AFF Cancer Survivors Thread

[Bindibuys]

I have had Osteomyelitis at my forehead, which means an infection of bone. (why I always have a fringe)
It would be a very lonely thread.

If you don't mind me asking, what repercussions have you had from this?

I have it on my ankle from MRSA infection and no one will really explain or let me know what issues I will have in the future....

Hi Mumfreqflyer, acquired mine back in the late 1960's I fell off a monkey bar in the park at Nyngan and suffered concussion. Next day a tooth fell out, and I was told that the infection entered from the open gum. An infection will go to the weakest part of the body???? and my head was it at the time.

I looked like a Unicorn with this massive growth sticking out of my forehead. My parents were told to make funeral arrangements for me, as they had no record of anyone surviving the pain. There was talk at one stage about inserting a plate, I guess they had no idea how far the infection had eaten thru my skull.
Penicillin injections twice a day, multitude of tablets, & trips to the Children's Hospital - then at Camperdown (Syd)

I mainly remember the screaming in pain, as a child the thought "just die" was not in my vocabulary, so I would just scream and cry and exhaust myself so I would sleep, - no pain while you sleep.

The Doctor ended up lancing my bulge, and I was sent home to "squeeze" the puss out. I still vividly recall sitting over a mirrored coffee table, pushing, probing to get all of the puss out.

Once it was all over, migraines stayed - to this day, but I don't know if it is a direct result.
There is very little tissue now between my skin and bone, and you can feel every little bump and crevice of where the bone has been eaten if you run your finger along my forehead.

As mine is a "non moving" bone compared to your ankle, I don't think there is much comparison, but I would assume your ankle will be weaker as the bone density would have been compromised.

Medicine has come a long way in 45 years, but I still feel like screaming & I physically cry in pain when I have a migraine, sleep is my best buddy.

(sorry - a bit off track from Cancer)

 

[drross]

Thanks....

I'm 32. Broke and dislocated my ankle back on 5th April had an ORIF with pins plates screws on 8th April. Infection noticed at my 2 week follow up but no swabs and put on generic AB's. Surgery on 12 June to remove diasssis (spelling?) screw and infection found then.

Picc line with vancomycin for 6 weeks then oral ab for 1 month until surgery a couple of weeks ago on 4th Sept to remove all metal.

Infectious diseases lady at hospital told me it was hospital acquired :/

My foot is very stiff and doesn't move much and I'm only just barely hobbling around very slowly. Hard with an active 2.5 year old and almost 1 year old :/

Sounds like you're through the worst of it apart from the physiotherapy you'll need to try and get some mobility back

 

[Heleigh]

I admire the strength and courage of not just those who have survived but also their families and friends, it must be a very difficult thing to deal with, and I commend you all.

Yes to strength and courage. Had a lumpectomy in March and a second in April last year but on 30th July this year I had to say good bye to the girls and say hello to replacement. No cancer in Lymph nodes so no further treatments required.

For family support a big thank you to two brothers (living in SYD and losing income [self-employed]) and cousin (retired and living in Melton NSW) who provided 24/7 care over five weeks which included pre admission and 11 day hospital stay. I do have to say that I was grateful for not a lot of other visitors during that time.

A thank you to my neighbour providing meals and helping with housework, my friends for not visiting excessively but resuming when my last brother left to keep me occupied, help out with home and when able to go out for taking we.

One thing I have decided flowers die but the ”Get Well” balloon makes me smile every day even now it’s six weeks old and very deflated.

Will be back at work in November if able to carry my work gear, but have decided to retire the end of this financial year as life is too short (maybe another 30 years) and have sufficient funds to spend quality time with family and enjoying my friends company

 

[AngieP]

