topic Re: Cancer Survivor Shout-Out in I've just been diagnosed

Cancer Survivor Shout-Out

CaptainAustrali — Fri, 31 May 2019 10:59:56 GMT

I have massive sympathy for anyone who's just been diagnosed with cancer. It's such an insidious, crawling thing, the way it contaminates every aspect of your life. I think the worst past is THE NOT KNOWING, when you first get the hard word you have no idea how serious it is, if you have a chance, what will happen, who will take care of your kids, all that stuff.

I know that people get the disease, and they do not survive.

I thought it might be nice to have a post here where survivors drop in their stats a simple format, so that people newly diagnosed can find folks with similar profiles who have gotten through it ?

My suggestion (if you're willing to share) would be to just post a reply in this format:

My type of cancer: <clinical detail>

My prognosis: <a line about the severity and initial doctors remarks>

My survival time: <how long since diagnosis is it, and what are my prospects for continued survival>

My word of advice: <a line sharing your whatever hard-earned piece of wisdom you feel is most important>

I'll start, if you're a survivor haunting the forums, can I urge you to dig in as well ?

LATER EDIT: as a survivor, my intention was to reach out to people newly diagnosed, distressed as I was, scared as I was, and show them that they are still in a chance, and that they should find hope and use that to empower their fight. But as folks have come here and posted their stories, I feel that feeling .. you know it ... that rippling of the skin on the back of your neck .. I feel inspired. People who were diagnosed as TERMINALLY ILL, and who have gone on to live a couple more decades and counting. When I was diagnosed, I thought my death was imminent, and I'm still kicking. Thing is, as a survivor, the hope that I carried through treatment has morphed into some kind of loose acceptance -- reading some of these people's stories I feel my own hope rekindle, and realise that I have every chance of sticking around for a few more decades myself. If you're someone newly diagnosed, I hope you can find that spark of hope inside yourself, and protect and preserve it as you fight this crappy disease.

Re: Cancer Survivor Shout-Out

CaptainAustrali — Wed, 29 May 2019 05:50:57 GMT

My type of cancer: Stage 4 tonsillar cancer, locally advanced to 2 lymph nodes

My prognosis: without successful treatment, 6 months to live

My survival time: coming up on the 3 year mark, cancer free and hopeful of living another 20years +

My word of advice: preserve your hope and mental health - don't invest time in negatives & quack cures, don't be intimitated and trust your doctors, own your disease, own your cure

Re: Cancer Survivor Shout-Out

Scottdjones — Fri, 31 May 2019 04:41:02 GMT

I was diagnosed with 2 Grade 2(malignant) oligoastrocytoma brain tumours back in 2006. Both inoperable so I decided on radiation and chemotherapy. The initial estimate of life was 5 years. That was 13 years ago and I am still here. Tried a lot of complementary therapies along the way. Chinese herbs, apricot kernels, meditation, high dose Vit D3 etc.. etc.. I am in good health both mentally and physically with no seizures. Happy to answer any questions posed. I have worked full time since initial radiation treatment. 54 now and just having annual MRI and blood tests now.

Re: Cancer Survivor Shout-Out

Wayne308 — Fri, 31 May 2019 04:47:54 GMT

My type of cancer: Penile

My prognosis: Stage 3, full penectonmy and bilateral node disecction of groin and pelvic nodes.

My survival time: June 2014, and nearly at my 5 year window, so hopefully in July I will get released from treatment and monitoring

My word of advice: Always make sure that the specialist you are seeing knows what they are looking for and talking about and if not seek a second opinion, make sure that the diagnosis in timely and correct.

Re: Cancer Survivor Shout-Out

Marcus — Fri, 31 May 2019 04:50:42 GMT

Hi.

Non Hodkins Lymphoma- large cell

The size of a Football wrapped around my Aorta about to cut the blood supply to my Heart, given 2weeks to live without treatment

Diagnosed in February 2006. All clear in May 2007. 12 years Cancer free

Reachout for help when required and

Don’t sweat the small stuff. (Easier said than done )

Re: Cancer Survivor Shout-Out

JJ42 — Fri, 31 May 2019 05:01:02 GMT

My type of cancer: Breast cancer - DCIS plus Grade 2 tumour, Stage 3. Lumpectomy followed by radical mastectomy then chemotherapy.

