and advice above but would just like to send good wishes to you X X x

  • Thank you!

  • Hi Teresa

    The ladies above have given good advice but if you have carboplatin you will lose your hair. I have used the cold cap and after 4 sessions have still got approx 70% of my hair and there are tremendous products on the market to disguise any bald spots. This may seem trivial but was very important to me.

    Lots of positive thoughts for your treatment and recovery.

    Bev xx

  • Hi Bev- it's the Taxol that causes hair loss, I know some people who have experienced thinning with Carboplatin but it doesn't for most affect the hair follicles. May have been a typo/ gremlin! I'm glad that the cold cap has worked so well for you, very best wishes, Sxx

  • Thank you Bev. I don't think losing your hair is trivial. Hair is important to a person's self image & self esteem. That was one of the first things that ran through my head when I was told I have cancer. Thank you for this invaluable information.

    Hugs & Kisses,

    Teresa

  • So devastated to hear tjuichat this is happening to you at your prime of life. My mother has gone through treatment twice. What made a substantial difference in her energy level during chemo was her eating habits. The first time she had chemo, I made a combination on beet, apple and carrot juice for her weekly. She drank it one day prior to chemo and 2 to 3 days after. She also drank a blended kale mixed with other greens. I cut back sugars in her diet. Read about the affect of sugar with cancer. I had to continuously remind her how many things actually acted as sugar when digested. During that chemo session she was strong. Her bloods counts were great and she never missed a chemo session.

    The second time around she refused any of the juices and just decided to eat as normal, (her normal) whcih was not a good strong healthy diet. Needless to say, she was weak and had low blood counts quite a few times during her sessions. I think one of the very important components of feeling strong during chemo is healthy eating habits and movement.

    My mom was not a very active personprior to diagnosis and naturally became even less active during treatment. After her several treatements she got a blood clot in her lungs due to lack of movement. Much luck and I will keep you in my prayers. Keep your spirit high.

  • Hi Venessa .. It could be that your mum was more poorly on recurrence. I feel that a normal balanced diet means that there's no need for supplements but I think it would help a lot where diet is poor in the first place.

    What is lovely though is the help and support you provided and I think that's wonderful. A big dose of pure love goes a long way. I do know that. Xxx

  • Hello Tina B. So glad to hear from you. I am here for support. My mother's illness has woken me up to the ups and downs, the hard blows and the desire to live and love a quality life with cancer patients. Never in a million years would I have thought that there is so much uncertainty, still, in this field. There is no clear answer but on everything I've read, there are supplements, univestigated throughly that helps. I am aware that the body is more beaten down the second time around as well as there are some years added but last week after the great scare with the blood clot and all, she started back juicing and I do declare that she had a much better week. Her down was not so down. I believe that proper nutrition plays such and important factor in (not necessarily the healing) but for sure, the quality of life. For me, with my mom as with any cancer patient, I think quality is equally important to quantity and if nutrition plays such an important factor in energy with the healthy, what miracles could it perform with the sick? In mothers case, for sure it might have also contributed to some weight loss. She was not one of the patients that lost weight during treatment, instead she gained and the stats are not good with obesity and weight loss. Had Terresa been my child, I would have filled her little body up with so much nutrients, not necessarily supplements but nutrients that this cancer would have had to find its way around the healthy diet and the fighting spirit to get her. My own daughter had to have major heart surgery at age 20 and believe after the surgery was done, we regulated her diet and exercise plan boosters up her ego and sent her off to live and love. I know that's not the same but I also believe that if the doctors knew it all, so many people would not be still dying from this nasty disease.

  • I ate normally through both lots of chemo, & felt better during the 2nd than the 1st.I think another factor that affects how one feels during chemo is what type of chemo you are having. We may cope better with one drug than another, & I coped better with the 2nd drug.

    Di

  • Thank you for sharing Vanessa! I have started juicing since and hopefully it will help during chemo. I would like to think since I'm young and somewhat healthy chemo wouldn't affect me so badly. I probably won't be able to run anymore marathons but I'm hoping to at least walk a couple miles 3-4 times a week. My heart and prayers are with you and your mother.

    Hugs & Kisses,

    Teresa

  • Hi Teresa. My hope is that when you're done with treatment your health comes back to the point where you will one day be able to run marathons again. How has your juicing been going? Do you think it is making an impact with your level of energy? Hoping all is well with you. You can do it. Just another hurdle, like your marathons.

  • Sunfleury's summary is spot on and I don't have much to add to what she and others have said. Mainly to do enjoyable moderate physical activity when you can. I walk every day that I can manage during chemo and started a little, round the ward at first, after the op. The other is to get support around you. Do you have family, friends, a partner who will go to appointments with you, provide food in the first few days after chemo, call round to distract you?

