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Last week my husband had his blood tests and ct scan. He didn't have the intravenus injection for the ct scan as he didn't get any warning beforehand. However they were still able to go ahead with the scan anyway.
Today we got the call to say they have they results and it was of high importance that we come to the hospital tomorrow morning for a chat with his consultant. We were already warned it would have spread so tomorrow we find out where and treatment.
Even though we both know its curable, its still hard. Hearing the nurse ask how long have had it for and using the word, it hits you like a train and makes you feel like your hearing for the first time again.
Tomorrow you will get some news, and then you will be given a plan. We are all different, but I always feel better when I know what I’m up against, and that there is a plan. And tomorrow you will have a plan of attack. Might be an op then chemo, might be chemo then an op.
Have you got any questions you want answering? Write them down, you may forget at the time.
And remember this is the most treatable form of cancer, if it has spread, wherever it has spread to, it is still testicular cancer, and it responds extremely well to treatment. Alll of that said we all also know the mental anguish of dealing with the diagnosis and hearing the word said out loud.
Ill be thinking of you
The start of this journey is the hardest because there is so much waiting/ unknowns and fear for the future. However, as Dan says, tomorrow will be knowledge of what you are both facing and the plan to deal with it.
When we went to my husband’s hospital appointments I brought my notebook and a list of questions as I wanted to have at least a little control over what was happening at every stage, at least until I trusted the consultant. I got these from a TC website https://www.testicularcancerawarenessfoundation.org/questions
I pass it on in case of use but equally you might prefer to be led by the medical team.
Finally, know that you and your husband are in my thoughts ( and prayers if at all welcome but no offence taken if not).
Remember this is highly treatable and highly curable at all stages.
Thanks for replying. Well we got the results today. My husband didn't come he stayed at home. It has spread to the lymph glands and the bones. Surgery has been cancelled. Chemo starts on Thursday and he has to stay in for a few days while getting it then home then back in. Seeing a different doctor now as his previous doctor only deals with tc.
So not what we were expecting. I had questions to ask but he wasn't able to answer.
Surgery has been cancelled now. It has spread to the lymph glands and bones. Seeing a different doctor on Thursday then chemo starts the same day
They said due to it being in the bones that superexceeds the TC. Not what we were expecting. I didn't realise it could spread to the bones
You now have the startings of a plan. TC spreading to the lymph nodes is common, the bones less so.
The below link is to a medical case study where TC had spread to a patients bones, documenting follow up 20 months after chemo, 4 rounds of BEP, where he had no evidence of disease, following a complete response to treatment. Evidence of the effectiveness of treatment
It sounds like your husband, and just as much so you, need to seek some support from the services Macmillan offer. I need my wife, but she needs me, for us to get through this, together.
Thinking of you both
First of all, you are amazingly brave to go in and get the news on behalf of your husband. Your strength thus far will be sustaining him and giving him such support. It is important to make sure you are also supported by way of a designated key worker nurse/ as Dan has mentioned, a Macmillan nurse. It is also important that you have someone/ lots of people you can lean on so if any friends or family members fit that bill, make sure you ask them for support. This is not a journey you need to do alone for both of you. It is a time to ask for all the help/ support you can get, regardless of how independent you may usually be.
Secondly, I am glad that Dan has stepped in with the research as he is excellent with that. Do remember it is bone mets from the TC so still TC the medical team are dealing with and still treatable/ curable hence the plan to treat on Thursday.
You are doing amazingly. Today was a tough day. Tomorrow will be better. Take care.
Thank you to both you and Dan for the help and support. His doctor who deals with TC said he was passing us over to another doctor as he couldn't help us now and it had went beyond the TC.
When I asked if it was treatable the doctor and nurse both said we don't know and that I would need to speak to the other doctor and that hopefully the chemo will help / work.
They actually wanted him in today. If he had went to the appointment they would have started the chemo right there.
