I've never been a fan of forums but, I'm lost. After knowing my news for the last 10 days I've only now been brave enough to research my diagnosis.
I'm about to start chemo in 3 days and I'm not confident of the treatment I'm receiving and if surgery is an option.
I lost my Mam 6 months ago to Ovarian cancer, she was diagnosed only 3 months prior.
I've now been diagnosed with stage 4B PPC. To look at me you would have no idea, I have had no symptoms apart from a lump in my neck. This was checked out at the doctors at the same time as having the CA125 test due to my mam's cancer. BTW, the test came out at 35, it has now risen to 48.
Turns out the lump is an enlarged lymph node. After a PET scan and neck biopsy it's been confirmed as PPC, however, scans don't show any tumours at all in the abdomen. I have however been told the nodes in my neck, abdomen and chest are all enlarged.
Due to the spread to my lymph nodes i have been told it is not good. I will have 6 cycles (4 months) of taxol/carboplatin alongside Avastin, where the Avastin will continue for another 8 months. There has been no talk of surgery.
I have looked at other posts mentioning Christine's in Manchester and Basingstoke re surgery. For you ladies who had surgery, had your cancer spread to your lymph nodes?
Unfortunately I don't have confidence in my consultant and feel like my diagnosis hasn't been fully explained (the last 2 hours I've spent looking at posts have given me more information than my consultant!), I have sought a second opinion from the Royal Marsden but as these things often can be, this is proving a logistical nightmare and I'm chasing my tail.
I don't want to start chemo and find out later on down the line that if I'd have known better, an alternative treatment was out there which would have given me a better chance.
So ladies, anything that you can help with would be gratefully received. Any options I may not have thought of, any specific consultants or hospitals or treatments, including alternative treatments.
I'm willing to travel anywhere to get the treatment which would give me the best chance.
Thank you in advance x
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Redlawsy
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Welcome. I too wouldn't have touched a forum type thing with a barge pole before but I can honestly say it's been a godsend and totally changed my opinion.
I'm so sorry you're here especially after losing your mum
Personally I wouldn't delay the chemo as it can always be stopped if another treatment is suggested. Many ladies have half the chemo then surgery then more chemo. The chemo will shrink the lymph nodes and believe me u don't want them chopping lymph nodes out all over the place.
My OC was also in my lymph nodes and I had absolutely no symptoms. Had ones in abdomen removed at same time as ovaries etc removal. Surgery was very tough to get over so you'll be stronger to deal with the chemo without it.
Keep chasing your second opinion whilst u go ahead with chemo
Thank you Em for your reply. Did you have surgery before chemo? I wasn't sure if I was deemed too advanced for it to be considered which is why it's never been discussed. Also, where did you have your surgery?
Hi. Yes I had surgery first then chemo. Had TAH and omentum removal as well as lymph nodes. Carbo/taxol 6 sessions. Had my surgery in Margate.
I'm assuming they are not suggesting surgery as they need to shrink what's there first to see if anything remains.
If they remove too many lymph nodes you will end up with lymphodema all over. I have it in my leg. Small price to pay for still being here but depressing none the less!
I only finished chemo in July so early days for me too
Hi. You are experiencing what we all have when first diagnosed. It is a very stressful time but you will feel better once the treatment starts. The Carbo/Taxol combination with added Avastin is supposed to be the gold standard for first line treatment. It's what I had, so I don't think you should worry that you weren't offered anything else.
Have you asked about surgery? Perhaps after the chemo, they will be able to operate.
You will get a lot of support from this site and as you have already seen, there is loads of expertise available here.
I have done this treatment also, on avastin now and will be until February, I can honestly say chemo for me was easier than avastin. Also they will give you anti nausea and painkillers to help with side effects. My motto is to tackle everything head first and not be scared, the drugs and immunotherapy they are coming up with everyday are amazing, so it's not all doom and gloom for us😃😃
Hi Rediawsy, I am 3c & was told no surgery because it had spread too far. I had 6 chemo then was offered chemo. Everyone is different also our care providers have their own ideas on how to treat us.