My story started in 2008 when I was tired all the time. For six months I constantly felt exhausted but I reasoned that as a full time working mother with two teenagers who did lots of sport and with a very active social life then I should be tired! But every morning I would wake up feeling like I hadn't even slept. The thing that made me finally do something about it was my cat - at night when I was reading in bed he would climb up and paw at my chest - he had never done this before and it was very unusual. So I went along to my GP, had some tests, then some more tests and a biopsy and was told all was ok. Two nights later the phone rang and my GP told me to come into his office straight away and bring someone who could drive. Unfortunately that person had to be my 18 year old daughter. The news was bad - really bad. A very large advanced tumour which we eventually found out had spread to my lymph nodes. By the next day I'd had a plethora of tests, CT scan, etc and by the next week I was at a private hospital being told that I would have to have my breast and all my armpit lymph nodes removed. And the next 12 months were filled with doctors, chemotherapy, radiation, tears, love, kindness, care, surprises and deep lows. Sometimes my heart felt so big with love for my family and friends. My biggest moment was one I didn't share with anyone - my chemo rounds had finished - I had been strong and resolute when all I could do was crawl from bed to chair - I was in the bath and this deep well of sadness and grief burst from me - I cried really hard for about a hour, I screamed and shouted and let it all go. I got myself out of that bath ready to start rebuilding my life. Cancer is a beast but we all have to work out a way to live with it and go on - sometimes one very fragile step at a time and sometimes going two steps back first. I've learnt many lessons from cancer but I've come out the other end a better person who thinks about what really matters. 'Yeah I want to do that trip to Iceland' (planned for mid next year) and 'Yeah I will go to cooking school in France' and 'I think those people who weren't supportive I don't need in my life'. I don't sweat the small stuff anymore but I do hold onto family, great friends, my travel hobby, my reading and trying to live the best life I can for as long as I can. Two of my fellow chemo buddies didn't make it - going to their funerals was so very hard - to look at their families suffering whilst being grateful that I am still here. So to you Cancer Survivors in AFF - congratulations, you did the hard yards, and here's to more travel and fun!

 

[Major]

Outstanding post AngieP...thanks for sharing.

I think a little outpouring helps

 

[The Rok]

You have no lymph nodes - surely not, otherwise you may be in trouble . I hope you meant that there was nothing found in the lymph nodes, which is cause for positive feelings.


I suppose it depends on how one accepts it and the prognosis. I have always been an eternal optimist.

My story: I went to my doctor for another unrelated issue in May 2000 and had noticed one of the moles on my back had turned black and was itchy. My usual doctor wasn't available so I was booked in with a locum. He had just spent 3 years at RPA in oncology, so when he said there was a (dried) blood blister on top of the mole, he scraped it away and then said he didn't like the look of the mole underneath. He asked if he could excise it and as I was already on my stomach I told him to go for his life. A little injection of local and he cut it out and showed it to me before sending off to pathology - looked like a space invader with tentacles.

That was a Friday and I went back on Monday at 9am for the pathology and follow up on my other issue. As I have a background in insurance (which the locum knew), he handed me the report and asked me to read it and ask about anything I didn't understand. Well, I remember reading "spreading invasive malignant melanoma" and swearing with a sinking feeling. "Clarke level 3 - well that was moderately bad", I thought, "but not the worst diagnosis" - I'd had clients with worse.

Needless to say, my (locum) Dr had organised an appointment at 11am with a plastic surgeon at The Wesley Hospital. Long story short, I booked in for surgery at the end of my surgeons list the next day. I wasn't waiting - my mind was racing and not even a Valium helped me sleep - that came with the GA the next day.

Thankfully, my margins were clear on the re-excision (11cm long, 4 cms wide and 1cm deep - a mini cricket pitch) and follow up chest x-ray and PET scan were clear. So have been every physical exam with my locum (starting every 3 months got the first 2 years, 6 monthly for the next 3, then yearly subsequently), as well as my annual mole scan.

Not surprisingly, I gave both my specialist and locum bottles of 1988 St Henri for helping me through. I hope they enjoyed them. I certainly enjoy every day I am alive. I have used my fortunate situation to be a spokesperson for Qld Cancer Council and in my work role, to do pro bono work with terminally ill patients referred by the Cancer Council. Having empathy is so important.

Nothing found is maybe what I meant. I think I was too relived to take on board the actual terms he used, I just knew it was good news.

 

[QF WP]

Sharing ones story is cathartic and often shows (to me) that there are plenty of people out there in the world much worse off than me - for which I am eternally grateful that I went to my Sr when I did. I asked my Dr how long before it would have spread and I remember thinking how I had dodged a bullet.

I went to the Dr after shaming myself - a friends daughter had leukemia and I was getting their regular updates about her journey. Glad I finally got over the "she'll be right" attitude.

Being in the industry, I got a lump sum payout from an insurance policy, however like many clients I didn't have enough. What I got I donated - money wasn't the objective . Gave my friend some of it to take his family on holiday.

 

[casanovawa]

I haven't got cancer myself, but have had a few other health problems I have had to live with through my life...

But after being at work over the last few years and seeing one guy in probably his mid to late 50s contract Alzheimer's Disease and after quitting and going away to Africa for a year to do some missionary work have to come in with his wife by his side and read hesitatingly from a bit of paper about his experiences (I sometimes think I am getting Alzheimers with my forgetfulness (fingers crossed not)), to have another guy in the office suffer a minor stroke and shortly afterwards retire, and then have my brother die of a heart attack at only 49 last year, I am VERY much of the opinion that you need to live each day, month and year of your life as it happens and not be lacsadasical or put off your dreams/goals to retirement or some nebulous future date, and I try to spread that message to people anyway I can, don't wait till your in a doctor's office waiting to hear a prognosis or on an operating table to wonder what you could have done and how you wish you had more time...