Sorry Evie, I thought it was bone mets from the TC hence still TC. From my research even when it spreads to bones it is still TC but I am not a Doctor and they are the experts so will defer to them on that.
So you will see another oncologist on Thursday who is an expert in this?Did they mention the name of the chemo?
Yes we will see another oncologist. It's very confusing. It is bone mets from the TC. However they are focusing more on the bone mets and not as much on the TC, is the impression that I got from them. Thats why they cancelled the surgery. Said the results showed it was in his bones and that superexceeds the TC.
How are finding dealing with this, if you don't mind me asking?
Thank you for the link, very helpful. Again thank you for the support. It's a very scary and overwhelming time. I'm glad you have your wife to help and support you.
When I was first diagnosed I must have read every thread in the TC section of the forum, and it is not uncommon for the op to be delayed if the TC has spread and they can see large mets. The chemo is used to get the TC under control, and then the op can take place. It’s about priorities.
I think at this point I would like to have it clear in my head, what is the plan and treatment schedule So that I could get my game face on. For example, on my relapse I knew my treatment started in October and that it would be over once the series of Strictly Come Dancing had finished. I’m not particularly keen on chemo or the program but it was something to focus on!
Next meeting get a detailed plan of the treatment, and focus on getting though that as that is the part you and your husband play in this, the doctors will do the rest. If ever there was a time to be selfish it’s now, ask awkward questions, insist on answers, if it’s not clear to you get them to repeat it - a phrase I use at work is “it’s all about me”, and in this instance it is all about you and your husband, nothing and no one else is more important right now.
You are doing incredible to be attending these meetings on your own, could s friend or family member attend with you - they will be calmer and might just remember to ask that question you forgot to ask.
Ok that makes sense. Great there is someone specialised in that.
Re how I am dealing with it, don’t mind sharing at all.
During the diagnosis and surgery ( December 2018) and chemo ( Feb- April 19) I went into practical mode. I researched a lot ( Cancer research website and this one the main two as some of the American ones a bit overwhelming). I also was very open about it and accepted offers of help with the kids/ meals etc. I am usually very independent but that changed as I needed support.
But mainly, I relied heavily on my faith. I have a strong Christian faith (my husband is an atheist so he had different ways of coping). When I talked to God he gave me a strength and peace I never believed possible. I am a very emotional person and bit of a worrier but I felt protected in the main.
Now that the chemo is over and my husband’s first post scan apt went well ( the nodule shrunk and he is now on two monthly checks) I have weirdly felt less strong. The “ hard part” is over and yet I can’t quite believe that.
I have signed up for counselling with Macmillan so hoping to work through that.
I guess this is all a journey and there will be good days and not so good days.
If at all possible, try to find one thing each day that makes you smile/ gives you joy and soak that up. Keep busy and do one day at a time. Then your mind can’t go to those dark places.
Exercise has also helped me enormously. I joke that it’s the three Gs that have gotten me through; God, the gym and gin!!
Anyway, keep staying strong. Today there will be joy!
No need to respond but know you are in my thoughts tomorrow.
Sorry just back from the hospital. Today was intense. My husband met with his new doctor today. He didn't want to ask any questions just said right start the chemo. While he was away I asked the doctor questions that my husband didn't want to know.
It has spread to lymph nodes, pelvis, spine and lungs. He is getting 17 hours of chemo per day for the next 5 days then home for 3 weeks then back in for the same cycle. Think they are doing 5 cycles of this. So pretty intensive. Tonight they started him on the morphine every hour
Doctors have said they need to keep him thinking postive. My husband knows its in his bones but doesn't want to know where.
From what I am reading online if its in the bones its not curable? However my husband doesn't know this if he did he would stop the treatment now. I told him about the article that Dan had sent me a link to and my husband is feeling so postive right now. He has his game face on and is ready to fight
He was sitting making jokes wirh the other patients today and asking them how their cuddle buddies were doing (trolley for the drips)
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