    I can't comprehend what it must be like to have this diagnosis so early in life. I'm glad you found this forum, do ask questions whenever you need to. I still do after 5 years. I agree that generic answers, though they give a background, can't provide all the answers we need. Though one thing that has helped me is that the oncology team is so friendly and supportive so do ask them for more details and explanations when you need them.

    Lesley

  • Thank you Lesley!

  • Hi Terrestrial. So sorry you are in this position but glad you found this site as you will get lots of support and advice on here. My daughters are around your age so your post really went to my heart and I'm sending you lots of virtual hugs. Sunfleury is spot on with everything she said though and hopefully her reply will have quelled some of your anxiety.

    Hopefully you will not struggle too much on chemo BUT if you do there are lots of things to help with nausea, constipation etc. You will be given anti sickness medication and if those particular drugs don't work you can try others. I, like many on here, had hardly any nausea because of this.

    I also managed to do lots of enjoyable things throughout chemo like theatre trips, shopping, long seaside walks, weekends away etc. but I tended to plan anything special for the 3rd week of the cycle as I knew I would be at my best then.

    It is a scary time for you but once you start your treatment somehow it seems easier.

    Keep us updated on how you are doing.

    Lots of love.

    Mummy Bear. Xxx

  • Thank you so much! I'm hoping to have energy during/after chemo. I was hoping to do some running if I'm able to but I will settle for walks. I will be getting my first round of chemo not to long after Thanksgiving so I was hoping to have one last big meal and some time with family before it all starts.

    Hugs & Kisses,

    Teresa

  • It sounds like you're in the US Teresa? We do have American members on here (and you are totally welcome anyway!!) but if you haven't already found it there is another great forum on the US 'inspire' site. Search 'inspire' and/or 'the ovarian cancer national alliance' (OCNA). I don't usually post on there but I sometimes have a look. Xxx

  • Hi Mummy Bear. Me too my daughter is around this age so it really hit close to my heart. I have began talking to them more and more about awareness. I don't want to make them paranoid but reality really hit home and I know regular testing is not the first thing on the minds of young adults.

  • Oh nooooo Terresa, I've just realised I called you Terrestrial!!!! Whoops sorry! Silly predictive text. 😂 forgive me!! Xxx

  • hahaha no worries! autocorrect these days...

  • Dear Terresa,

    I'm just joining the others to send you warm wishes. You have been very unlucky to have this diagnosis so young. This is a great forum to get to know like-minded women and women in your shoes who really understand what it's like to go through a diagnosis of cancer at an early age.

    As Sarah (Sunfleury) says there's no knowing what side-effects you may experience with chemotherapy. It is a good idea to take in plenty of water. My hospital even puts posters up about good hydration.

    Generally I'd say do and eat what you feel is best for you. We all seem to develop our own ways of coping.

    Keep posting. It'll all make sense in no time. xx love Annie

  • Thank you Annie. The ladies here are great with all their kind wishes and advice. My first round of chemo will be after Thanksgiving and I'm not exactly sure what to expect after that. But hopefully being with my family and lots of food will help before the treatment.

    Hugs & Kisses,

    Teresa

  • Hi Terresa. I am sorry that you have to deal with the shock of this diagnosis and all of us can empathise with you on this. The one really hopeful and positive thing about your story is that the doctors have told you they have caught it early. Very few women are lucky enough to have an early diagnosis . Most of us with PPC or OC are found at a later stage. In my case despite complaining to a GP for many years about IBS like symptoms I was only found when my tummy swelled up with 8 litres of fluid and a locum GP did a blood test. I do think now that this disease was lurking for many years.

    The other good news is that I am now going into my 5th year and they only want to see me every 6 months now for another year. I found chemo very manageable for me. I was just so happy to be treated that I would have stood on my head to get it. I had Carboplatin and Taxol every 3 weeks which is the standard along with steroids which gave me great energy. As hair loss is usual with this combination I decided from the beginning that I would have my hair shaved after second treatment. I got a really nice wig and lots of nice head gear for times I didnt want to wear it. Cold cap may suit some women but it wasn't for me. I am no Sinead O'Connor so the no hair look was not for me but some women look beautiful .

    SunFleury and the other women have given you some really good advice on what to expect and how to deal with it. You may not get all of the side effects. For instance I never got nausea. I was able to eat normally and put on too much weight as a result ! I didn't do juicing or change my diet drastically partly because I was too busy plus my medical team told me to stick with my normal diet.