If you are not happy see if you can get a second option. There are a few hospitals that are leaders in the treatment of oc.
This is a great site you can pick our brain's has much as you want there is alway someone that can give you some advice. Thinking of you take care Cindyxx
Hi Redlawsy, yes I know how you feel. It's hard enough trying to take this all on board, wondering if they are offering you the right plan then asking if you can have a second option.
You have had a good response from the lovely ladies on here. I hope this helps you.
I just take a photo on my phone of the excellent advice on here then when I am waiting to see my onc or having chemo I read it. I will be taking photos of most of your answers because I can learn something new as well. Take care Cindyxx
Hi, so sorry you've had cause to join the forum... I was similarly reticent about them but have in the last 5 years since diagnosis found so so much good sense, insight, experiential knowledge and support here...
A lot of people seek second opinions and quite a few wished they had been aware of how acceptable this is within medicine. In general terms The RM and The Christie are amongst the largest cancer centres in the UK but there are also other centres of excellence and individuals who are pioneering cutting edge surgery etc in the UK. A recent BBC program 'Hospital' for example highlighted the work of Prof Cristina Fotopolou doing radical gyny surgery. The larger centres' strength is having access to more clinical trials and possibly surgical options etc and so this shouldn't undermine confidence in teams elsewhere where standard treatments are optimal.
Three of the main charities, Ovacome, Ask Eve and Target Ovarian Cancer have specialist nurse-led helplines and it may well be worth calling them for their advice which I know many have found invaluable. There is also an online clinical panel (UK experts in the field) which you can ask a question of.. i takes a couple of days to hear back but you will get a range of responses there.. targetovariancancer.org.uk/...
There are a couple of booklets too which may be helpful- one for younger women which can be downloaded or ordered free from the main charities and additionally one specifically for all women newly-diagnosed, 'What next?' from TOC.
The rules of this particular forum mean that we cant recommend by name individual consultants though you may well hear from members by direct message their personal experience . There is also a very active (closed) Facebook group called Ovarian Cancer UK where you'll also find many of us and where similar conversations about recommendations for second opinions are not restricted so open for discussion.
Having faith in your Onc is really, really important and my feeling is that the loss of this is often caused more by communication issues than clinical practise. Its a scary time and finding a good second opinion may reassure you that your treatment plan is actually the best one... It is worth considering though if you were offered alternatives and wanted to be treated there would you be practically able??
Wow, thank you for all the info re charities and Facebook page, I'll check those out. I live on the south coast however am from the north east where my family are, so I have already struggled with treatment location. HeyHo, what's another one to add to the mix! x
Hi I also got diagnosed in march with stage 4 ppc. I too was very scared and panicked about out come. When the doctor told me what I had she said it as though I was about to die within weeks. But when I saw the oncologist she explained it better and as soon as I was on a treatment plan I felt better.
The normal plan for ppc seems to be carbo/taxol 3 rounds, surgery and 3 more rounds carbo/taxol I have just finished my chemo last week and now I'm on avastin every 3 weeks. I'm sorry to hear about your mum getting this news so close to loosing her must be awful and hard to cope with.
I don't know anything about alternative medicine as I haven't looked into them yet I'm quite happy at this stage to put my faith into my oncologist I'm waiting for my scan on the 25th September to see how successful the chemo as been.
I really hope you feel better when you start your treatment plan and wish you all the best.
Scared, panicked, that's it! I've been told a number of times that PCC is rare, especially with the 'presentation' I have, which immediately made me think 'does anyone know how to treat this?'
Thank you for sharing your feelings and experience, it really does help x
So sorry you have had this devastating news on top of loosing your mum .
I was diagnosed stage 4 high grade serous OC but was inoperable when first diagnosed due to spread and therefore had 4 chemos ( carbo/taxol) to shrink tumours then surgery followed by 2 more . As others have posted the firstline chemo is pretty standard and can be very effective so I would start your treatment asap whilst still getting your second opinion from RMarsden or Christie both great hospitals .
