I wrote here in June about having a recurrence after being 6 years in remission.
My CA-125 was close to 6000 and I had extensive disease to the peritoneum.
I am also BRAC2 positive. I have done 5 sessions of platinum-based chemo and my CA-125 went from close to 6000 to 60 (result after the 4th session).
They had me redo my CT scan for my chest/lung in mid July because the first scan did not catch everything and they didn't see anything.
I was supposed to do a follow-up CT scan in the middle of my cycle (after the 3rd chemo) but since my province has a backlog, the CT scan was done one week after my 5th chemo session. It said something like: No residual ascites. The previously noted extensive peritoneal metastatic disease has essentially resolved with only a few regions of mild peritoneal thickening in the pelvis. There is a single residual nodule visible in the right mid abdomen anteriorly on series 601 image 144 with maximum diameter of 1cm; previously 8 cm. No other residual measurable disease. Everything else was completely normal.
But I was shocked when I read the chest/lung one since it had this information: New sclerotic foci at T4 and T9 vertebral bodies are of uncertain clinical significance. Metastatic disease cannot be excluded. Correlation with nuclear bone scan recommended.
I admit that I am so freaked out that I cannot think straight. I called the oncology nurse and asked her if I have another scan scheduled and she said that she would ask my oncologist. She called back and said that my Doctor would be discussing the results of my CT scans next Tuesday.
I feel so alone. My husband is angry at me all the time because he says that I am torturing myself by asking opinions from online doctors on JustAnswer.com. I have never felt so lonely in my life.
Some doctors say that it is highly unlikely and that the radiologist is just being cautious as to not get sued. Another said that it cannot be ruled out. I was always told that this disease very rarely goes to the bones but now am finding more evidence that it does go to the spine (studies online). This wasn't there when they did the CT scan in mid-July and my CA-125 dropped really quickly.
I have had to take shots to raise my neutrophils for my chemo sessions 4 and 5. I did have a bit of bone pain because of this but it was minor. Apart from that, my back does not hurt. I can eat, go to the bathroom, no nausea or pain of any kind.
I am quite thin and very anxious and depressed. It doesn't help that my husband seems angry at me all the time.
And if it is bone mets, can it be treated.
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Chanterelle
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Hi Chanterelle, you sound so anxious and alone. I just wanted to reach out because those of us here do understand. I had a CT today, which was supposed to be my baseline for chemo line 3 but v late as I have already had 2 cycles and CT dept has long delays . Like you I am nervous about some results which could be lung mets or lung disease or nothing!
It’s really hard when you are so worried and no one gets it.
I have had to try to rein myself in. There are times when I tell myself there’s nothing I can do but wait to see how this turns out. There are times when I say ‘ok you have worried for an hour that’s enough, get on with something else.’
You may not be able to hurry up the information you need but you can focus on what you need right now.
Talk to your family… could they just listen to you without having to fix things?
Do you have friends with cancer that will get it and who can support you?
Is there a helpline like Macmillan you can ring just to get rid of the loops in your head?
None of us can predict the future but we can offer love and hugs when it all gets a bit much xx
Thank you. I called my sister and she came over. I had a good cry. My husband is in the bedroom ignoring me right now. He just doesn't understand me. Funny how you can be in the same house as someone but still feel so alone.
I suffer from severe depression, OCD and post-traumatic depression and I think I am undermedicated as well. It is so difficult to wait around to talk to a specialist.
I hope your results come back clear. Thank you for taking the time to respond to my post. Yes, most people don't get it.
I am in Canada and there isn't much as far as helplines.