    You didn't say what your surgery consisted of but I never had surgery. I hope you have recovered from it and ready to go on to the next stage.. I just want you to feel good about the next stage and positive about the future . I wish I had been found at an early stage so if you read any other posts from me they will be written from where I started out from and that was way further down the road than you are. Stay strong and stay smiling . Take care.

    XXX

  • Hi Molly, thank you so much for sharing your journey with me. You are truly an inspiration to me right now as well as the other ladies on here. With or without hair, I'm you're beautiful inside & out. I am praying for you.

    I had surgery to debulk and starting chemo after Thanksgiving weekend. I am hoping time with family and lots of food will help me be more hopeful going into my first treatment. I'm not exactly sure what to expect during/after chemo but with positive thoughts and support from everyone I know I will be fine.

    Take care of yourself.

    Hugs & Kisses,

    Teresa

  • So sorry that you have to join our community but you will find plenty of advice and support here. One of the most difficult things for us all is that we are all different in the way we deal with the diagnosis and the treatment and how the treatment effects us. So happy to share experience but it may be different for you.

    I too have Stage 3 PPC. I had two lots of surgery to remove two tumours in November 2013 and February 2014 before embarking on chemo. Once chemo started I settled into a pattern of chemo, 2 days on a high as I had been on steroids in preparation for it, 5 days of feeling yuck with aching legs, 1 week of feeling better and 1 week of feeling fine when I could play golf and walk etc. My problem was that the chemo really effected my bone marrow so I was delayed 4 times out of 5 as some aspect of my blood counts were low and I had two blood transfusions. The last session was cancelled as the oncologist thought the risk was greater than from the cancer. Oh and because I tried Taxol I lost my hair. I say tried as I re-acted to it on the second and third sessions.

    After chemo I had a base line check of bloods and a CT scan and since then have had 3/4 monthly check ups with another tomorrow. I had no dietary advice but have cut out red meat and now eat a lot of vegetables. Just lately I eat vegetarian every other day. The anti sickness tablets worked a treat and I just ate what I wanted to when I wanted to.

    It seems most of us find the period after chemo a bit strange. I felt as though I was on my own, still dealing with what might happen next. The question a lot of us ask is "how will I know if and when it comes back. My oncologist says that I will know!! Still don't know how I will know. Check ups rely on me telling them how I feel and I feel a great sense of responsibility to be honest and correct. Most of us seem to be on "no bloods or scans unless there is a concern".

    So two years since the first surgery and 20 months cancer free I hope. We are off to New Zealand on Boxing Day for a four week holiday, the first since this all started.

    I hope you find this helpful - I am very lucky in the I have a great GP who is very supportive and a great oncology team. I didn't get on with my specialist nurse as I found her far too negative. I shall be thinking of you as you go through the next few months when there may be a few hard decisions to make and certainly some unpleasant bits but there is life on the other side. Love Val.

  • Val, you are so brave and strong. Thank you so much for sharing this with me. You are an inspiration to me, I can only hope I can be as positive as you have been throughout this whole process. I will be spending Thanksgiving surrounded with loving family and plenty of food before I start my first round of chemo. I only pray that I can keep my spirit up.

    Hugs & Kisses,

    Teresa

  • Hello Teresa,

    I could repeat much of what has been said as it is all really good advice from experience, but I don't think that anyone has mentioned a website "Look good feel better"? I lost all my hair too, found I couldn't cope with a wig (too itchy, even with a lining cap) but was lucky that many friends and family felt I had "a great skull shape"...but what I found most difficult was losing my eyebrows and eyelashes ! Even though I don't wear much make-up when well, I felt my face looked bland and bare. I found the link in Aug 2011 and at that time they did a booklet and DVD on how to do makeup for your eyes and on different ways with scarves and tips on websites for 'ready fashioned headgear'. The ways the video and booklet taught me to make my eyes look more alive really lifted my spirits.

    Warmest wishes and good luck, Teresa. Be kind to yourself every day...and that kindness does include the exercise you hope to keep up with, drinking the water and eating foods your tummy can cope with and enjoy .... all really important to nourish 'you'.

    Lesley

  • Hi Teresa

    Im sorry you have to deal with this at such a young age. I thought I was young at 39. I was stage 4 PPC. It's great you've had debulking surgery already. I was at a conference last week and they were taking about how advancements in surgical options will make a big difference in the survival rates. I had chemo/surgery then more chemo. Please be kind to yourself after as it is tougher when you start chemo after surgery.

    Everyone has covered what to expect so won't go over all that again but sending best wishes for you as you start your chemo xo

    Ps get yourself some funky headscarves you will rock them.

