OVARIAN CANCER - FULL HYSTERECTOMY: hi ladies... - My Ovacome

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OVARIAN CANCER - FULL HYSTERECTOMY

hi ladies :-) so just underwent full hysterectomy and diagnosed with stage 1C cancer has my first oncology session and was inundated with information that is so overwhelming in the least .Luckily appears not to have spread but they are advising to do 6 sessions of chemo.....

Have any of you declined chemo due to the side affects it potentially has on your body?? if all has been removed and close monitoring put in place should I still punish my body with he toxins from chemo in hope that if a cell has escaped and attached itself elsewhere will be destroyed???

look forward to hearing from you.....

thank you in advance

am planning to have a second opinion and discuss further re monitoring but would be helpful to hear what your thoughts are

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Hi I was the same as you,I was told the chemo was to mop up any cells not picked up on scans,it was daunting but I got through it,so glad I did it,as I would have worried that I hadn't given myself the best chance,it's a personal choice, good luck either way xxx

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thank you Izzy for your response, how many session and what was the outcome?? did it make you feel sick?? please share its so confusing and your input would be highly valued xo glad you are all ok now !!!

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Hi,I had six rounds of carboplatin, after about the third one I did start to feel sick and exhausted ,mine was every three weeks,so by the second week started to feel better,it is scary, but if you decide to do it, you will get through it,I did ask my oncologist,why I had to have it,he just said as an insurance, I am such a worrier that I just had to do it,I still worry, but at least I know I have done everything, you need to have views from people who never had chemo, this is a brilliant forum,it has helped me so much xxx

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Izzy have you finished your treatment? how do you fell overall? has it impacted on your daily activity etc in what way have they discussed the monitoring afterwards??? OMG have so many q

regards

Alma

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Yes I finished last October,I am on 3 monthly check upsvfor ten years,I had a scan in March which showed no evidence of a reacurrance in the area were I was scanned so grateful,I went back to work in November,I was just so glad to feel normal again,it was a year in April since I had a radical hysterectomy,I appreciate my life so much more now, xxx

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Izzy that is awesome so happy for you!!!! Lets hope it remains like that. gives me some insights to other peoples opinions/ thoughts for me to decide , it is so much to swallow and take in and so overwhelming .

may I ask if you had any side affects from chemo ? what were they? how did you cope emotionally ?and how old you are?? xo

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Hi yes I had side effects they are accumulative, but I coped, emotionally its tough, but I am getting there, just feel incredibly grateful, it was all such a shock as I have never been ill, I am 61,xxx

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Hi,

I've got my first oncology meeting today - I'm also 1c and will be very upset if they suggest only monitoring. To not give myself every chance and then regret it later if I've left it too late is unthinkable. This is the exact reason I went quickly to the doctor when I first suspected a problem. To wait and then be told 'well if you'd come earlier we could have helped but now....'

So no I haven't refused, I'll be on my knees begging for everything they've got today and I'll also be doing anything I can in the way of diet/lifestyle change to help reduce side effects and whatever else. If it comes back after all that - or if they suggest only monitoring, then I'll be looking for a second opinion - so a slightly different perspective for you...

Good luck - may we both get what we want!

Lynn

x

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Lynn thank you for sharing it is all so daunting and scary and I still have a lot of research and info gathering to do before I make final decision and am grateful for you sharing your story so thank you kindly and may we both what ever choices we make make it through and tell our tales xo

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Dear Almav,

Keep going with your research, but bear in mind that Chemotherapy is the standard treatment after surgery for stage 1C Ovarian Cancer.

Thank goodness they found it at an early stage, but this kind of cancer is insidious and has a good chance to recur, so Chemo is the safest option.

Another point for us all to consider, is genetic testing for the BRCA1 and BRCA2 mutation that will affect your likelihood of recurrence as well as getting breast cancer later on. It can give you further treatment options also.

Meanwhile, Chemo affects all of us differently. If you are starting out healthy, you may only feel terribly run down and tired for the first week and begin to perk up for the second and third week. But some of us feel to overwhelmed with fatigue or other side effects to lead anything like a normal life.

You will have trouble eating. You not only get nauseous easily, but it plays havoc with your taste buds, so finding foods you can eat becomes your main concern during this time.