Try not to worry...easier said than done for sure. Sounds like you are in good hands but I know the waiting is really ruff . No one's cancer is ever the same. Just believe that you can do well. It would be very unusual to spread like that and it is certainly treatable.. I have been dealing with this disease for over 17 years. I have put myself in so many bad places but am still here to tell the tale.I am also from Canada.
hi, I am terribly sorry for the issues you are dealing with. For the potential bone met, I suspect that it could be due to Neulasta or Neupogen you have been getting to deal with neutropenia. These drugs are designed to increase the production of bone marrow cells to combat the reduction of WBC. A bit of pain is expected due to their action. In addition, radiologist readings are often incorrect in my cases too, partly they don’t know the whole history of your cancer progression. With CA values dropping that much, it is unlikely you have new Met.
Re your husband, I would sit down and ask him what he wants you to do, and also tell him what you want him to do for you. You need to learn why each of you are behaving this way, let him know how you feel when he is angry at you. You are the one who needs emotional suppor more than him. I think he can use counseling of care givers not to mention one for yourself.
I did have the shots the week that I did the CT Scan. It was a week after my 5th chemo. I am doing the 6th one on Wednesday. I was diagnosed in 2015 with degerative disk disease or I think it is called osteoarthritis. I am thin and don't eat any dairy products at all. I have no pain in my back as well. My bones are creaking for some reason (my arms etc).
As for my husband, I am trying to stay calm because he's always been great with me but for this recurrence, he is very short with me and yells at me a lot which makes things so much worse.
Hi Chanterelle, I am one of the Admins on the Ovarian Cancer UK Facebook group. We tell people over and over again, don't Google, and don't use online resources unless they are reputable (Ovacome, Macmillan) because they CANNOT possibly be accurate and specific enough for you as an individual. Talk to your doctor, get an early phone appointment if possible, and ask what they think about YOUR situation. Waiting for results sucks! Well done for talking to your sister, and find a quiet moment to talk to your husband. He is probably just as scared as you are! Sending hugs!
Dear Chantelle I am so sorry you feel so alone and anxious. As others have said awaiting news is the worst thing. Radiologists are the most cautious people I think. I have a small fracture in my vertebrae and I am currently awaiting a further scan. My mind has been everywhere with this but I have found that this is just not helping me . So I reach out for support, just as you have done with your sister, and this has/is helping me through this bad patch. I say bad patch as this is how I see it.I think the advice about talking to your husband and finding what you both need and want from each other is excellent. Not as easy as it sounds but could be worthwhile if you give it a try.
The future is uncertain and scary but, we can support each other through. Sending you lots of love. Look after yourself and reach out to people. BB. x
Hi. I also have to deal with an angry husband. Men are delighted to help us when the problem is something they can fix. A problem they cannot fix/manage or control throws them back into fear/childhood traumas which makes them angry or withdrawn. Consider living elsewhere for a week or two to help him calm down and see what he is doing experientially. Your trying to ask or tell him will only make him worse. I have the same problem. After 2 yrs I have learnt to move out when the going gets rough. It is much better. I withdraw into myself and seek to face the illness calmly knowing that ultimately I am alone in this and expecting help more than occasionally is illogical. Everyone has to face their burdens alone. Learning to stare this disease in the face alone and accept it as a challenge that will ultimately benefit me, is all I can do. No friend, sister or husband can help me accept this. Only me. Acceptance helps us endure recovery or death and leave a good legacy.
Don't let ambiguous shadows on a CT destroy your happiness and kill you before you die. Banish them from your thoughts. You are doing well. The chance of them being mets is statistically slim. Love life and live it joyfully. Watch silly movies, do things you love and let time pass. Before you know it you will have lived another year.
Hi Lyndy I have done it. I was v scared initially. I thought God would smite me but my friends/family and my pastor were all very supportive. I stayed in a friend's vacant flat in a pretty area with my dog. Strolled on the beach every day. Listened to uplifting podcasts, read books on health and read fiction, found a massage therapist nearby etc. I found I was far more proactive about looking after me when I was alone. Determined to maintain that mindset when I go home. Husband was delighted to have an empty house initially, but a lot more communicative now. We speak on the phone. I visit home or he comes to me. It took a month, but now I can see what I was doing that upset him and he can see he was being unfair. I think gradually I will feel able to move home, but I need a bolt hole to escape to where I can cry and freak out honestly without having to worry about the effect it will have on anyone else. I seem to recover better from each round of bad news with less self pity when I am alone. I am pleasantly surprised to have discovered this. Very empowering.
