New to the 'big C' game : Hi hello bonjour hola... - My Ovacome

My Ovacome
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New to the 'big C' game

Mrsc12
Mrsc12

Hi hello bonjour hola

So I am totally new to all this and I'm not 100% that writing and posting things is the right way for me ( most blogs or forums are full of banter and easy reads regardless of the subject) but here I am, let's see how it goes.

On 6th July I went for my post op appointment, I was nervous but having had many of them I knew that it was most likely the same scenario... this time it wasn't. This time I was told I had cancer, low grade serous carcinoma stage 3b to be precise. I always knew there was a chance of cancer and the surgery I had was all done in case of the worst outcome (the cyst they found was sinister) But I never really thought that it would be that outcome.

My surgeon was called in to see me as I had seen a registrar, Mr A told me everything went well but I do have cancer no need for chemo and ct scan in 3months.... pretty much as blunt as that. I then met my cns who is lovely and explained things a bit better but I left feeling numb.

At home after doing the dreaded googling (Dr Google can't really tell me much worse. I had all ready had the cancer card given to me) I found more info and a fbook group. It became quiet clear that although it's not unheard of the vast majority of women have chemo and a hormone inhibitor as a treatment either before or after surgery. So why have I not had these options given to me?

Fast forward to today where my head has recovered from the ton of info from the past few days. I have been back to the hospital seen Mr A and met Dr H the oncologist. Dr H has said he isn't happy not doing anything but isn't sure what is best to do (not helpful) he went into detail for his reasons and agrees that a 2nd opinion is best for me. I am hoping to start that process today, in with gp this afternoon and hopefully it won't be a long wait.

Has anyone else gone down the 2nd opinion route? How fast did things move?

Sorry if it's all long winded, you can now rest your eyes x

18 Replies
oldestnewest

Hi and welcome to our group. I am also a low grader and as my Oncologist by her own admission, doesn't know a lot about low grade I have recently been to see my GP about getting a second opinion. I did my research beforehand and went armed with a Resume of what I was diagnosed with, dates and treatments etc and I also provided my GP with a list of low grade specialists in the UK. That was four weeks ago and I'm still waiting to hear. I'll let you know as soon as I hear more, Kerry.

Hi Kerry

Thanks for responding! Can I ask which doctors you found? I have been recommended a Dr Gourley based in Edinburgh, apparently he often works alongside Dr Gershenson @ M.D Anderson one of the world renown experts in low grade (so I'm told) my oncologist was very keen to hear what Dr Gourley has to say. My cns said a referral to Christies takes about 3-4 weeks but said it could be different with it being in Scotland, I think I would be tempted to look at a private consultation if it takes that long.

Hopefully you hear something soon! Jen x

Hi Jen, Charlie Gourley from Edinburgh was on my list, as were Martin Gore and Susanna Banerjee at the Marsden and Gordon Jayson at The Christie. Good luck, keep me posted and I'll do the same, take care, Kerry X

To the right of this page you will see pinned posts - getting a 2nd opinion. If I were in your situation I would absolutely want to see someone else. Are you near the Marsden in London or Sutton - or the Christie in Manchester. You need Cancer specialists.

My first CT scan was useless, the surgeon at Marsden ordered another one which was a lot more thorough, I said the two CT reports looked so different they could have been re different people............he said we are more used to seeing cancer.

Good Luck Lyn x

Mrsc12
Mrsc12
in reply to lyn1987

Hi Lyn

Thanks for the reply!

No I am based in Lancashire, I have managed to get a referral sent to Dr Gourley today, he is in Edinburgh and specialises in ovarian cancers.

Let's hope it won't take too long and I get somewhere.

I haven't had a ct scan since my op so I hope that another will be done soon, I'm scheduled for one with my current team at the end of August/ beginning of September not sure if they will wait for that. Jen x

lyn1987
lyn1987
in reply to Mrsc12

That is fantastic news, I wish you luck with the referral, the right specialist will have you sorted in no time!!

Take Care

Lyn xx

Hi

Because I bombarded my oncologist with information (note I gave her information rather than she gave me!!} she asked me if I wanted a second opinion to person I was quoting. Prof G at RM. He and SB there work closely with Gershenson at M.D. Anderson in the US. I had my appointment within 3 weeks. Not too bad.

Definitely worth it as my oncologist wanted to do a watch and wait - but never had symptoms so did not know what to watch and wait for. I got the monitoring regime I wanted and am happy with.

Definitely go for it and let us know how you get on.

Fay

Ps I am also a low grader

Mrsc12
Mrsc12
in reply to Petrolhead

Hi Fay

Can I ask who SB is and RM? I'm guessing that Prof G is Dr Gershenson?

What was the monitoring regime you chose?

I have been on the phone to secretaries here there and everywhere this afternoon but think I've got my referral for Dr Gourley sorted. Prob wouldn't of got anywhere if I hadn't personally got involved but that's another story. Jen x

Petrolhead
Petrolhead
in reply to Mrsc12

Hi RM is Royal Marsden. sB is Sussanna Bannerjee as mentioned in a previous post and Prof G is prof Gore who works with SB at RM.

my monitoring regime is bloods every 3 months. CA125, CEA and CA19-9. And scan every 6 months for 5 years. My local hospital have tried to alter this but I reminded them of RM reccomendations and that I would take it further if not adhered to.

