Still confused

[Manchesterlady]

Just got back from st Mary’s after seeing consultant . A very long day and still confused . I have “strands of thickening in oment and peritoneum . A very small Tumor on ovary , I was offered open surgery on Tuesday , or a laperoscopy to have a look round and do a biopsy , to be followed by chemo . I chose the laperoscopy . Worried now that I’ve made the right decision . I’m exhausted ,

[Irisisme]

have they said they would remove anything found, or take a sample and close? If they want the option to remove what they find do ask who the surgeon is and what experience he/she has with gynaecological oncology. If they are going to be removing lesions you need a surgeon experienced in gynaecological oncology. If it's just a biopsy or ovary removal probably not, but will they know before they go in? Sorry to pose more questions.

I think you ought to call Ovacome and ask what they think about your options. You also need to go back to the oncologist and ask for a better explanation- you shouldn't be coming away from your appointment with so many questions, they should be answering all of them.

Iris XX

[ScardyCat40 in reply to Irisisme]

I had my surgery at St Marys and the surgeons are gynae oncologists. I had a laparoscopy first before having the full on hystectomy and debulking surgery. They have an excellent team of Macmillan nurses at St Mary’s. You should have been assigned a nurse at your first appointment.

I would really recommend using them as they can advocate on your behalf and they are much better at explaining things than the doctors.

[Manchesterlady in reply to ScardyCat40]

Hi scarddycat40

Thanks for your response , what could they see with your laperoscopy , did you have chemo after it or was is straight into open surgery.i have had a nurse assigned to me and she was lovely . Did they look after you well in st Mary’s ?

[ScardyCat40 in reply to Manchesterlady]

They wanted a viable biopsy so that they could confirm it was ovarian cancer and the type/grade. Then I had to have the full on surgery to be honest I wish we had skipped the laparoscopy and just had the surgery. A month after my hysterectomy I started chemotherapy but the norm is to wait 6-8 weeks. I just recovered well from surgery so we decided to crack on

[Tesla_7US in reply to Irisisme]

Iris, you are right on the mark!! These options don't really make sense. More information is needed.

[Roobarb1]

Hi there I’d be a bit puzzled by that too I think so I would phone GP/support nurse for more information I think, as you should not come out being puzzled - do you have a CNS?

However, it doesn’t mean you have made the wrong choice! I had an emergency laparoscopy as had fluid in tummy and ct scan had shown “something sinister” on Omentum, consultant said stage 3 oc. However, When they went in, they actually found a ruptured cyst, and could see no disease otherwise. They took the ovary and remains of cyst out and biopsied it, which did show cancer, so am having further treatment, but an earlier stage of cancer.

However what the consultant said to me, is they trust their eyes over a CT scan, so an investigative laparoscopy with biopsy, often shows them a much clearer view, so it is not necessarily a bad choice, especially if they get you in quickly.

I did not find the procedure too terrible, 3 punctures wounds, and an incision where they took the ovary out. And it gave me a treatment path going forward, so helpful for that.

I’m not sure this will help, but definitely ask more questions and you do not need to do anything you are not happy with, big hugs xxx

[Sunfleury-UK]

I would really support the suggestion to call Anna at Ovacome tomorrow. You've had an exhausting day and I dare say had little sleep last night. I would very gently advise you try and 'press pause'. Anna will help you to go through what you've been told and I'm sure is best placed to offer expert guidance. Take very good care of you, Sx

[Nicky100]

I think you have probably made the right choice. But ask your CNS if you are unsure. The Doctors will advise you what they feel is best.

Love, Nicky xx 💕❤️

[Tesla_7US]

Manchestergal, Your options, and their order of sequence, depend on what has been revealed in your pre-op PET/CT, bloodwork and other diagnostics. If you have a heavy disease burden primary chemo is usually the first step to make surgery easier/safer and to kill off as much cancer as possible. Discrete solid tumors don't like to be cut into for biopsies. They should be removed in their entirety, intact! Please get more information. Also, you absolutely MUST have an experienced Gynecological Surgeon, not some ob/gyn or general surgeon. Keep us posted. T

[Sunfleury-UK in reply to Tesla_7US]

Hi Tesla, MG is being treated by Gyny-Oncology team at St Mary's Manchester. The surgical team has an excellent reputation and are part of a network with THe Christie which is one of main centres for cancer care in the UK. I know that ScardyCat40 is in an excellent position to help with local information and experience of being treated at the same hospital. (She's also one of the most well-informed and wonderful people I've met since being diagnosed!!) Sx

[Tesla_7US in reply to Sunfleury-UK]

Thank you very much for sharing this info with me. Being from US I have no idea of care available in UK. I respect this wonderful forum and do not want to give incorrect info!

[Sunfleury-UK in reply to Tesla_7US]

Important, I think, to try to understand where posters (especially new ones) are coming from both geographically & emotionally as well as medically!! Sxx

[Maus123]

If your experienced medical team offered you both choices, then you can be sure that they should both be viable ; whatever you decide will constitute a feasible way forward. What they find through either procedure will determine the next steps, so I would just go with the approach you feel most comfortable with, knowing you are in good hands. Not to worry about wrong decisions.

--

I also understand it's incredibly hard to tell from the outside, if and how much and what kind of unwanted growth might be found in the abdomen/pelvis. Only by actually looking i.e. by opening up or using a laparoscopic camera, plus subsequently determining the cell type in a lab from a tissue sample, can they determine how you should be treated, how extensive the surgery will be and whether the laparoscopy is sufficient or not.

I had trouble coming to terms with that truth, when I was first diagnosed. Thus I kept haggling with the resident gyn. onc. professor in order to avoid giving my surgeons a blank check for exploratory surgery. Instead I absolutely insisted that I wanted to be woken up in the middle of surgery so I could be part of the decision about what they'd do next. Finally they managed to persuade me that that wasn't feasible at all, and I'd have to trust them for those few hours on the operating table. What can I say.. that worked fine, and the prof still remembers me .

For the recurrence surgery, I was actually offered a similar choice as you. Start with a laparoscopy, which could keep the overall impact of surgery smaller if that is sufficient to get a biopsy or to take the suspicious lymph nodes out. With a provision to turn it into a laparotomy either then and there or at a later point if the little camera picked out wider spread disease. Or have the bigger incision/surgery right away, because that would offer me the best possible chance to check all pelvic organs for potential tumours and remove everything untowards. I went with the laparotomy (big incision), and they didn't even have to push me this time. But both approaches would have been valid.

You're walking the walk.. keep going.

All the best. Maus.