Hi Lyndy I have done it. I was v scared initially. I thought God would smite me but my friends/family and my pastor were all very supportive. I stayed in a friend's vacant flat in a pretty area with my dog. Strolled on the beach every day. Listened to uplifting podcasts, read books on health and read fiction, found a massage therapist nearby etc. I found I was far more proactive about looking after me when I was alone. Determined to maintain that mindset when I go home. Husband was delighted to have an empty house initially, but a lot more communicative now. We speak on the phone. I visit home or he comes to me. It took a month, but now I can see what I was doing that upset him and he can see he was being unfair. I think gradually I will feel able to move home, but I need a bolt hole to escape to where I can cry and freak out honestly without having to worry about the effect it will have on anyone else. I seem to recover better from each round of bad news with less self pity when I am alone. I am pleasantly surprised to have discovered this. Very empowering.
Cancer sucks, as does having an overactive brain, anxiety, depression and a thoughtless husband. Radiologists are cautious, I’m sure that your scan results will be carefully looked at. I know it’s not much help but it is unlikely that your cancer has spread to your spine. Can you approach your GP about getting anti depressants or getting counselling? Is there a cancer support service near you that offers counselling and alternative therapies? Can you explain to your husband that you are not intentionally torturing yourself but are very anxious, depressed, worried about the future, feeling alone and would appreciate some moral support? I’m sure that both your husband and yourself want to get back to normal so you have a joint aim in that. Sending lots of love and support from the UK.
Dear Chanterelle, I hope you soon get good news that puts your mind at rest. I also think you need all the emotional support from professionals that you can possibly access and advise you to look into this and research as much as you can. I had a 35 year marriage to a man with whom I got on well, but who was emotionally abusive to me whenever I was ill. In those days, the term "emotionally abusive" had not been invented so I had no concept for it. Now it is recognised. In the end, he left me when I was going through my breast cancer treatment. Now, 20 years later, going through ovarian cancer, I do not have the double burden of emotional abuse on top of all the resilience that cancer requires. I know how difficult this was. So, however you choose to get through this journey, I wish you well from my heart. (No idea why the text has gone into italics but I can't correct it!) Emma x
Hi. You’ve gotten some excellent advice here, but I want to reinforce the need for more medication for your depression issues and anxiety as well as counseling. Does the hospital where your cancer is treated have a social worker. They should be able to help connect you with appropriate services. Like others I think the odds are that what showed up on your scan is not Mets. And I have a similar situation. I am ned but my last chest CT noted something new in my lung which is possibly metastasis. I’m getting rescanned in a couple of weeks. My oncologist didn’t think that’s what it was. Since my CA 125 isn’t a marker I have to wait for the scan. I wish you the best.
Wow great advice from women who have been battling this awful disease for YEARS! It is disturbing that your husband is not understanding and hugely supportive but I have heard that alot. You must draw from deep inside you further than you have delved before you and only you can gain the strength that is needed. And if you cannot get the support you need from the ones closest to you it may be time to do counseling and medication. Sometimes fear of the unknown or known cripples us and our loved ones. They want to help but anger sometimes is easier than overcoming fear. Try to live each day with the simple things. Sunshine, a flower blooming a childs laughter on the playground. Whatever takes your mind off of what is happening now.
See if you can have a PET scan scheduled that will show a more definitive representation of what is actually happening with your remaining cancer cells.
Myself have never been off chemo since Jan 2020. The cancer has continued to progress and we have switched to 5 different chemos.
