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Lupus & Cancer

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julian1302
julian1302

Dear All,

  My mother has been suffering from SLE for the past two years and just recently has been diagnosed with stage 4 cancer. They can't locate the primary therefore are going to start chemo treatment anyway and am wondering if anyone has experienced or know of any patients that have encountered the similar prognosis? I have read that lupus patients have a tendency of developing cancer more than the general public. It all started with the enlargement of her lymphnodes at her liver and kidneys and metasis has already taken place however the lymphnlodes are not the primary as the cancer would have started from a gland. Any info would be much appreciated. Thanks!

0 likes, 14 replies

14 Replies

  • susan33651
    susan33651 julian1302

    Posted

    Hi,

    Sorry to hear of your mother's predicament. Here's hoping that the chemo does some good. Have the docs said whether it is for treatment or for palliative purposes? Have you got access to Macmillan nurses or anyone who can help you and your mum through this difficult time? Speak to your mum's doc or GP to ensure that you have all the information you need and all the support services available to you.

    As regards SLE and cancer, from what I've read of auto-immune diseases it would seem that Polymyositis is known to give the person a significantly higher risk of developing Lymphoma, I don't recall reading anything about increased risk in SLE. As a nurse I see many people with a wide variety of medical conditions who also have cancer, but it doesn't always follow that they are linked, it is more often than not just extreme bad luck. It would seem that your mum is truly unfortunate.

    I wish you both well.

    • julian1302
      julian1302 susan33651

      Posted

      Thank you for your comment and kind words Susan. It is for treatment and not palliative care.  She was diagnosed with mild musculoskeletal lupus about two years ago when she presented with intermittent joint pains and stiffness esp involving the PIP joints . Her ANTIDSDNA was elevated at 41iu/ml though C3/C4 was normal . There is no renal or other major organ involvement . She has been on long term hydroxychloroquine 200mg bd with intermittent steroids during periods of flares . She generally responds well to steroids . She is currently on plaquenil 200 mg bd abs prednisolone 10mg daily. On Jan 11th of this year she was confirmed to have cancer and during the PET scan around a week later the staging confirmed it was at Stage 4 but sadly the primary has yet to be ascertain. 
    • susan33651
      susan33651 julian1302

      Posted

      Hi, Julian,

      I have nursed a great number of patients with an unknown primary, it is not an uncommon situation, many do go on to make a good recovery following a combination of radiotherapy, chemo and/or surgery. It always strikes me as being something of lottery where the Human body is concerned. I have seen people in their 60s who are so ill with a multitude of problems, not necessarily cancer, and they look and feel old before their time and often pass away without much of a fight. And then there are those with devastating diagnoses of cancer at the terminal stages who despite their age (some in the 90s and 100s!) fight with every fibre of their being and live for a good number of years. I am constantly amazed at the differences! 

      Stay strong and keep positive as there is always hope.

    • julian1302
      julian1302 susan33651

      Posted

      Thank you Susan that's true. She's a fighter so we have that going for us. Lymphoma has been ruled out as well as any anamolies to the brain. It's definitely an adenocarcinoma . Metasis has started to rear its ugly head at the lung areas as well as the liver. She starts her chemo tomorrow via a chemo port. 48 hours every 2 weeks. My uncle is a professor at Case Western in Cleveland and he has his oncologist friends at the cancer centre helping out by looking through the reports I send to him daily from Malaysia where my mum and I are based. So far they've agreed as well that chemo should start asap to tackle the cancer. She did a second biopsy today and we are sending the sample to Belgium where a test is said to definitely zoom in on the primary although it is still in clinical trials.
    • susan33651
      susan33651 julian1302

      Posted

      In my experience as a nurse of some 30+ years, adenocarcinoma is most commonly found as a primary cancer in the bowel. My aunt had this type of cancer, but it spread and despite every conventional and non-conventional treatment they tried it eventually proved to be too aggressive. This was almost 15 yeas ago and there have been many advances in this field of medicine since. It seems as though your mum's cancer has been found at a point when treatments will be effective. It is good that you have family in the medical profession and connections which will prove invaluable, make the most of them! If you need any help in translating the medical jargon leave me a message and I will gladly help.

      Best wishes.

    • julian1302
      julian1302 susan33651

      Posted

      Thank you Susan. You are spot on as our oncologist suspects the same as well and the chemo that he will administer will target the bowel area .. I will definitely pass it along to you when it gets too Greek for me to comprehend. :-) Thanks again.
  • susan33651
    susan33651 julian1302

    Posted

    Hi, 

    I just had a look at the info on SLE on this site and couldn't find anything on SLE and cancer specifically, but the Johns Hopkins Lupus center website does. You are correct about SLE and cancers. The JH site does mentinon an increased risk of Lymphoma in the early stages of SLE. It states that the risk of certain female cancers is greater in women with SLE. It also mentions that research has yet to ascertain the link and that immunosuppressant treatments may not have a role in the development of these cancers. Have a look at these two websites and any UK based dedicated SLE or autoimmune websites as they may have more information.

    Best wishes.

  • pam_87693
    pam_87693 julian1302

    Posted

    I'm so very sorry the cancer could be anywhere as Lupus can be in every organ in the body including the blood and Lymphatic systems. There is a lymphatic system in the brain, it used to be called water on the brain but it's not its recently now realised to be lymph. I can only suggest the oncologist does a contrast MRI and then starts by washing out the Lympoma which can be done without surgery. I'm so very sorry for you both and wish your mother soon gets help. 
    • susan33651
      susan33651 pam_87693

      Posted

      The Lymphatic system is a body wide system which incorporates the brain. Water on the brain is the old name for Hydronephrosis, this is a specific condition which causes a build up of fluid due to a blockage or malformation in the ventricles of the brain. It is found in newborns and can occur in certain types of brain injury. It is treated by inserting a shunt to allow the fluid to drain, thereby relieving the pressure and hopefully preventing irreversiible brain damage.
    • julian1302
      julian1302 pam_87693

      Posted

      Hi Pam thanks a bunch for your comment and kind words. We have ruled out Lymphoma as well as any anomalies to the brain. It's definitely an adenocarcinoma. The chemo medication that she will be administered will be zooming in on the abdominal areas ; stomach, intestines etc. She has a history of chronic thyroid so they did do a biopsy there last night to rule that out as the chemo will not affect the thyroid if the cancer did originate from that gland
    • susan33651
      susan33651

      Posted

      Hydrocephalous, sorry not hydronephrosis (foggy brain today, TN playing up).
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