They normally do a ct scan after 3 chemo cycles so you can then again be assessed for surgery .
I was lucky responded well to the chemo , and didn't suffer too bad from side effects . Surgery was very hard and recovery took a while but I am now back to enjoying life and physically recovered well .
I was diagnosed June 2016 and am now 8 months post chemo / 11 months post surgery and NED (no evidence of disease ) So take a deep breath and start your chemo , I felt better (strange I know ) once treatment had started as at least something was being done .
Not sure if it is an option but I paid for a private appointment (£250) to see a consultant oncologist at another hospital to discuss my proposed treatment and also for them to explain my diagnosis fully as my initial appointment on NHS was very rushed . Was the best £250 I ever spent as he answered alot of my questions and also reassured me I was having the correct treatment and in good hands . I stayed with my original team at Guys and st Thomas .
You could also ring the helpline at Ovacome and discuss your concerns they will be able to go through the treatment process with you .
Sending a big hug and keep in touch . Lots of lovely ladies on here that have great advice for when you do start your chemo . Better stop posting and get ready as have my IV Avastin today !
Hi redlawsy and welcome to the gang nobody wants to be part of but are all so very glad we are. I wouldn't have joined anything like this once upon a time but then things changed, I got cancer and I found all these lovely people here and they're all amazing and are total sanity savers.
I'm so sorry you lost your mum to this bloody awful disease then to be diagnosed with cancer yourself was a double whammy. You have our sympathy xx
As the other ladies have said the chemo is a fairly standard line of treatment and it does the job. I was diagnosed in 2014, had the carbo/taxol and I'm still here causing trouble.
They won't want to do surgery initially they would rather reduce the nodes if possible with the chemo, removal of too many lymph nodes can result in lymphoma.
If you're not happy with your oncologist you can and are entitled to ask for a second opinion but the advice you've been given seems solid.
Ask anything you like on here, we are happy to discuss anything from bowel movements to knitting, puking to recipes, fashion to activities and holidays. Nothing is out of the question just ask and somebody will have the answer for you. Most important is to remember we've all been there and got the tee shirts.
I would suggest you avoid doctor google, you can read so much into so little there and possible scare the pants off yourself needlessly .
Have your chemo, it's doable and keep us informed, it's scary but we really do understand where you're coming from.
Keep as well as you possibly can, big hugs and tons of love coming your way lovely ❤️Xx Jane
Hi and welcome. I can only imagine what you must be going through and please accept my sympathies. To lose your mum and then have this diagnosis is a very great deal to bear.
I have PPC. I was diagnosed 3c with widespread diffuse disease and they could not operate. I had carboplatin chemotherapy and after three rounds the disease had reduced so much they were able to operate, then had more chemo afterwards. It must be very hard if you do not feel comfortable with your oncologist but this does seem to be the standard treatment so I think the treatment options you are being offered are what you would find in any NHS setting. However if it is the oncologist themselves you distrust . Is there another oncologist on the team you could see? Or is it possible for you to travel to London or Manchester to the centres of excellence?
Like you I never join forums however like others above I've found this site so helpful and it can be comforting to know that others are finding their way through a similar experience.
Wishing you well with your treatment and at this very difficult and sad time for you
A warm welcome to the group nobody would like to join in reality but is a wonderful source of support, trust, empathy, information advice and so much more.
Sorry to read about your mum, I can't imagine the burden you must feel having lost your mum and being diagnosed so soon afterwards. There is never a good time to be diagnosed. But this is incredibly sad to comprehend.
Take care and you will have happy times again you just can't see it right now xxx
Ok. So if it wasn't already clear from my first post this morning, I was in full on panic mode after being awake since 4.30am!
I have had ALOT of decisions to make re the logistics of my life leading up to treatment that I felt like I had forgotten to look after myself i.e ensure I was getting the best treatment with a consultant I could communicate with.