Drink plenty of water and make sure you take your anti-nausea meds before each meal and at bedtime. Not everyone likes the first anti-nausea meds prescribed and a lot of us change to Cyclazine, which is a lot more tolerable, along with Omeprozole, which helps keep food down.

Chemotherapy treatment, usually in 6 three week cycles, will take you almost 5 months, and you will need two months at least after that to recover your strength, so it is a big commitment. Binge out on Netflix and DVDS, let your loved ones wait on you. If you are in England, let the MacMillan Cancer charity help you find a pleasing wig! I love mine!!!!

As so many of us say, better to be safe than sorry.

Be safe,

Laura

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Hi Laura :-)

Thank you for the reply. Yes have discussed today genetic testing for the BRCA1 and BRCA2, forms are in the mail. I have received so much info that I need to sift through and make a decision . thank you for sharing its wonderful to hear other perspectives. How long since your treatment? Unfortunately I'm not in England I'm in Australia. xo

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Hi, I am just in recovery now from the Chemo/cancer. Finished treatment at end of February and got the all clear 5 of March, 2018.

It was all new to me. Never even considered Ovarian cancer, so it was a sharp learning curve and researched like hell as soon as I received the diagnosis.

But I was terribly ill from mine, just came on suddenly and I was riddled with cancer and so sick, I was bedridden mostly for 7 months of treatment. Touch wood, the cancer was outside my organs and not inside any of them except the ovaries.

I only found out about the BRCA mutation recently and I am waiting forever to be tested, although I joined the 1000 Genome project, but my sister has just had her second diagnosis of breast cancer after 15 years and had her test results back as BRCA1 positive. I had no idea before this that Ivarian and Breast cancer were connected genetically!

So, we are all learning. Good luck down under!

Laura

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I had the same diagnosis in 2012

If you fancy having a read of my blog it answers all of those questions.

grapefruitandwine.blogspot....

I had all of those dilemmas and a forest of leaflets to mull over. I made the choices based on what was best for me. I think that’s what we all have to do

Good luck

LA xx

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I certainly will do that now thank you! :-) xo LA

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the blog signed off by Anne Green??

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LA just finished reading your blog, could not stop reading I am so sorry to hear I am crying and writing this and am so emotional and so angry that this is happening to you and all the other OC sufferers,that no cure is available and the pain and suffering that has to be endured , why I life so cruel and unfair???? I wish you the very best, please stay strong, I feel like I have gotten to know you really well through your writings, you are one amazing lady wishing you the best hun xo

ps watched your utube video wish I could give you a great big hug

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Wow you did well to read six years worth of blogs. I’d have been soundo by the end of 2013 lol

I’m doing fine. I’m still here. Best way forward is avoid mirrors and plan some treats. I’m not worried about tomorrow as got to finish today’s party first

Xx

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Hi Hun,

I was 1c, had a radical hysterectomy and followed by 6 months carbo/taxol. I had ascites which were found to have cancer cells in, so the best way forward for me was to have a mop up with chemo.

My personal opinion is you get your best shot with the op and then chemo.

I had a reaction on the first infusion, but, with the right drugs ect did not suffer with sickness and personally I was very active, hardly tired and just got on with life.

I am still here with no disease 3 years later, so you have a lot of thinking to do, but I think a combination of both gives you your best option,

Love

Carole xx

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Hi Carole :-)

that is wonderful news, happy for you! thank you for sharing ,I certainly have some thinking over to be done. can you shre please which drugs you were on??

regards Alma xo

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Carboplatin/pagliotaxol Chemo and Omaprezole one tab daily to keep acid at bay which returned my appetite xx

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I was also a 1C and went into chemo kicking and fighting but about 2 weeks later I felt amazingly better and knew I needed to finish the chemo but was told the new recommendations for 1C only required 3 treatments. I was much better after the 3 chemo treatments but then I did high dose IV Vitamin C treatments and my CA125 already very low dropped another point and I felt the cancer was completely gone. My last chemo was 1 year ago and I am still in disbelief this disease can appear and disappear in 1 year total. Be strong and vigilant and hold determination that you can succeed.