My prognosis: My oncologist was optimistic, but I found it hard to believe him when only just over 60% of women survived breast cancer for more than 5 years at the time I was diagnosed.

My survival time: I'm in my 25th year of survival and while I rarely think about it, I am not oblivious to the fact that I can never be absolutely certain that it won't come back. Look at Olivia Newton-John!

My word of advice: Never minimise how you feel during your treatment and after treatment finishes. Find yourself a support group that allows you to be as big a mess as you need to be. By being able to be real with others who've been there and really get it, you don't have to worry your nearest and dearest with your fears, but you do need to have a safe place to express them where no one will try to 'fix it' for you. In Sydney the Life Forcer Cancer Foundation runs weekly support groups for people dealing with the emotional impact of any cancer diagnosis. I credit my Life Force support group with saving my life!

Re: Cancer Survivor Shout-Out

kj — Fri, 31 May 2019 05:12:19 GMT

Type of Cancer Pancreatic tumor in head of pancreas.

Prognosis Had surgery then during chemo I was told I was terminal ,chemo was ended early because my body could not take anymore.

Survival time Diagnosed 2010 into ninth year of survival,with yearly check ups.

I still take it one day at a time.and enjoy life

Re: Cancer Survivor Shout-Out

crazzychris — Fri, 31 May 2019 06:23:00 GMT

Diagnosed in 1986 with Hodgkins Lymphoma Stage 3. Treatment chemotherapy and radiotherapy. A very curable cancer. 33 years in remission.

2011 Breast Cancer Stage 1 mastectomy most likely caused by radiotherapy in 1986 Good prognosis Remission 8 years

2012 Breast Cancer Stage 1 mastectomy Good prognosis Remission 7 years

2017 Bowel Cancer Stage 2 Surgery 80% chance of return Remission 18 months

You can’t change it, so you have to accept it.

Re: Cancer Survivor Shout-Out

Ron50 — Fri, 31 May 2019 06:25:59 GMT

Cancer stage 3c into six nodes

Prognosis. With treatment three years maximun.Highly aggressive.

Survival time 21 years and 4 months.

Surviving survival is not easy, I had to be my own advocate and make sure that all long term surveilance was adheared to. Stay vigilant and survive.

Re: Cancer Survivor Shout-Out

Ron50 — Fri, 31 May 2019 06:26:58 GMT

Cancer stage 3c into six nodes (colon cancer)

Prognosis. With treatment three years maximun.Highly aggressive.

Survival time 21 years and 4 months.

Surviving survival is not easy, I had to be my own advocate and make sure that all long term surveilance was adheared to. Stay vigilant and survive.

Re: Cancer Survivor Shout-Out

karinet — Fri, 31 May 2019 07:22:30 GMT

Love this idea!

My type of cancer: stage IV melanoma

My prognosis: 24 months in october 2015

My survival time: It's been 3.5 years and I am hoping for another 45!

My word of advice: live your dreams, live to the fullest, you've got only one life, so take care of your heatlh and make the most out of it! You can achieve anything.

Thank you for helping spreading hope, that was a great idea...

Surviving is not an easy journey, and I made it my life mission to help survivors who are in the clear to embrace their second chance at life xxx

Re: Cancer Survivor Shout-Out

Marcus — Fri, 31 May 2019 07:58:15 GMT

I agree great idea

Re: Cancer Survivor Shout-Out

Pete — Fri, 31 May 2019 08:34:14 GMT

My type of cancer: Bowel cancer. I'm honestly not sure about the medical terms, I just had a blockage in my stomach that was blocking food from getting through, and causing mildly-painful stomach cramps, and that was the only symptom I ever had (that my original GP missed, for 11 months. Always remember to get a second opinion if you feel like you want one). I don't even recall what stage it was, I don't remember anybody telling me. But all my other scans were positive.

My prognosis: Quite positive. Like I said, once they found the tumour, they scanned me for others and couldn't find anything anywhere. I healed up well from the surgery, and they hit me with the hard stuff, chemo-wise.

My survival time: It's been 18 months since the surgery. So I guess I'm still making my way through the experience, but all my doctors have been very optimistic. It still worries me, some days, and every time I have a blood test or a CT scan, there's a part of me that gets nervous, and I don't think that will go away anytime soon.

