I was diagnosed with OC last July. 6 weeks of taxol/carbo then another 6 weeks of chemo along with RT (Extra chemo was for clinical trial)

I had the Ivor Lewis surgery this past December with no complications.

I have been seeing my oncologist about once a month since. Everything has been going well considering. What is typical for checking/testing for any reoccurrence or spreading in the future?

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  • Hi Cornfed, I had Ivor Lewis 1June 13, and had one month then 3 month check ups with surgeons, after my next check up end May they said it will slip to 6 month check ups. I also had 3x chemo after surgery due to unforeseen lymph gland involvement.n

    So far so good. They'll always see you quickly if you feel there's a problem.

    I don't see oncologist any more. It is usual not to scan after surgery but to look for symptoms instead. It is quite un-near nig just waiting and seeing but it's what we all do.

    Good luck, hilary

  • Hi Cornfed,

    Glad to hear you're doing well. As you're participating in a clinical trial the minimum frequency of follow-up will be determined by the trial protocol - if you ask your consultant the name of the trial (or the trial identifier), you can look up the details on clinicaltrials.gov (a US-based website for clinical trials registration). I would guess that your monthly visits would become 3-monthly at about 6 months. Outside of a trial, I had follow-ups every 3 months for the first year and have now gone to 4-monthly checks during the second year. These involve a review of blood results including tumour markers and a face to face consultation. I had a baseline scan post-chemo to set the scene. It will be interesting to see the results of the trial you're partcipating in as the US routinely uses chemoradiation whereas the UK routinely uses chemo alone (pre and post-op) for locally advanced OC (both based on trial results in the respective countires).

    David

  • You will probably have checkups that gradually get further apart as you progress. The surgeons are interested in the general healing of your surgical wounds, any pain or complications with nerves, and so on, including how well your newly rearranged digestive system is coping. From the cancer side of things, you may have scans to check on whether all the cancer has been cut out and removed by the chemotherapy because that tends to be relevant to the chemotherapy treatment. So it would be something like 3 months, 6 months and 12 months checkups for five years or so.

    After the first phase there tends not to be a scan just to see whether cancer has returned / spread or not. Some countries do it, but it tends not to happen in the UK. The disadvantage of continuing to do scans is that for some patients there is a feeling that they feel no longer cured until they have had that next scan, and the appointment assumes enormous proportions in people's minds.

    There is a trend to try and make the checkup arrangements much more individual to each patient, depending on how people regard the prospect of scans, whether they need the reassurance, whether they have other conditions that complicate things, and so on. What may not happen very effectively is when patients feel instinctively that something is wrong or has changed. It is more important to report that and have a check up then rather than necessarily be governed by 6 monthly check up appointments. The other thing that is quite important is to be able to make an appointment to work out solutions to digestion problems or other difficulties; these may be more in the field of the specialist dietician or gastroenterologist than the oncologist or surgeon, so it can be quite important not to get those issues mixed up with the routine cancer-related checkup.

    I agree that it is a bit scary when you do not have cancer-related scans, but it is also part of the process of rebuilding confidence in your own health and in what your body is telling you. It may be a bit like driving your car and not needing another driving test to prove that you can still do it safely, but if you start bumping kerbs you go back for another driving lesson.

  • Thanks for the replies. The only Dr I'm currently seeing is my oncologist. I never had a regular Dr prior to this. If I have any issues with anything I get a hold of him. I had surgery at Mayo in Rochester Mn. Which is a couple hundred miles from home. I chose them because they preform the IL procedure and felt more comfortable with that surgery vs the trans hiatal.

    I had one follow appointment about a 5 weeks after surgery. They said they would have a other follow up at about 6 months of I needed it. If not they said to keep in contact with local doctors.

    Still learning how to eat. I feel I've been lucky so far, no dumping or nausea. I was on a feeding tube for one month after surgery. That was the surgeons normal practice. I lost some weight then went straight into solid foods without much issue. My biggest issue is eating too much then getting a backed up feeling that goes away in about a hour.

    Is it possible to stretch the stomach in the lower extremity over time or not. I've been pretty much doing 3 meals a day than light snacks here and there.

  • Well started having middle back aches. Scan done. On the liver now. :-(

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