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Hi Sharon

I am so happy that you are feeling better and that you are cancer free for the last 12 months great news lets ope its for the rest of your life

thank you for sharing stay well and keep feeding the positivity we all need it!!! thank you take care xo

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Hi,

I’m going to give you a contrary opinion. I am classed as Grade 1, Stage 1C. My tumour ruptured during surgery. But the MDT, specifically recommended that I NOT have any adjunct chemotherapy. Their reasoning is the low grade cancers don't respond as well to chemo, chemo works best the first time you use it, and if we do it now, there is "less in our arsenal" if I have a recurrence. And since I was NED after my surgery and all my samples came back clear, there's no way to measure results of chemo treatment. Chemo is likely to do more harm than good to my general health. Statistically, they tell me that I have less than a 10% chance of recurrence.

I’m closely monitored every 3 months. My oncologist orders a CT scan annually. So far so good. I’m still NED and my CA-125 is 7. I feel fine and completely back to normal. It’s been 15 months since my “big op” and 18 months since my diagnosis.

I know chemo is part of the NICE guidelines for stage 1C but discuss all the factors with your team and don’t assume it’s a done deal.

All the best,

C xx

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Hi Cheryl

omg thank you thank you for sharing

such a big decision to make and I am afraid of doing my body more harm than good at this time like you said they tested all results came back negative but they want chemo as a precaution to so called" mop up the residual" just in case

I have had no tests since the op to see if there are any indicators showing remaining cancer cells in my body, may have to get that tested before they lock me in the chemo sessions. op was only 4 weeks ago

you have made my day

where are you located?

thank you c xo

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Hi,

I’m in London and I’m being treated at UCLH Macmillan Cancer Centre. I love my gyne oncologist and I truly believe that she is doing what is best for me. It also depends on the grade and type of cancer that you have (I’m low grade endometriod) but it it’s certainly worth discussion. We are not “one size fits all”.

Cheryl xo

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Also 1C. High grade serous. Is this what you are?

If you are, I wouldn't hesitate. As others have said this is an inidious disease. You seem to be clear, then find the beast has re-appeared.

I am quite sure that if I hadn't had the chemo after my op I wouldn't be writing to you now. I am very well despite having had 3 further lines of chemo and having active disese.

I think you're wise to focus on supporting your body during the toxic assault (making sure that whatever you're doing doesn't interfere with the effectiveness of the chemo), but I think that's a different matter from doing without the chemo. x

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Hi i am 58 stage 1c high grade oc. I had surgery a year ago followed by 6 cycles of carboplatin at 3 weekly intervals. Due to the risk of recurrence i did not want to take the chance without chemo. Carboplatin for me was very doable. The only side effects was nausea constipation and tiredness for the first 5 days which i managed with medication.I did not loose my hair. It just thinned a bit. After 5 days i felt better. I finished chemo in december.

I feel nearly 100% back to normal.Everybody is different of course and you need to make the right decision for you. Ladies on here are always happy to advise and some have been so brave with later stages and have gone through chemo numerous times.So for me it was an easy decision to make.i have had the all clear scan 1 year on and life carries on for us to enjoy.All the best. You will make the right decision. Xx

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I refused chemotherapy, but my circumstances are not the same as yours - I'm almost 68 and Stage 4b. My OC started as epithelial serous, but has differentiated into non small cell neuroendocrine and was present in the inguinal lymph node, though had not spread up through the body. I had the debulking or cytoreductive surgery, where they removed everything that looked suspicious very successfully, and had a PET scan around 4 weeks later, which showed no sign of any cancer growing. I wrestled quite a while with the idea of chemotherapy - the hospital wanted to start after 4 weeks, but I held them off till I'd finally resolved what I wanted to do next, and told them 4 weeks later I did not want it. There is a book called The Cancer Whisperer by Sophie Babbage which helped me clarify what to do - it may help you too. That doesn't mean I'm not doing anything to try to stave it off for a while longer; I've made changes to my diet, cut out sugar completely, trying the cannabis protocol (which I absolutely hate!) out of curiousity really, to see if it actually does anything to the cancer stem cells presumably still circulating round my body.