I was in a wheelchair in June this year and they switched to a different chemo and now I am walking working out and riding my horses I again(not every day) but when I feel strong enough. I go in for chemo every two weeks and have neulasta every time for white blood cells. I am confident in my oncologist and she hears me out and is always willing to try something new or help out if I have new or troubling symptoms. Other than this website I depend on her my oncologist surgeon and another cancer hospital doctor City of Hope.
I do hope you can find some happiness in dealing with the fear and unknown but do try to give yourself a break and enjoy the life you have now!
Thank you for your post. I’m so sorry to hear how worried you have been feeling following your recent CT scan results. I wanted to let you know that the Ovacome support team are here for you if you would ever like to talk things through. You can message us here on the forum, email support@ovacome.org.uk or call our support line on (+44) 800 008 7054 / (+44) 7503 682 311. We can also speak via WhatsApp, Zoom or Skype if you prefer, which may be more convenient as you are based overseas: ovacome.org.uk/forms/1-to-1... . You can learn more about Ovacome support services here on our website: ovacome.org.uk/Pages/Catego... . We’re here Monday – Friday, 10am – 5pm (U.K time) to help with questions, provide information resources or just have a friendly chat.
I can see that many members of the My Ovacome community have shared their experiences with you which I hope you have helped you feel less alone at this difficult time. In addition, I thought that Ovarian Cancer Canada’s resources on creating connections may be of interest to you and can be found here on their website: ovariancanada.org/creating-... .
I hope that after your clinical team have discussed your results tomorrow, you will receive some personalised clarity and reassurance. Please don’t hesitate to let us know if there’s anything we can support with in the meantime.
It's a shame that you cannot get support from your husband. We all need someone in our corner at times, even if it's a stranger on a forum like this. Of course you're going to look online. I see that Ovacome has advised against this and can only speak for myself. Forewarned is forearmed. This site has helped me. I've also called Macmillan whose helpline is very good but you don't have that option. My sister has been my rock. Can yours come to appointments with you? She can ask the questions you don't want to. As has been mentioned many times here, you sometimes have to be your own advocate.
I'm not surprised you're anxious. You would be even if you hadn't looked anything up. Perhaps try to explain that to your husband. It's natural once you've had OC, esp if you've had a recurrence. That's the mindset.
Try to stay strong. Ask for help. Perhaps someone will speak to you before Tuesday ... Wishing you all the luck!
Thank you for all of your replies. My husband is now being very supportive and we had a good talk.
I was so nervous this morning and I went to get my blood test. He was incredibly supportive. My CA-125 is now down to 34 which is the normal range in my country. I still have one more chemo session tomorrow.
I went to see my oncologist a bit later that morning and I left confused and scared. I don't think she had even looked at my CT report. She hadn't noticed the comment about the two small sclerotic focis on my spine of unknown origin that was reported on the CT report for the chest/lung part of the report (they reported it separately). She told me that she would go look at it and then the nurse came back to give me information about PARPS. I asked if the doctor was coming back but she said no but that she had ordered a bone scan. I asked the nurse how long it was going to take and she said that it was not a priority so could take a couple of months. I was handed a hand out about PARP inhibitors and told that they would with me again in 4 weeks.
I called and asked for a referral for a psychiatrist because I am undermedicated right now and severely depressed. The nurse didn't really know if they had one but was going to send a message to the care team to see what they recommend. I am presently on Clonazepam but it's been over 6 years and I need an anti-depressant. I was prescribed one over 6 years ago but it is not working anymore.
I really wanted my doctor to explain to me what she thought about the sclerotic focis but she didn't want to go there for some reason. She said it is unusual to go to the bone normally. She said some pretty scary things as well that I don't have the heart to write down.
I would gladly pay money to get more personal and less cold health care. There was another oncologist working with her this morning which the nurse thought that I was seeing. He is very nice and I should not have insisted on seeing my regular oncologist. I think perhaps he was assigned to me because he had read the reports and she didn't have the time (I had to wait to see her). I just don't know.
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