High grade serous Fallopian tube cancer that travelled to inferior vena cava lyphm nods

Hi there

I am new to this, but was diagnosed July 2016 with Fallopian tube cancer. Went through hysterectomy after 3 rounds of carbo-Taxol then 3 more rounds. Now my cancer has gone to my lyphmnods in my back near vena cava. Has anyone else had this occur?> They are giving me Paxil-Calyx now and then I meet with surgeon and they may try to remove those tumours in my back. But I am nervous as its high risk surgery and worry about cancer spreading. I also have option of High powered cyber knife radiation to try to ablate the tumours. but again its a trial and risky of hitting nerves ect. Im very nervous as in beginning they told me I was a stage one and very lucky. I kept telling drs. I have terrible pain in my back and right leg...they told me it was regional pain syndrome,...even neurologists told me this......I knew my lymph nods were enlarged way back in 2015 but nobody did anything....told me they can do that when your celiac ect......leg/back got much worse and only became a bit better during chemo....pet showed they shrunk...but after chemo they enlarged and came back....so all along it was cancer....but nobody believed me...so frustrating as this could have all been dealt with long ago.....I have to decide surgery or high powered radiation......and possible more of this killer chemo that im not doing so well on.....I do not like when I hear onc. talk palliative or salvage with me....I told them I don't want to talk on those terms, it makes me feel dead already. I want a cure, I want these nods out of me now. They screwed up. They were not planning any follow-up other then every two months to do check up...they don't believe in tumour markers as reliable or doing runtime CT unless patient has new pain. I demanded all tests, Ultrasound, CT, MRI and CA125 everything showed clear except markers were rising steadily....so I asked for PET....the pet found the 5 tumours......so PET is the best way for detection as all else failed for me......if I was complacent I would have took drs, word for it, continued on in life, thinking I had regional pain syndrome like they kept telling me and my tumour markers were only high due to celiac and my auto immune disease....thank god im stubborn and persistent or this cancer could be all over. I still have a long road and not sure of outcome, but im still fighting hard and have big decisions to make. Im 53 never smoked or drank and im a hiker , outdoor girl, 2 grown boys and a great hubby that has been there for me constantly. Has anyone else had fallopian or ovarian cancer go to regional lymph nods near inferior vena cava?. Thank you for listening to my story. :)

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  • Hi there, onelifetolive, I wrote a lovely response on my phone, which then failed to load (again & again) and I lost it! Grrrr, don't you hate it when that happens, so I've picked up my laptop instead.

    I'm also HGS with Fallopian Tube Cancer, stage four, and a similar age (52) and was also pretty active in the gym before my diagnosis. I just wanted to say well done for persisting with your Doctors, but I can see how frustrated you are that they didn't listen to you sooner. I have heard before that PET scans can pick up tumours missed elsewhere as had a friend with breast cancer, who had a similar situation.

    I'm afraid I can't offer advice on your particular concern I just wanted to say I hope whatever treatment route you decide on, is successful and to not lose hope. Doctors do not know everything, as shown by their failure to explore your condition earlier!

    I wish you well

    Sarah xxx

  • Hello. Sorry to hear all this but you are obviously a fighter. When will doctors learn they must listen to us?

  • You are amazing! You have trusted yourself to get the answers you needed. Get all the medical opinions and advice you can then trust yourself again to choose the right path for treatment. I haven't had experience with what you describe but I am betting on you to get through it. You will! You got this!!

    All my best,

    Anne

  • Dear Onelifetolive, I'm so sorry you are dealing with this difficult situation. I am also high grade fallopian cancer, grade four. I had metastasis to my para aortic lymph node when first diagnosed, which I believe swelled out to the vena cava junction. A vascular surgeon specialist showed me my imaging and outlined the node for me. When my gyn onc did my debulking, this vascular surgeon removed my para aortic lymph node. Not a lot of doctors will do this, because it is very high risk. I was only the fifth case he had done. I was terrified to do this, but in my case it was successful. He explained that cancer sticks to blood vessels and they have to be peeled off. I was not given the option of radiation. I am not saying you should choose surgery, but just telling you my experience. Best of luck to you. Mary

  • best of luck to you.I'm sure your due for some good news.

    I've got two girls 15 and 20 with a week old very cute first grandson. but I've had about 6 emergency pops for one thing or another so I'm not too surprised really.

    It will actually be good just to get some kind of information .

    best of luck again.

    van

  • I've had a lot of GPS tell me I'm fine then ended up in emergency surgery hours later. .my grumpy stubborn Ness has saved my life a few times. you know your body and when things are not right.stick to your guns .good luck I hope you meet a great doc to help you.

  • I have stage 4 ppc with para cardiac node involvement. I wasn't offered surgery for this as was considered too risky. I'm 63 so maybe my age went against me for radical surgery

    Wishing you all the best

    Judy xx

  • I have too, have stage 4 metastatic fallopian tube carcinoma and my story mimics yours... a LOT! No one listened to me either because in 2014 I was 42 and didn't have 'this cancer' (breast and colon cancers run in my family and so does the gene for it..CHEK2 which I have) so by the time it was found it was grapefruit sized..3 years later and it's in my lymph node between the aorta and vena cava.. although it has shrunk with the Avastin (immunotherapy) and 18 rounds of various chemos helped keep it from spreading, I am told it's incurable and inoperable. I have a CT this coming Wednesday afternoon so we'll see if my 6 week break from any treatment at all, has kept it at bay or if it has grown..I also have stage 2 Non Hodgkins Lymphoma and a lung nodule that seems to be stable at the moment..can't treat the NHL while being treated for metastatic high grade serous fallopian tube carcinoma.. I too, was told it was stage 1...always had back pain..my firstling treatment ended March of 2015 but I never felt better and CA 125 kept climbing but because it was still 'low' compared to the number prior to surgery, no one took me seriously. May of 2016, I was diagnosed at stage 4. I am 45 and have 2 children (ages 18-son, and daughter age 22)..I am married but it's a miracle we're still together. Keep talking to your doctor..find one that will listen. It's imperative to have a general physician on board.

    blessings,

    Lynne

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