You lovely people have made the biggest difference to my day and I now feel a wee bit more sane, and dare I say ready to nail this chemo in 3 days time.
To clarify my diagnosis, I seem to have the Where's Wally of ovarian cancer! The docs have been unable to find the tumour with the PET and CT scan, the only reason they know it's ovarian/PPC is because the biopsied cells from my neck lymph node indicates this. Wally is tiny but fierce it would seem. Oddly the cancer hasn't spread to any of my abdominal organs, only to the lymphatic system. It's because it is in my lymph nodes that it has been classed as 'a stage 4b high grade serous carcinoma, consistent with primary peritoneal cancer'.
So, I wanted to make enquiries with The Christie in Manchester, specifically to find out more re surgery and HIPEC. I was ready to pay my money and take my chance...with a second opinion.
I then contacted my Macmillan Nurse to discuss my intentions and how I'd get my scans etc to The Christie. She suggested that I speak to the Gynae Surgeon at the hospital I am currently under for a second opinion re the possibility of surgery.
After a call with him I am now in the know, about it all!
As Wally is under the radar they will not consider surgery, right now they can't see what they would need to remove! I offered all my lady bits with a side of omentum but was told that as the cancer has spread to my lymph nodes, which is really the problem right now, that needs to be dealt with via chemo. An operation would delay chemo by at least 6 weeks with no real gain at this moment.
He's confident the 'standard' (I don't know about you but nothing about chemo is 'standard') treatment is the best option. I'll be monitored closely and surgery may be required if an area in the future does have tumours present, which do not respond to chemo.
I'm satisfied all my questions have been answered and now I know my chemo is the right treatment. I will gladly still accept a second (well third) opinion from The Royal Marsden but I feel ready tackle this bad boy head on!
I have also received an appointment for an alternative oncologist where I am currently being treated, so I'm hopeful this will work out better too. N.B. Please don't think I'm bad mouthing my current oncologist, the chemo treatment as prescribed has been confirmed as the best option.
I for one feel relieved. I can now spend the next couple of days buying loungewear from Primark (ok ok, already done) and try to focus on attacking what's happening in MY body from the neck down.
Thank you all so so much for your replies today. It's been another odd day in this current life but I couldn't have gotten to this conclusion without your input x x x
I'm so pleased for you that you have had more information, now. It's so frightening getting the OvCa diagnosis without being sure you're being offered the best treatment. I would say we're traumatised by it. It's getting on for eleven years since I was diagnosed and I'll never forget the horror of it. It seemed I would only have a few months. A couple of years later it was in my lymph nodes and my Cancer Nurse Specialist said I would definitely have more Chemo. However, my Onco (now retired) said no, a ten year Trial had just finished showing that women who had no extra treatment until they had bad symptoms lived just as long as those having Chemo. I was so unhappy about it but look back now with gratitude. I had a good few years without being weakened by frequent Chemo. When I did get symptoms, "Watch and Wait" finished and I had more Chemo.
I hope all goes well for you. Sending my sympathy on losing your poor Mum. Keep posting so we know how you're doing.
Hi there, during that watch and wait time where it was in your lymph nodes, was your ca125 elevated? I'm asking g because my mum has it in her lymph nodes now but her marker shot through the roof and she was put on second line chemo after a short break from first line
The first indication it was in my lymph nodes was finding a lump, just above my collar bone. I had one in my pelvis and one in my back, near my spine. I had a scan ( hadn't been having them) and then one zap of Radio Therapy. It was explained that there are three sorts of RT and the sort of RT I had on the back was the sort that only needs one. Still no ca125 blood tests, though. By the time my back one was causing more pain, as it was right by a nerve from my spine, my old Onco had retired and my new one was far more pro-active and I started chemo and regular scans. I had many lymph nodes affected, from neck to pelvis and still do. The chemo just keeps them down a bit. Am back on Chemo, now, waiting for my scan to show whether there's been any success. Strangely, my ca125 has never been very high, even when first diagnosed and I was full of cancer. I think it was 130, then. The highest it's been with the present Course of Chemo is 98.
