Stage 1C2 - Had debulking hysterectomy and don't want chemo

Oh Annie, you have been through so much!! 

You are still grieving your mum. That's a new bereavement and a huge knock also, because when we suddenly lose someone we have been caring for, it rips the whole being out of us.

You cannot deal with any more right now. I haven't had chemo, but from what I gather, there are always some kind of side effects even if some people get away with very few and very minor ones. But the treatment, and possible side effects, are stressful in itself and that's if your life is set up to take this hammering to your body. I think you are quite right to view this as something that right now in your life, you really can't afford to undertake.

The key thing here is that firstly, it is your body, not anybody else's, and furthermore nobody else can really appreciate what else you have going on in your life as well as your cancer. Meaning, the surgeons and consultants are there to preserve life, to make somebody as fit and well as they can, and to cure them if possible. And they rightly strive to meet these aims. I got the impression myself that my kidney surgeon was brushing off the importance to me of getting my insurance claim on my flooded kitchen completed, my leaking roof fixed, and my boiler thermostat fixed, plus the need to find suitable dog care, before I could take the plunge and go for the surgery. To him, these were issues that were not as important as my health. To me, I live alone, am on a limited budget too, and have no support to oversee the above if I am away from home or laid low for a few weeks after surgery. It was a big deal for me to get my home in as safe a state as possible before my several weeks of surgery/recovery, but others who have a partner to see to these things if they cannot, don't really understand in quite the same way. 

The other thing you bring up is that chemo may damage healthy cells as well as kill the bad ones. I have a feeling there are new chemos coming out, or new treatments, that target more precisely and cause less or no damage to surrounding cells, but I don't recall if I heard that these are already available, are available on trials, or available for certain cancers only. However, it might be worth talking through this with your team when you have that meeting on Thursday, because there might just be something that is available that will not cause damage to the healthy cells. It's a glimmer of hope, that is worth asking about. 

Failing that, my gut feeling is that you should go with your own gut feeling. You know your body best; you are in charge of your own life and you know what you can cope with and what you cannot. One thing to ask is what would happen if you delayed chemo by, say, six months, a year, or whatever. As you say, this chemo might be suggested to you in order to prevent cancer cells spreading or forming. They may not be doing so at the moment. Things to find out are whether they can give you a percentage estimate of possible future recurrence or spread based on their experience with other patients with a similar diagnosis (which may not be possible but it is still worth asking just in case they can give you some indication) and what the timeline might be for recurrence or spread. Everyone is different so they wouldn't be able to give anything other than an indication based on a general overview of past patients, but it might be enough to give you a rough idea of the level of risk.

Ultimately, it is your right to make the choice over what treatment to take. As long as you are armed with as much info as you can get, from your team, you then have the tools with which to make your informed choice. If you did delay, who knows if your situation might change a few months down the line or else even a new trial or treatment come out in that time...and going into any treatment, whether surgery or chemo, with a positive attitude is always going to give you the very best outcome. And right now, you have so much going on in your life that it seems your positive attitude has taken a knock too many. 

Maite, it sounds like you have been through quite a bit yourself. Why does everything challenging happen at the same time?

Thank you for the sympathy and understanding. You really get where I am coming from, because you are on your own like me. Getting the practical things sorted out is just as important when you are on your own.

I really appreciate you taking the time and trouble to write such a detailed and thoughtful response. 

There is some good advice in there about what to ask and it also reminds me that it is a decision based on all of my circumstances and ultimately mine.

I really needed to hear that it was alright to have doubts about having this treatment at this particular time. Having just lost my mother, I am not in a positive place right now. 

I will ask a lot of questions on Thursday and get as much information as I can before making a final decision.

How did your surgery go, Maite? Are you recovering well?

Thank you! I'm glad if that helped you a little to see this subjectively, rather than just objectively.

It's so important for us to remember that we are individuals, that we cannot always control what happens in our life and therefore when something that we can control arrives, we should seize the chance to do so. Cancer is one thing that so many people express their lack of control over - we can't help it if we get it, but what we then do about it is to a great extent within our control. 

I read a post somewhere on here yesterday with a lovely quote; I don't remember where the post was but I added the quote to my short list of inspirational quotes in the back of my diary. The quote she posted was from Eleanor Roosevelt:

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'"

I think that's a lovely inspiration, and it seems appropriate to share it with you also at this moment (you may have seen it already, if you go post-surfing on these forums like I often do!).

You may already have unconsciously been following this kind of inspirational concept, as you have got this far against all the odds.