As said in many posts you have to be your own advocate.

Fay

I think if your oncologist isn't sure what the next step is or if not to give you chemo, then your next option is a second opinion as soon as possible. Me being me would prefer treatment but having said that, you don't seem happy with your Onc right now so it is right to have another opinion

All I can add is that if your based in Lancashire you have the biggest and one of the best cancer centres on your doorstep namely the Christie. Prof Gordon is a brilliant clinician and a lovely man who is one of the leaders in the field of Ovarian Cancer research and treatment . I would definitely recommend to try and see him too, he leads quite a few research projects and he and his team are so personable and caring I can’t recommend him highly enough

Best of luck with your journey and welcome to this great forum xx

Bev xx

Welcome to the party 🎈

I’m not sure what your oncologist is finding so difficult. Is your tumour solid or fluid?

Did you look up your histology result on the FIGO scale?

Most are offered chemo if it’s stage 2 or above for low grade and stage 1 or above for high grade. Mainly to destroy any cancer cells left wandering after surgery. Particularly those not visible to the naked eye

Have you decided who you wish to see for a second opinion? I have followed that route twice. I was diagnosed stage 1C. I asked for a second opinion on both recurrences but carefully chose the oncologist based on recommendations, mortality rates and experience

Where are you being treated?

LA

I decided to pay for a second opinion rather than wait. It cost £350.00 and was worth every penny.

Hiya and sorry to welcome you to this community, but happy to try and help. I've been diagnosed with stage 3a borderline and low-grade serous ovarian cancer (OC) in 2015.

Like a few others here, I was with Prof Gore at the Royal Marsden (while still living in the UK), and definitely felt in good hands. Even now, I still seek his advice as a second opinion. It's quite important to seek out a specialist oncologist who has extensive knowledge about low-grade OC, and can offer access to clinical trials.

The problem with low grade OC is a) that it's rare (which means not all oncologists have extensive knowledge about it) , b) that it tends not to respond so well to the standard treatments like chemo therapy and c) that it's a significantly different cell type from the more prevalent high grade OC. While there is some research going on (e.g. with MEK inhibitors or anti-hormone treatments), surgery still seems to be one of the best treatments.

Thus it is not unusual to be on watch & wait more than on chemo or parp inhibitors, but treatment choices really vary and depend on the individual. My oncologists tend to advise to avoid playing all of our cards at once. Rather they space out the treatments judiciously, and operate whenever possible.

The good thing about low-grade is that it grows slowly; both the remission and overall survival times tend to be longer. That said... everyone is different and it may not come back at all for you. All the best. Maus

Hi there a d welcome to our funny family. I'm so sorry about your news, but we are all here to help you.

If you need any advice on second opinions, please drop me a pm.

I had a fantastic experience with a second opinion. They were crucial to me getting the right treatment. But it's important you speak to the best teams. xxx

Sometimes whether or not you are offered chemo depends on what type of oc you have. I have granulosa cell tumours, a rare type of oc, & it is usual, in Britain at least, not to give chemo after surgery, as it is often not very effective with gct. Di

Thank you for the replies!

I had a borderline serous tumour removed 2yrs ago that was stage 1c. I had a tah, bro and fatty tissue for biopsy from omentum when they found the new cyst. They have since told me that it is low grade serous carcinoma stage 3b, it had spread to the lining of the womb, the other ovary and omentum malignant cells were also in the free fluid they biopsied from the pelvic area. I have been told that all but my right ovary looked normal so the cancer isn't visable to the naked eye.

My current oncologist has got a good idea about the type of cancer and treatment that could be used but I think the mdt team think doing something to a 'healthy' person by chemo or hormone inhibitors might cause damage than good. My oncologist isn't keen on not doing anything but isn't sure what is best, he is interested to see what the 2nd opinion says. I keep being told how rare the cancer is and it's rarer to have had a borderline change to malignant and how rare it is for my age (30). I just can't see how not doing anything when they know malignant cells are there is the right way for me.

I have been referred to Dr Gourley since yesterday so I'm now waiting for him to see me, will keep you all updated. Jen x

cancernetwork.com/oncology-...

I get your anxiety and frustration. I'm same stage but high grade. How optimal was the debulking surgery? I am in the US and was able to get 3 second opinions. I found that all the interesting research is in maintenance and recurrence. This article, if the link works, says that low grade does often morph from borderline. This doctor says she does chemo on low grade but it basically doesn't work. So you might be weakening your body and immune system for no purpose. But do go to Edinburgh. You might be able to set up an online consult with MD Anderson but they probably would want your records.

Good luck with everything. At least you know it doesn't grow so fast so you have time to pursue second opinions. Your current gyn onc doesn't sound knowledgeable enough about this kind of cancer. xoxox

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