I do hope your Mum does well and gains a good remission. I feel for you both so much.
Thanks so much for your reply. I had never thought about RT before and that will be my next question when we see the oncologist. I'm sorry to hear about your old income but I'm happy that your new one is more proactive. Unfortunately my mum's oncologist is a bit like your old one, you have to coax everything out of them! Sending a big hug back xxx
Good Luck. I guess you'll have already heard, from reading various Posts, that it's a good idea to jot down in advance the things you want to discuss. I do and it helps me a lot. Solange. xX 😊Xx
Hi Redlawsy, I often have to read some blogs more than once. I had to read yours again I am sorry you have lost your mum to oc. I lost my mum to oc in 2007 then found out I had it in 2015. I know it's early days but when you have started treatment & are in a better place ask for a BRAC gene test.
I have oc in my family also breast cancer so the test was to see if there was a link but I am BRAC negative. As its worked out so are the rest of my family. Take care Cindyxx
Hi Cindy, I'm currently waiting for the genetic testing however the consultant said it's highly likely that my cancer is genetic. I have an older sister too, we are awaiting results for her. I'm sorry to hear of your experience with OC x
Hi Redlawsy, they told me I had a high chance of having a BRAC gene but didn't have it.
If you have a BRAC 1or 2 there is a lot of different treatments available to you. I think it gives you a chance of getting other cancers. Take care Cindyxx
I can't add to the fantastic advice here, but I have found the forum invaluable over the last year. I was diagnosed with PPC 3C in July last year and have had the chemo-surgery-chemo treatment. I was told I was NED in February and am now on Avastin which works slightly differently to chemo.
I'm so sorry about your mum, this disease is so hard to identify and often there are no obvious symptoms. I went through the whole investigation thing a year prior to my diagnosis as I'd reported som abdominal discomfort. My CA125 was raised so I had all the tests and scans but was told I had IBS. I wasn't surprised when I was finally diagnosed correctly. I have had meetings with the main consultant to establish if I could have been diagnosed sooner - as a result he has made changes in the protocol for people who present as I did. He has recommended that women like me should be retested for CA125 levels regularly as this may show the rise which could lead to diagnosis sooner. Hopefully other women will benefit from this change in protocol.
Good luck with your chemo - as everyone has said, it is doable and you always have to remember that it is fighting the beast.
Sorry to hear you've had this news so soon after you losing your mother to the same disease. I would suggest you don't delay starting your treatment while you look around for an alternative consultant / hospital. Carbo Taxol is the standard initial treatment. It would be a good idea to ask why you are not being offered an operation, as they may well be such a compelling reason you may be better looking for a centre that offers lots of trials etc. I was also told no operation initially but this was because my tumour was too large; I also had lymph node involvement but the chemo successfully reduced these and no nodes were removed during my operation. I had two cycles of chemo locally before moving my treatment to London. Avastin is usually added for Grade 4 and also Grade 3 if the surgeon is unable to remove all signs of cancer, providing there's no risk of trouble with bowels. You might notice different treatment options regarding Avastin. Sometimes because different countries have different protocols, sometimes individuals are on a trial, sometimes because of private insurance, or self-funding.
I am so sorry you are so worried and to hear about your mum...I lost my mum to it too, so I know how it feels when it turns on yourself. It is terrifying.
I have loads of info for you if you still need it? About getting a second opinion, where to go and who to speak to, how I did it and what I learned. The BBC made a documentary about my journey and the amazing and pioneering surgeon that operated on me. You will probably still find it on iplayer or Youtube. It is a leading team at The Hammersmith/Queen Charlottes in London. They are utterly amazing.
Let me know if you would like me to PM you?
We are all behind you and with you so don't give up. These paddies are brilliant here. I wish I had found them earlier.
I can't add anything more to all the support given by OC ladies in supporting, advising, informing and empathising with you. We are always here for you and wish you well!
Hello and welcome to the forum. My first forum also.