And don't wait till you have have a near death experience or lose a close friend (just a couple of months ago a friend who is 43 had a heart attack and had to be rushed to hospital to be treated) or family member to realise we're not promised or guaranteed anything in terms of the time we have here and our health...

So good luck and well done to everyone here...

 

[SamR]

... and by the next week I was at a private hospital being told that I would have to have my breast and all my armpit lymph nodes removed. And the next 12 months were filled with doctors, chemotherapy, radiation, tears, love, kindness, care, surprises and deep lows...

Angie, can I ask - have you had any problems with lymphedema?

My story is kind of similar. I'd been exhausted for months but just figured I'd been working really hard. Late 2008, I woke up one morning with a sudden big ache right underneath one breast that was a bit lumpy. A surgeon had told me years before that cancer didn't come on with sudden pain or sudden lumps, so I didn't think anything of it. Nonetheless, I went to see my doc that day during my lunch break. I'm a bit of a doofus, always walking into things, wondering where I got the latest mystery bruise, so I thought I'd had a run I with a large object and forgotten about it (it happens, really). I said as much to my doc and lifted my breast to show her. She took one look at it and said "no, that's cancer". She sent me straight up the road for tests and I didn't go back to work that day.

The next morning I was diagnosed stage 2 with a 3.5cm tumour. I was on the operating table within a week. It was only once they got inside that they could see I was actually stage 3 with a 5.5cm tumour and it was galloping. They removed all my lymph nodes from my chest to my armpit and down my left arm. The cancer was in most of my lymph nodes, but thankfully, nowhere else.

I was treated for a bit over a year. Chemo, radiation, Herceptin. While it was, as my surgeon described it, "a particularly badly behaved cancer", my medical team knew exactly what they were dealing with, so they threw everything at it. It was fricking brutal, but it worked. I'm still having preventative treatment with a monthly injection of Zoladex and I'm ok. After all this time, I'm actually off to another surgeon on Monday to see about a good breast reconstruction.

But, one of the long term souvenirs I have is lymphedema. I don't have anything like a matching pair of arms. :/ It's been playing up a bit lately, of course - just as I'm about to go to the US, and long haul flying is a big trigger for swelling for me. Macquarie Uni Hospital has developed a lympho liposuction technique that I will have one day, maybe next year. It's a cough! If you don't have it, I'm genuinely pleased for you.

It's weird. All the cough we go through with treatment does toughen you up, but I've seen lymphedema physically and deeply emotionally affect so many otherwise tough survivors, me included.

 

[AngieP]

Hi SamR - sorry to hear of your experiences. Yes I do now suffer from lymphoedema in my arm and down the side of my chest. I have a fortnightly manual lymphatic drainage massage through my local hospital to manage it - this is a free service that may be available to you - worth checking out. Also with regard to flying (I'm in Palm Cove at the moment) I wear compression socks up to my knees as well as a compression sleeve and they do help with the extra swelling. On my flight from Melbourne to Dubai last year I made sure I got up at least every hour and did 5 minutes of stretches and exercises at the rear of the plane - as I was on the A380 it was great cos I used the first couple of stairs to step up and down on. Quite a few other passengers were doing the same thing and we got some conversations going! And I agree re the side effects of our many treatments - the side effects will continue with us through our lives and are at times a nuisance and uncomfortable, as well as the tiring routine of ongoing therapies, but in the end we are still here! It is tough emotionally - no matter how well supported you are this is your own journey - only you can be inside your head and know how it feels to come face to face with your own mortality. I salute you and the other AFFers who live with this every day.

 

[QF WP]

Thanks for sharing your stories - love others stories to see how lucky we are still here.

Calling Straitman to the white courtesy phone...

 

[Deleted member]

I don't have a story like those here, ( not about me anyway) .
Like QFWP I have an insurance background, I have some wonderful and some sad stories, being so close to those that suffer, survive and so on, is a humbling experience.
thank you all for sharing, and reminding me at least, that some of the stuff I have let bother me in life, is so meaningless in the grand scheme of things.

I did have a minor scare recently, i had a lump on my upper lip removed ( for the second time in 5 years) the histology came back positive, but it turned out it was only an SCC.
However it did give me pause to think.

 

[QF WP]

I don't have a story like those here, ( not about me anyway) .
Like QFWP I have an insurance background, I have some wonderful and some sad stories, being so close to those that suffer, survive and so on, is a humbling experience.
thank you all for sharing, and reminding me at least, that some of the stuff I have let bother me in life, is so meaningless in the grand scheme of things.

