Newly diagnosed (awaiting location of primary)

[mel17]

I am newly diagnosed (two days ago), after being referred to various doctors/specialists by my GP one week ago - I have a number of small liver lesions and possibly some affecting the spine, however they have yet to find a primary. I have had bloods taken and undergone numerous tests (liver biopsy, abdominal ultrasound, CTs for the brain and chest (negative)), and have ultrasounds booked for chest/breast and pelvis. 

Though still waiting on more tests, the oncologist strongly suspects it could be originating from the breast - somewhere deep that is challenging to see. I do find it frustrating that these CTs/ultrasounds are being done section by section (e.g. abdominal, then breast, then pelvis); my thinking would be that if you can't find the primary immediately, don't waste time by scanning for it bit-by-bit - do whole-body scans/ultrasounds, etc. Does anybody have advice on why this might be?

At this stage, without knowing the full picture, my partner and I are also finding it very challenging to remain positive and not be scared by what's on the internet. I am 30 years old and this has come out of nowhere, so he and I are struggling to know where to start with regards to support - especially relating to family planning. Obviously without more information, we don't know what sort of treatment will be needed, but I'd anticipate any treatment would affect the likelihood of falling pregnant (let alone being strong enough to carry). It also begs the question of how to cope with the possibility of death, and the conversations that would need to be had regarding the future of a relationship in that situation - such as any feelings of 'obligation' for the healthy person to stay in the relationship if the prognosis doesn't look good, and questions around the harvesting of eggs.

I am not afraid of treatments (though they won't be a barrel of laughs) - but I am afraid of dying. And I am afraid of my loved ones being part of that process. I've heard people say that cancer is not a death sentence, but it doesn't feel like that to me right now. I am terrified. And part of me feels like I'm letting people down, especially my partner as we have been planning for our future together. I know it's an irrational thought (and the oncologist said there was no way to have seen this earlier), but it's the way I feel.

This is quite a long post, but it was hard to stop once I started writing. Hope to hear from anybody who has advice on how to cope, and how to have these difficult conversations. Thank you in advance.

[Lampwork54]

Hi Mel17,

I'm really sorry you're facing this at age 30.  It must be incredibly stressful and difficult.  I don't know why you are having the numerous tests and ultrasound for different areas.  You just have to trust the experts.  Perhaps they are doing it this way because in their experience, it's the best way to locate your primary.  You can ask them that question though and I'm sure they will be able to explain it to you fully.  Part of this process is you asking the right questions about what is worrying you greatly.  There probably won't be answers to all your questions yet until they have more information.  I think this period of time is the most frightening because you don't know hat all your options are or how effective your treatment could be.  

I think what most of us have done here is plan for the worst and hope for the best.  I know that's not terribly helpful but that's all we have to go on in the initial stages.  Don't be scared of what is on the internet.  If you want to research then go to highly informed sites like major hospitals or research facilities.  Sometimes knowing survival rates and long term outcomes can help but the information has to be professional and qualified.  Knowing what the options are can help you make informed choices.  

The biggest lesson I learned was to trust in the people that are there with the skills and knowledge you need to get the very best outcome, which I had.  I couldn't have been luckier with the outcome as it was diagnosed early and treated aggressively.  It's a really hard path to be on and especially during lockdown without support from those closest to you so you will have to rely on your partner.  

Your question about future fertility is an important one so speak up and get the answers you need.  The quicker you can get answers to your questions the less stress you will be under.   We're all afraid of dying and that's just part of the process.  In the early days of diagnosis I talked to my husband a great deal about what lay ahead of us.  Sometimes we'd even laugh about things in our black humour moments.  I told my husband I would set up an online dating account for him and would give him great references before I died.  I didn't die so he's very happy to not have gone through the online debacle!  You have to just keep going on this journey and not give up.  If we didn't get hit by a bus today, we still have lots of tomorrows to fight for.  

I wish you all the very best on your journey and hope that you and your partner can come through this.  Please let us know how your journey progresses.  Stay strong and positive.  You have so much to live for.

[JohnDenning59]

Hello Mel, my name is Colin. So sorry to hear about your diagnosis at such a young age. I'm trying to think of some advice to give you, but being new to this cancer thing also I'm just starting this journey as well. I went the docs after having a six week stomach ache and because I started to turn yellow. The found a 4x4 cm tumor on my pancreas which has wrapped itself around a couple of major arteries. and affected three lymph nodes.

Anyway, enough about me. I'm 59 years old. But one thing that I do find has helped is staying positive. I'm guessing you've already probably heard that from your doctor, friends and family, but when you think about it, there are a lot of positives you can focus on.

For starters, my understanding is that cancer treatment generally has been taking leaps and strides for many years now. My oncologist said that they have a big success rate curing many types of cancers nowadays.

Secondly, and please, I'm no expert, of course, but the fact that they haven't located the main source of the cancer sounds like a good thing. If it was a significant tumor, one of the scans you've been having would have shown where it was. I'm assuming that you have had a PET scan?

My wife and I, from the moment we started to fight this thing together after the first initial shock four weeks ago have kept ourselves in good spirits. Personally, I feel that when I laugh, for example at a funny movie, I'm attacking this thing head on. Conversely, were I to give up and lay down, it would consume me. That's my theory, anyway. So to hell with it. Good health, great food, fun times and an almost annoying amount of positivity will be my savior, and I strongly advise this for yourself, too. We take a chance driving along the street these days, but at least with us, we know what we are fighting, and like I said, their not being able yet to determine the source, sounds like a good thing to me, because when they do find it, they'll blast it with radiotherapy or with chemo.

I'll send some prayers your way, Mel, and I'm sure that you and your partner will destroy this thing without too much of a problem.