As everyone mentions, we are all different. I think lots of us had no symptoms, that's the norm with this type of cancer. It's a shock when you're told but once there is some action you at least feel like they're doing something (at last in some cases).
I wouldn't refuse the chemo. They stop it or change it if you have reactions and in the mean time it will help you. I don't think everyone has surgery and even when there is surgery it can be at the beginning, middle or end of chemo.
I hope you find by reading other women experiences that it will comfort you and calm your worries at least a little.
Look luck and all the best wishes in the world. Zena J
Hi, I'm sorry to hear you are going through this especially after losing your mum to OC only 6 months ago, 2 huge life events at once. i'm not sure I can add to the replies you've already had and hope that's helped you feel you are not alone and there is much that can be done. I will say that I know a lady who was diagnosed over 4 years ago and couldn't be operated on, but with chemo and avastin she has lived well with the disease and is still doing so. It is definitely not easy but there is hope. I myself had surgery then chemo, unfortunately it came back but I've had avastin and other chemo and am still here to tell the tale over 3 years later! Do I wish I'd never got cancer? Of course I do, but some of the things I've done and the way I've experienced life since then have meant so much more because of it. Dealing with this diagnosis on top of your bereavement is really tough and I would really recommend you seek some counselling to help get you through it, you can ask your GP, hospital or Macmillan about this.
Just finally I'd echo that it's crucial to have faith in your consultant so I would persevere with the 2nd opinion if you are not happy with yours.
hi redlawsy- so sorry to hear your predicament but it sounds like you are getting the best treatment plan for now. I too have stage 4 PPC diagnosed in July 2015 and was told they couldn't operate initially but an interim scan after 3 treatments showed it was possible to remove most of the tumours (debulking) before continuing with a further 3 treatments and avastin alongside. I have never been NED but my CA125 came down to normal and has not risen as the spread is to liver and lungs, not the peritoneum. For me ca125 isn't a reliable marker and may not be for you either, we are all so different. I do hope all goes well for you and it's fine to ask for a second opinion to ensure you get the best treatment. As others have said, you will get plenty of good advice and you can ask anything on here.
Wishing you all the best
Jane x
It is very difficult to know who to trust when you are filled with the shock of the passing of your mother and now a rare cancer diagnosis. It is very important that you get a second opinion and are able to trust your cancer team to get you thru this crisis. One of the best cancer centers in the US is M.D. Anderson in Texas. While doctors will tell you that you need to start chemo immediately, that is generally not the case and you do have time (weeks) to get a second opinion. As for alternative treatments, I would recommend the book “The Truth About Cancer” by Ty Bollinger. I would also check out this online support group - inspire.com/groups/ovarian-...
I would also ask about Tamoxifen as that has seemed to help some people with this disease. I do not have experience with your particular cancer but have done a lot of research into my own (Stage 2A OC – diagnosed 7-16 – had surgery only – refused chemo – still NED). From what I have read, most doctors know nothing about diet, emotional stress, exercise, supplements (IV vit C, turmeric, ginger root, etc.).
I pray you can find the best team to guide you thru this difficult time but do not underestimate your own instincts on what treatment is right for you. It is still your body and the pressure is great to jump into immediate treatment. Finding the right treatment for you is what is difficult as you don’t want to get to the end of 6 cycles of chemo only to find that it did not work.
Some really interesting pointers there, thank you. I'll have a look at the book you have recommended. And yes, I can't agree enough that we should trust our instincts with our body, even if sometimes it all seems like its out of our control x
Hello ladies. I've been MIA the last few days putting the finishing touches to the organised chaos that has been fast approaching!!!
All of your replies have helped in numerous different ways and thank you, above anything else, for being so supportive and sharing so many personal accounts. It's this honesty that's going to help all of us now and in the future.
I completed my first chemo today and I'm ecstatic to report, I feel fine. I caught a few zeds while receiving the treatment as the anti histamine knocked me for 6 but I've had no sickness or other side effects...so far!
As a number of people warned it can be an anti climax, but dang it's a welcome one!
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