I have had two cancers in two years - the first one was the hardest despite it being the easiest surgery, as I went straight from 62 years of near-perfect health, to suddenly having a major cancer! By the time it got to the second one, I had resigned myself in a positive way to no longer being able to technically call myself "healthy" but I am fairly fit, very healthy in every other way, and this seems to have stood me in good stead for recovery from each surgery. I get through the surgery and recovery, and get on with my life, because the person who goes into the hospital and has the diagnosis, as far as I am concerned, is not the same person as the one who lived completely healthily for 62 years. I guess it's a kind of way of not allowing the condition I have, to define who I am. 

Losing your mum is one of the hardest things in life, I believe. I wasn't even close to my mum but it knocked me back way more than losing my dad did, even though I was closer to him. There's something very, very special about a mother. 

So be gentle on yourself and allow yourself time to grieve. This is still very early days for you. I hope that you will be able to piece together the information you can glean, in order to make the right decision for you. I will be thinking of you because this is a big decision you have to make, and you cannot rush it one way or the other. 

I love that quote by Eleanor Roosevelt and have made a note of it. It's very inspiring.

I am 62 now. What a strange coincidence. I had an appendectomy back in 1995, but have had few health problems ever since until now.

I think that you're very brave, Maite and rather inspiring yourself, if you don't mind me saying so. That must have been very hard, facing a second cancer, just when you thought things were getting better.

Yes, it's hard having lost my mother, but I think God is giving me space to grieve by making me slow down at this time.

I went to the hospital yesterday and met the doctor and team. I was adamant, at first, that I was not going to have chemotherapy. Then the consultant came in and offered a compromise of 4 cycles of Carboplatin only and stressed that I could always stop, if I couldn't tolerate it. He also told me that I wouldn't lose my hair, although there might be some thinning.

What really changed my mind were two things. One was that he said that it would improve my chances from 80/85% to 90%. The second was that he asked me how I would feel if the cancer came back and I hadn't done what I could in terms of treatment for it.

However, I have just had one of the blood tests back that they did yesterday and my Alanine Transaminase and Alkaline Phosphatase levels are high and out of range, indicating possible liver disfunction, so I have to go for another blood test next week, specifically for liver function. 

Chemotherapy affects the liver, so I don't want to make it any worse. My final decision will very much depend on this.

I am still anxious about the chemotherapy, but willing to try it, if possible, and at least give it a go. I am hoping that I will be one of the lucky ones who tolerates it quite well.

Thank you for your kind words and good advice, Maite.

Well that sounds a good compromise and that would be amazing if you can take treatment that won't cause you to lose your hair. I'm so glad you got to have a really good talk with your team and I was wondering if there might be some kind of compromise that would make the treatment easier on you. Ultimately, you have full  knowledge now of the options and any possible pitfalls, which puts you in control with this knowledge, and that's important.

I actually knew I was staring down the barrel of a second gun when I had my hysterectomy. When they were scanning for that, they found a small cyst on my kidney incidentally, and I didn't realise until the report came through that it wasn't just a cyst but a Bosniak IV, which is about 85% chance of being cancerous. However, it was so small and my gynae surgeon didn't want to send me for kidney surgery straight on top of my hysterectomy! so we agreed that he would put me on Active Surveillance - so I was sent off to Urology and had a scan approx every six months. It ended up being about half a centimetre bigger than the scan had shown, when it finally came out, but on the scans it hadn't grown at all in two years. It just meant that I could effectively choose whether, and when, to have the partial nephrectomy. I could probably have left it another year...even another 5 years...but the Urology consultant reminded me that it appeared to be a high chance of malignancy, despite being very slow growing, and that the bigger it got, over several years, the more of my kidney I would have to lose. It was in a very easy place to remove just the cyst/lesion with a small margin and he was confident I would lose very little kidney function. I was more worried about that, as I have a high level for my age - over 90 which is about the level of a 50-year-old. and was very proud of that! Remarkably, despite dropping down to 75 immediately after surgery, I am now back up to over 90 on the latest blood test! - so, the thing I had feared most (losing some kidney function, and especially if it turned out to be benign after all), didn't happen!

I figured with my run of 'luck' (endometrial cancer) the chances of this lesion being in the 10-15% non-cancerous, were slim...plus I was starting from a very high level of kidney function so could afford to lose a little if necessary. I feel very, very lucky to have had two cancers that were contained, small, early stage, had not spread, and have been as fully removed as is possible to humanly assess. 

There are so many people on here who are going through far more than I could ever imagine myself enduring, and they are cheerful, they are positive and they are living their best life despite in many cases knowing that the span may be limited, so I don't think I'm brave by comparison, as I have had two such easy experiences as regards surgery and treatment!