I did have a minor scare recently, i had a lump on my upper lip removed ( for the second time in 5 years) the histology came back positive, but it turned out it was only an SCC.
However it did give me pause to think.

Exactly GPH, my thoughts completely. I've had some of my best learning experiences from my pro bono terminally ill clients.

 

[Pushka]

MrP's first training work out of Uni was with a large Insurance Company. At the ripe old age of 22 most people aren't thinking of life insurance and in those days there was no such thing as the SG which usually comes with built in Insurance. But being employed by this company he decided to sign up.

Little did we think that less than 9 months later that this Insurance Policy, thankfully not needed to be used, was the only policy he would be able to obtain for many years thereafter.

One of our life changing acts as a result of his diagnosis is that we are always insured to the hilt (be that life, house, car, hospital etc). And we've had to claim on a range of these since.

Thankfully not that initial Life Insurance though.

 

[drross]

I don't have a story like those here, ( not about me anyway) .
Like QFWP I have an insurance background, I have some wonderful and some sad stories, being so close to those that suffer, survive and so on, is a humbling experience.
thank you all for sharing, and reminding me at least, that some of the stuff I have let bother me in life, is so meaningless in the grand scheme of things.

I did have a minor scare recently, i had a lump on my upper lip removed ( for the second time in 5 years) the histology came back positive, but it turned out it was only an SCC.
However it did give me pause to think.

SCCs on or near lips are not insignificant. you need regular skin and 'gland' checks.

 

[QF WP]

However, I love reading stories like this in the fight to erradicate cancer from our vocabulary:

Discovery of 'genetic superhighway' mutation expected to lead to new treatments for rare ovarian cancer that strikes young women and girls
Last updated: 23 January 2015 at 12am PST

A groundbreaking TGen-led discovery of the likely genetic cause of an ovarian cancer that strikes young women and girls is featured in the annual report of the American Society of Cancer Oncology (ASCO).

The discovery by an international team led by TGen, the Translational Genomics Research Institute, is included in Clinical Cancer Advances 2015: ASCO's Annual Report on Progress Against Cancer. With more than 35,000 members, ASCO is the world's leading professional oncology society committed to conquering cancer through research, education, prevention, and delivery of high-quality patient care.

The study, "Small cell carcinoma of the ovary, hypercalcemic type, displays frequent inactivating germline and somatic mutations in SMARCA4," was initially published in the renowned scientific journal, Nature Genetics.

Nearly all the patients in this study lost the function of a key gene called SMARCA4, revealing a "genetic superhighway" that drives this disease. This type of cancer usually is not diagnosed until it is in its advanced stages. It does not respond to standard chemotherapy, and 65 percent of patients die within 2 years. It has affected girls as young as 14 months, and women as old as 58 years -- with a mean age of diagnosis of only 24 years old. In this study, the youngest patient was 9 years old.

Much of the work in this study was inspired by the memory of Taryn Ritchey, a 22-year-old TGen patient who in 2007 lost her battle with ovarian cancer, the 5th leading cause of cancer death among American women.

"We set out to uncover any small sliver of hope for women afflicted with this rare cancer. What we found instead are the nearly universal underpinnings of SCCOHT," said Pilar Ramos, a TGen Research Associate, and the study's lead author. "By definitively identifying the relationship between SMARCA4 and SCCOHT, we have high confidence that we have set the stage for clinical trials that could provide patients with immediate benefit."

"The past decade of research has taught us that cancer is a vastly complex disease. Profound patient-to-patient variability has made treatment and diagnosis for many tumor types at times very difficult. In this case, however, we have found a single genetic event driving SCCOHT in nearly every patient," said Dr. William Hendricks, a TGen Staff Scientist and another author of the study. Medical News Today: The Latest Health News

 

[drross]

However, I love reading stories like this in the fight to erradicate cancer from our vocabulary:

It's a rare type of ovarian cancer. Had one of my daughter's friends succumb to it aged 16..any advance is welcome

 

[QF WP]

I wish I had more ability to donate now - but when the inter generational transfer of wealth happens, I'm going to make it happen.

 

[QF WP]

Just to show it can happen to anybody:

Former NSW premier Nick Greiner has revealed his own battle with breast cancer, shining a light on the rare male disease.

https://au.lifestyle.yahoo.com/health/news/a/26535761/men-can-get-breast-cancer-too/?cmp=ydn&cmp=ydn

 

[SFSC]

I had a melanoma removed in 2012 from my left leg above the knee. Many hours sitting on my Mal waiting for a wave back in the 1960's, I guess. Not many could afford wetsuits then.