  • Hi Teresa

    Just wanted to add my warm wishes and wish you well with your chemo. Great advice from the all the ladies already, it is good you've joined at this stage I didn't find the forum until after my chemo had finished and the support and experience on here really is invaluable. I found it was best to avoid spicy foods and was very careful to make sure any meat or fish was fully cooked. The nutribullet or similar blender is great for upping your intake of fruit and veg.

    If you have family or friends happy to make nutritious meals for you to keep in the freezer for those days when you can't face cooking let them help you!

    It's really important to be as kind to yourself as possible, rest when you need and do happy positive things when you can and surround yourself with people who make you feel loved and uplifted.

    Keep posting and let us know how you are getting on.

    Best wishes

    Madeline xx

  • Keeping up as much exercise as you comfortably can has been shown to help with the effects of chemo so the run/walk is a very good idea. And of course you can combine the two, run a bit walk a bit. I find it so helpful to my mood to get out of doors and look at plants and hills and even a few flowers left.

  • Hi, welcome to our forum. I am sorry one so young has to go through this. I don't have PPC, but mine had spread to the peritoneum (lin in ng of the abdomen). There are a number of ladies on here who do have PPC though and I'm sure they will be in touch.

    I'll try and answer your questions.

    During chemo, you will sit in a big armchair and you will be attached up to a drip. Initially they do a flush (saline solution) to ensure that the line is working, then they will administer some precautionary drugs, eg, periton,. You will also be given steroids and anti sickness drugs. Then another flush followed by chemo. If you need the loo whilst on chemo, the drip needs stopped and you take it with you, a bit awkward if you have zips to manage so I used to wear tracksuit trousers. The chemo goes in over a number of hours. I had two different sorts so had another flush between these and then another one at end. Then you get to go home.

    In the UK we are given steroids to take at home for the next couple of days together with anti sickness meds. Make sure you take them and at the times advised by the staff.

    I had a metallic taste in my mouth which fresh pineapple helped to eliminate for a short while anyway. Also please ensure you drink loads of water and don't become constipated.

    I wasn't told to avoid any food, just my taste buds were affected and nothing really tasted quite right.

    The first night after chemo, I remember having a hot feeling in my tummy, I've heard of others having this too. I think it as the chemo starting to do its work.

    I was on a 3 week cycle, I felt great the day after chemo and most of the following day too but then my side effects kicked in and for the next 5/6 days, I felt awful, then I started to feel good again and was fine by the day of the next chemo.

    We are all different so its impossible to say when you will start t o feel better but hopefully you'll notice a difference soon.

    Good luck with your chemo and do keep in touch as we will support you.

    Ann xo

  • Hello! I'm so sorry you're going through this, but I'm glad you've found this forum and I hope it helps you and makes you feel less alone. I see you've already gotten a ton of great advice and I don't have much to add, other than to say -- the first one is the worst because you have literally no idea what to expect. The anxiety is the worst part of it. And you feel like no one will tell you what will happen, because everyone has a different experience! My first chemo was only a month ago, and I had my second one last week. It seems already there's a pattern to it, and I'm sure you'll find the same. For example, I felt fine the first day or two, then was absolutely exhausted for a few days when the steroids wore off. That's pretty common, I think. And the constipation (sorry!). To me, that was the worst and I didn't expect it. Please drink way more water than you ever thought possible and eat loads of fiber and fruit. Other than that, be kind and patient with yourself, get all the support you can, and just listen to your body. If you need to rest, rest. And eating small frequent meals or snacks can help keep the nausea under control & the tablets they give you are very good too. Wishing you all the best - let us know how you get on!

    Kerry xx

  • Hi

    Plenty good advice re the chemotherapy. I have high grade serous stage 3 PPC, diagnosed as a result of ultrasound guided biopsy. On a chemo / surgery / chemo treatment plan. Just started the first of my last 3 chemo sessions post operation. I kept a diary of how I felt during my first 2 chemo sessions and it helped me to develop a plan that suits me. Kept records of how I felt each day, side effects, tiredness, what I felt like eating, who visited and what was good about each day. I now take the chemo in my stride and manage to get some exercise every day. Getting a new kind of normal is what I am working towards. Fresh air, plenty water, eating as well as you can, resting if you need and keeping in touch with friends. I am on carboplatin and paclitaxel mix of drugs. My hair has grown in again with the break from chemo whilst having my operation, and will disappear again with this next round of chemo. Headscarves and hats work for me. But I also have a funky blonde wig with dark roots that I will get some use of during the next few chilly months.

    I wish you well, you are so young and have other concerns to deal with . I am 56 years young. Good information and support goes a long way to help us all cope, and the women on this forum have both in abundance. I have many of my questions answered before I even know have a question.

    Love and best wishes.

    Loraine x

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