Colin

[mel17]

Hi Lampwork54,

Thank you for your kind message - sorry it's taken me a while to reply, I've been researching/processing, so I'm getting down to all my admin at the moment.

It's definitely been a frustrating time and I'm sure there's a reason as to why the tests felt like they were all piecemeal. Since my original post, I have officially received the diagnosis of metastatic breast cancer, so at least that answers a few questions and helps me figure out what information to read more about.

I completely agree about the sources and having information at my fingertips to make informed choices. For me, it also needs to be communicated by the 'right person'. My partner's way of coping is to read all the data and want to tell me about it; however, I want to keep him separate (in my mind) from the oncologist/other specialists - I don't want to associate him with being the bearer of bad news, even though I'm sure the sources he's getting information from are reputable. It's a tough one to balance. I only started reading up about everything myself once they found the primary.

I'm so pleased your treatment worked out for the best - hearing those good news stories helps me at the moment! I will certainly be deferring to the experts in this battle.

I think my partner and I are slowly starting to find our groove with regards to trying to remain positive, enjoy the little moments and, if applicable, find humour in a dark situation. We still need professional advice about the future fertility aspect, but even without that I believe we're on the same page.

We have been called in to the oncologist tomorrow for, what I assume will be, the planning stage for treatment as he has now received all my medical results. It's going to be a rough day, but I will keep thinking positively and hoping for the best outcome. Having people like you in this community to talk to is an amazing help, so I thank you so much for your lovely message and for taking the time to help someone in need of support. It makes a big difference.

[mel17]

Hi Colin,

Thank you for your lovely message and for taking the time to write, especially when you're also very new to this too.

Since my original post I have received confirmation of the primary in my breast. Though it is metastatic, I am relieved to have had the primary found as now it can be treated appropriately. An oncology appointment has just been scheduled for tomorrow afternoon, so I would expect to receive recommendations as to my treatment options and timelines. I haven't had a PET scan, but maybe I'll be referred for one after tomorrow.

For both you and I, things appear to be moving very fast. How did you manage during those early stages ('the waiting game', as I'm calling it), before your diagnosis and commencement of treatment? Now I know (roughly) what's happening, I'm finding the waiting to be the most challenging part - especially when the loved ones I've told are asking me for updates and I have no news.

I'm doing my best to focus on the little positives - things like getting quick appointments during the early testing period when they should have been all booked up, being advised it's not the most aggressive form of breast cancer, etc. I'm naturally a bit of a pessimist/realist so it's a bit challenging at first to switch my mindset, but I'm slowly getting there.

It's a good point you make about knowing what I'll be facing today, as opposed to taking life for granted and just hoping that I won't get hit by a bus today.

I hope your treatment is going well and you're not experiencing too much in the way of side effects. And thank you once again for reaching out. Wishing you all the best.

[JohnDenning59]

Thank you, Mel. As for how we coped when we found out four weeks ago, I said to my wife and to my close friends and family from the outset that I needed for them to be strong for me. That meant no tears, just positive reinforcement and a 'you've got this' attitude. I find it interesting that I haven't even shed a tear yet myself. I refuse to. I also find it great that my friends and family are continuing t remain strong, also.

I had my very first ever chemo session today and it lasted about 5 hours, with two different chemicals and some glucose flushes in between. I also brought some chems home with me in a bag that is attached to a portal in my chest. I need to keep this on for two days, but to be honest, I don't even feel that it's there.

Other than that my finger tips are a bit tingly and my throat went dry for a bit, I feel fine. In fact, it is interesting having to follow a new regime. No cold stuff for a few days after chemo, is one. Warm food and drinks only. Another is just generally keeping an eye on yourself, and taking anti-nausea medication if that becomes a problem. Other than that, it seems to be business as usual.

I did get talking with another cancer patient a few weeks back and he what he said to me really stuck. He said that you will learn to be a bit selfish, but not in a bad way. Basically, if you don't feel up to having visitors, you don' have to have them. Go and lie  down, instead. That might sound wrong, but as I'm finding out, it's not., and visitors, believe me, do understand.

And I guess I'm lucky in a way because at 59, I'm completely bald so losing my hair I not a problem. I may lose my eyebrows, though, and my goatee. But even that's not a problem, I'll just draw some eyebrows on with a marker pen and wear a false beard 🙂

On that point, and despite what you might think, people, and I mean 99.9999 (recurring) percent of people, are fully on your side; at work, outside work, everywhere.

Take care, Mel, and your partner, too.  Hang in there, and join me in kicking cancer goodbye and becoming a 'survivor!'

Colin

[mel17]

Hi Colin,

That's so fantastic that you not only have such a loving support network around you, but that they're adhering to your wishes to remain positive and strong. I haven't figured out my strategy yet, as we haven't told anyone outside aside from our parents and my sister. I'm also in awe that you haven't shed a tear - obviously everyone manages this kind of news differently in a way that works for them... I've definitely been the opposite end of the spectrum, and feeling close to tears a lot. I think once my treatment starts in a few days I'll feel a bit more positive - like I'm actually 'doing' something about it.

I'm so pleased to hear your first session went well and you didn't experience too much in the way of side effects at the time. That's interesting about the 'no cold food/drinks' after chemo - I'm not sure if I've read about that or not in all my research over the last week... it all turns into a blur after a bit. Love your positive attitude about getting a marker pen and drawing on eyebrows etc! You could certainly have some good fun with that!

I've heard that advice from quite a few people actually. And as a person who always aims to please others and put them first, this is going to be an interesting period of transition for me. I'm very conscious of not over-doing it though... I'm naturally a bit of a homebody and I recharge by being quiet/alone, so I'm going to have to toe that line a bit differently from now on.

Thank you so much once again for your kindness. Same to you and your wife and family - please take care, and all the very best with your treatment!