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Hughes Syndrome APS Forum

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beccafullcircle profile image
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Good morning everyone. It has been a few weeks since I logged onto the site to give an update. I have been to OHSU two times this last month, traveling to Portland Oregon. This next week I will be traveling back and having surgery. They found unknown mass, they are taking my last ovary, they believe it to be related to Endometriosis and are testing me for ovarian cancer. They are bridging my blood right now preparing for the surgery. The mass has grown into my pelvic wall into the muscle and sits on my bowel area. The pain makes sense now that they have shown me the mass. There is also one on my Kidney. They just did more scans this week and blood draws, screening me for cancer which I do not believe that I have and they are confident that it is related to blood/Endometriosis. I have not been diagnosed with this before, it makes sense now that I understand it from research and doctor discussion. They are keeping me w/Lovinox injections until the surgery then for a week after as I go back into the Warfarin. God is so faithful and I am filled with hope that the OHSU doctors know what they are doing. I believe it is good care in Portland.

Wishing all of you the best, wondering if any of you might have experienced cyst type masses before? They are uncommon in shape and filled with fluid and not believing it is blood filled as they did at first then the second scans showed an irregular mass and not a typical cyst. This again, could be Endometriosis related.

Becca

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MaryF profile image
MaryFAdministrator

Hi, I am glad that the bridging is in place for your up and coming procedures, all the best, and get better soon. MaryF

beccafullcircle profile image
beccafullcircle in reply to MaryF

Thank you so much MaryF

Lure2 profile image
Lure2

Hi Becca, I am not happy to hear about your present health problems. So sorry that you have so much pain. I have heard thát cancer is very seldom connected with APS.

I am so glad that you believe in God and that you feel confident that he can help you. Take care Becca and tell us please how everything goes.

My very best wishes to you from your APS-friend Kerstin in Stockholm

beccafullcircle profile image
beccafullcircle in reply to Lure2

Always so good and encouraging to hear from you Kerstin.

Thank you for the ongoing support you naturally give.

It's been a journey once again, my faith and family sustain me, as it has not been easy

So much of what happens inside relate to Hughes is difficult by itself then to add the other struggles simply becomes overwhelming at times

I constantly take a blessing inventory to remain thankful knowing that so many others have real hard core struggles, there is a great perspective to learn from a mission outlook, third world perspective always keeps me grounded. I am joyful and have peace to have quality care and a family and home to come to.

The oncologist and hematologist seem to be very caring and knowledgeable. There is confidence and attention to detail with them. I am sure I will bounce back promptly and have even some of the pain removed related to the gyno area. Thank you again, hope you are well, I will let you know the following week what comes of the surgery findings.

Becca

jetjetjet profile image
jetjetjet

So glad to hear that you are in good spirits going into something like this -- it is so important and will help . Mt thoughts and prayers are with you my friend .. stay strong and most of all positive .I will be watching your posts and reply's . Casey sends a wag and me a big wish of luck and a speedy recovery---------------------------- C & J

beccafullcircle profile image
beccafullcircle

What a wonderful response, thank you so much for sharing. It sounds almost identical to what is happening right now with my health. I had the hysterectomy already in February and only had one ovary left until this upcoming surgery due to an ectopic that burst back in my twenties (a long long time ago :)

I am sure that I will feel significantly better once the surgery is completed. The pain has not been welcomed, as it has effected a few areas with it landing on my bowel. I believe the cancer precautions are simply that...precautions. I am healthy both in mind and in body even with the Hughes and health struggles with the PE and DVT.

Thank you for sharing, it really helped my heart.

I'm looking forward to a good report and the ability to run again :)

Becca

jetjetjet profile image
jetjetjet

You are sounding as good as you can my friend--Did you say when the date and time of your procedure is . ??? you may of and i just spaced it { brain cramps } :-) :-) :-) Casey and i will be thinking of you .... Let me know please ---- be good C & J

DannyBoy1 profile image
DannyBoy1

I'm praying for you Becca and am glad you have gotten good diagnosis there. My appointment at OHSU is in three weeks.

beccafullcircle profile image
beccafullcircle in reply to DannyBoy1

So good to hear from you, thank you so much. I will keep you posted as well I would like to hear from you and see what your visit shows. It would be good to even let Dr Delourghy know that you have friend on here that he treats also.

Surgery is this week for me.

I'm praying for your trip and visit also

Becca

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