So scared: Going to another specialist today due... - My Ovacome

My Ovacome

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So scared

Deb52 profile image
22 Replies

Going to another specialist today due to the latest scan results of my liver. They found lots of lesions and masses. What can they do for the liver. I’ve written to this group before but I need some of your strength now. Xoxo

Deb

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Deb52 profile image
Deb52
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22 Replies

Not sure what the treatment protocol is as I’m not yet “there” but you have all my strength and wishes for a workable solution. More experienced ladies will chime in soon. Stay strong

Deb52 profile image
Deb52 in reply to

Thank you . 💜

Lily-Anne profile image
Lily-Anne

You can ask for a biopsy to be certain that it is OC. Have you had a PET CT. if the take up is just over the upper limit it can be fatty tissue. So the scan can be a good alternative. If you’ve had one do you know the readings?

LA xx

Deb52 profile image
Deb52 in reply to Lily-Anne

I have uterine cancer. Diagnosed in Feb. 2017. Had a complete hysterectomy along with the removal of the omentum. Had 18 weeks of taxol/carbo. Cancer came back. Tried avantis and doxil. Ca-125 rising again. Might be a candidate for a trial. Scan shows cancer is now in my liver. A biopsy is next but wouldn’t it be wonderful if it came back showing no cancer? The scan showed the lesions and tumors have grown though. Thank you for your response. Xoxo

Deb

I don't have any direct experience as yet to share, but I have read that in some countries micro ablation is being done to address multiple small tumours in the liver - it's not a cure but a management tool. May be worth enquiring about. Best of luck, Dawn xx

Deb52 profile image
Deb52

The specialist today didn’t mention anything like that. I guess I’m just feeling like I’m on a roller coaster. Thank you for your information. Xxoo

Neona profile image
Neona

I have mets on my liver and am on a phase one trial for the drug AZD 6738 which has kept it stable since I started just before Christmas and with a small amount of reduction. This is one of the new targeted therapies aimed at inhibiting the cancer cells without damaging healthy cells.

Maxjor profile image
Maxjor

Deb--when you meet with your next oncologist, ask about PARPs. I know that some people with liver mets have been prescribed them and although this is fairly new, some have said it had reduced the lesions, kept them stable and in a couple of cases, they have not shown up on the CT scan. You do need to meet some qualifications to be considered. Not sure they are available to you but add it to your questions. Good Luck! Judy

Deb52 profile image
Deb52 in reply to Maxjor

I certainly will ask. Thank you so much for this information.

xoxo

Debbie

RonLitBer profile image
RonLitBer

I would echo Bowradwan's response and explore ablation. There are several forms from freezing (croyablation) to heat (as well as others). It is as stated not a cure but a management tool. It has limitations and not doable for everyone. On the positive side it is not toxic, can be repeated and is relatively inexpensive. It is a sub specialty of interventional radiology. Basically they insert needles/probes (like a biopsy) into you and ablate your tumours. It is not often done for metastatic ovarian cancer but liver mets are more commonly done. There are locations in the States that do it including the Karmanos in Detroit and the Mayo Clinic. I have found it an uphill battle to access it where I live and have found a lot of resistance to it but that is not necessarily reflective of its efficacy. You may similarly need to push and probe to get anywhere. I guess it is called advocacy.

I am going to assume you are in the United Kindgom.

This may be helpful as there are some videos on it that are worth watching.

bsir.org/affiliate-groups/i...

I would contact the following physician:

leedsth.nhs.uk/consultants/...

She does not deal with metastatic ovarian cancer to the liver (if that is what you have) but may be able to direct you.

I would also send you to a publication titled "Image-guided percutaneous cryotherapy for the the management of gynecologic cancer metastases". It is in Science Direct, Volume 111, Issue 2, 2008, pages 202-207. I have copied a link below that hopefully you can use to view the clinical trial:

sciencedirect.com/science/a...

I am not endorsing these two locations just providing their contact/information:

Also:

fudahospital.com/en_asp_new...

Also:

cryosurgery.at/index.php?go...

Deb52 profile image
Deb52 in reply to RonLitBer

Thank you so much for this information. I am actually from the US. My next step is to try to get an appt. at the Mayo Clinic.

Prayers and healing thoughts to you.

Debbie

RonLitBer profile image
RonLitBer in reply to Deb52

The Mayo does ablation and from what I know want you to come in before they will give an opinion. Personally I have found the Karmanos Cancer Institute in Detroit Michigan to be far better to deal with. The Karmanos will let you send in your CT scan and will have their tumour board meet and decide if you might be a candidate. Ultimately you could try both and see what each one says. It would be an interesting comparison. I am attaching a video of Dr. Hussein Aoun who works at the Karmonos speaking about cryoablation. His nurse practitioner is Barbara Adam and her phone number at the Karmanos is 313 576 8235. She is one of the co-authors on the paper I sent to you. Best of luck to you.

karmanos.org/Video/View.asp...

Deb52 profile image
Deb52 in reply to RonLitBer

Thank you so very much for this additional information. It means a lot that you took the time to write me. X

Xoxo

Debbie

RonLitBer profile image
RonLitBer in reply to Deb52

I think that is what these forums are about. Sharing information and support. Goodness knows we need it.

Rachelwu profile image
Rachelwu

May God give you the strength and power to overcome this hurdle. Do not get stressed out and I am sure your doctor will take very good care of you!

Deb52 profile image
Deb52 in reply to Rachelwu

Thank you so much for your encouraging words, Rachel. I wish you good health.

Debbie

Lizchips profile image
Lizchips

You only need a small section of liver, they can attach a small section of a healthy liver to yours it will function as one. Stay positive. ❤❤❤Liz

Deb52 profile image
Deb52 in reply to Lizchips

I have never heard of this but it seems I hear of something new every day. Thank you Liz for sharing this information with me. xxoo

HI Deb, Good advice from our lovely friends, some times we have to be pro active in our treatments ask as many questions as possible and that second opinion can also help , keep your chine up take care Lorraine xx💙💙

Deb52 profile image
Deb52 in reply to lorraine71-Australia

Thank you Lorraine. I’m going for another opinion to MD Anderson in Texas. I’m constantly praying that something will help. Again thank you. Xx

Nancy222 profile image
Nancy222

Good luck with your appointment at MD Anderson. I've got mets to my liver (clear cell) and am currently on Caelyx to halt the spread. So far I feel better than I have in a long time.

So much depends on the tumour, how deep it is (one of mine is deep) and how many cells are showing as cancerous.

Keep us posted and good luck. You've got options. XXOO

Deb52 profile image
Deb52 in reply to Nancy222

Thank you so much, Nancy, for your words of encouragement. I wish you good health and continued good days. Xoxo

Debbie

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