I believe I might not have refused chemotherapy if I was, say, Stage 1 like you and, say, 15 years younger, because the idea of dying would have been much more horrific back then, I'd have just been so paralyzed with terror I'd have gone along with anything the doctors said without questioning their advice. And Stage 1 is way better than Stage 4b, which makes a huge difference to treatment outcomes. Which is why I'm recommending The Cancer Whisperer book to you to read, and don't let the docs hurry you until you're sure. It's not an easy decision - chemotherapy damages the body, both in the short and long term, and one always has to remember that the doctors can only offer what they have in their arsenal to treat this disease with (regardless of how effective it is or isn't) because other, less damaging treatments are currently either not freely available, or not there at all. Chemotherapy is always more effective the first time it is used - but statistically, most women end up with 2nd, 3rd and even 4th lines of chemotherapy, all of which become less effective every time they're used; however, for those lucky enough to be discovered at an earlier stage, like you, follow up lines of chemo are less likely later on.

In the end, it's your choice, your life decision, and no one else's, we're all different and at different stages of life, never mind cancer. I wish you well and hope you settle to a clear decision soon.

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Hello Almav, I had surgery to remove my ovaries and tumor March, 2017. I was stage II invasive serous borderline tumor. No spread, no lymph nodes or liver involvement. My gyn/oncologist recommended Chemo to prevent any microscopic cells from attaching. I had six treatments of carbo/taxol at three week intervals from May to September, 2017. Before each infusion I was given medication to prevent stomach upset, allergic reaction, and nausea. I never felt sick. The three week interval helps to restore energy and your body. After the sixth treatment I was very tired. I also had neuropathy of the finger tips and the balls of my feet. My finger tips are fine now, my feet still a little numb in spots. Since then I go every three months for CA125 and examination. Last week I had CT Scan with contrast. All results have been good. I don't regret having the chemo, I think I would regret if I hadn't given myself the chance to destroy what was inside of me. I also made sure to take good care of myself before, during and after. Eating well, even when not hungry, plenty of fluid and rest. Also family and friend support. Only you can make this decision, I wish you nothing but the best.

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Hi Almav I was diagnosed with stage 1 c , grade 2 in May last year , had FAH and cyst was sent off to be checked , came back positive , my gyno said he was happy and confident he removed it all but it ruptured when being removed and that was why they recommended having 6 doses every 3 weeks , he said basically it was to get any cancer cells that may have escaped during the rupture , but also there might have escaped . If you ask me did I do the right thing going through with chemo I’d say yes 100% definetly . It was hard I won’t lie I had horrible side effects , felt terrible , lost most of my hair even although I used the cold cap. It’s all by with now and I get 3 month check ups with ca125 blood test , I’m in remission and I know that I’ve done everything I could .

Keep positive

Cathy xx

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Hi another stage 1c2 here😊 (endometroid. ) i reluctantly agreed to have chemo as the tumour ruptured 5 days before surgery. Thankfully all washing and biopsies were negative. I had carboplatin only (allergic to taxol) and am 1.5 year's since last treatment all good so far. Wishing you all the best with your decision. "Knowledge is power"

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You really need to know your sub-type and grade whilst doing research as not all 1Cs are the same!

All chemo is a balance between potential risk and potential benefit. There have been a lot of threads about the dilemma with chemo for those fortunate to have been caught at this early stage. If you use the search box, you'll hopefully find some useful discussions.

I had a 1C (surgical rupture) grade 1 Mucinous tumour. I had 6 x Carboplatin finishing five years ago and have been fortunate to have NED (no evidence of disease) since.

You will, I'm sure make the best decision for you.

Wishing you hope and strength, Sx

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Beautiful ladies :-) I thank you for all your feedback and thought, it is much appreciated, thank you! After a lot of research , chats with you ladies and couple of cancer sufferers, local GP who referred me for a second opinion, I HAVE decided to GO AHEAD with Chemo, as we are all different side affects will differ and hopefully all of us beat this disease and return to some normality again.

I thank each and everyone of you for time you have take to reply to me, again thank you, from the bottom of my heart.

I hope we all beat this , get all better and I think it puts a different perspective on life and let us cherish every movement we have with our loved ones.

please stay in touch and stay well xo

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