My word of advice: On my second cycle, I needed an additional minor surgery. I was feeling grumpy and irritable about it, and I had the good sense to apologise to one of the attending doctors for not being in a good head space, like, at all. And I still remember, he looked down at me (quite kindly, without any judgement) and said, "It's okay, we get it. Some days, things are just sh*t." Now, forgive the crudity, but I found that was the most profound advice I ever got. Some days, awful things happen for no reason, and you just have to roll with it. Some days, you might be scared or angry or sad. Some days, you might really struggle. Some days, things will be just awful. Those days, the best thing you can do is survive, and try again tomorrow. And, that's okay.

Re: Cancer Survivor Shout-Out

JJ42 — Fri, 31 May 2019 08:41:13 GMT

What a fantastic response from the attending doctor! It feels much better when people acknowledge what your reality is rather than offering platitudes. He was right - that day WAS sh*t for you! For him to validate that it was perfectly normal for you to be snarky in the circumstances was the kindest thing he could have said.

Re: Cancer Survivor Shout-Out

kj — Fri, 31 May 2019 08:49:01 GMT

Great Topic Captain 👍

Re: Cancer Survivor Shout-Out

Marcus — Fri, 31 May 2019 09:04:14 GMT

Hi.

I think the worry around ct scans and blood test time is normal

12 year cancer free and I stopped the whole blood tests thing because I found I was just stressing out about the whole thing. It got to the point that every time my yearly checkup was approaching my wife would be able to tell my yearly checkup is approaching #stress

Ridgy’s Cancer Survivor Shout-Out

Ridgy — Fri, 31 May 2019 20:55:21 GMT

Cancer type: Neuroendocrine Tumour (NETs) of small intestine (locally advanced to 3x lymph nodes).

Prognosis: Unknown (incurable but treatable). Stage 3b/Grade 1 well-differentiated/70% chance of recurrence.

Survival time: 2.5 years (@2019). Post-surgery on “active surveillance” (annual blood/urine tests and nuclear scans).

Word if advice: It is scary to be told you have a rare cancer (approx. 10,000), but it is slow growing and therefore time to get a 2nd-3rd opinion on whether surgery vs PRRT is the best option. Find a MDT that has dealt with NETs. Join NETs support group around the world to get best advice/ support.

Re: Cancer Survivor Shout-Out

traebo — Sat, 01 Jun 2019 00:17:01 GMT

I usually say this to others, but hearing it be told to you... its different. Definitely teared me up reading it.

Re: Ridgy’s Cancer Survivor Shout-Out

Marjorie — Sat, 01 Jun 2019 00:23:59 GMT

Cancer type: Merkel Cell Tumour. Near elbow.

Was told it is a rare form of cancer, and survival rate not good. Drs insisted I have 5 weeks of Radio Therapy.

2 years later and I am still here and feeling fine.

Advice: Each journey is different. It changes who you are. It gave me a huge wake up call. I appreciate each day and learning to look after myself (eating better etc).

Thanks for starting this thread.

Re: Ridgy’s Cancer Survivor Shout-Out

chrishayward — Sat, 01 Jun 2019 01:14:02 GMT

Hi,
My type of Cancer: Ovarian stage 3c
My Prognosis: Surgery followed by OC diagnosis and stage, then 18 weeks of two types of chemotherapy
My Survival: I am now in my 6th year of no re-ocurrance, or what's is called remission., and am being monitored every 6 mths by my GP.
My Words of Advise: Don't Dr Google. After the initial shock and getting through the chemo, plus a few other surprises along the way, you just have to get your head around it and basically deal with it. You can't change what is there or wonder about the "whaf if's" or "why me", life likes to throw us lot of curve balls, we find the strength to carry on. Listen to your oncology nurses and your oncologist. If something is worring you ASK don't be shy its our body and at times we just need to confirm that what's happening is the norm or something else. I did find crying helps a lot I did most of mine in the shower each morning and a new day begins. Take one day at a time, get out into the day if your able a short walk just sitting in the sunshine can lift your mood and make you appreciate every day. I have also learnt that I need to be kind to myself, you are a different person after all this: I don't have the energy I once had and do what I do in my own time I no longer think I'm Superwoman. Also be aware of friends who know everything about Cancer if some friends upset you tell them so, people have a funny way of thinking they are helping you by telling you everyone they know cancer's journey and then they are no longer with us, you don't need this negativity. Be mindful also of your own mental state if you need to speak to someone other than your family or friends help is there for you again ASK. Remember everyone's Cancer is different even your own.