12 Years Cancer Free :)

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Hi Lovely Pink Ladies. 
Thank you for reading my post today!!!

Well, I am now officially 12 years cancer free in late August 2023 but I have had a few scares along the way as we all expect may happen including my latest saga.

In June this year I had my routine Mammogram and Ultrasound done at Qld Xray. Of course I was thinking that it would be fine. Mammogram seemed to be ok then I was waiting on the ultrasound soon after. During the ultrasound the radiographer was very thorough as you would expect. Paying particular attention to the left breast and armpit where my original cancer was. I asked if there was anything found and she said she needed to see the doctor that does the reports. Then as the radiographer walked out of the room to speak to the doctor that checks the results I waited expecting her to walk back in and I could leave.
How wrong was I? The radiographer came back into the room and asked me if I had an infection of any kind? I said no. Had an immunisation in my left arm? Again, no. Then she asked me if I had a cut on my left arm? I again said no, and then asked why was she asking me all these questions? I could tell by the look on her face straight away and that the length of time she was out of the room possibly meant something ominous was happening.
The radiographer then said that they had found something on my ultrasound. My heart literally sank in response. When something is found on an ultrasound you know how that feels right? 

I asked what was it they had found? The lady said one of my lymph nodes was enlarged, and that it wasn't on any previous tests done. Luckily for me I'd had my previous Mammogram and Ultrasound in the same clinic so they could compare my results first hand and on the spot. I said how enlarged was it? She said enough to be concerned. Then she said she would again speak with the doctor. Of course my head was spinning, my first thought was CANCER!!!
I could feel the tears well in my eyes, as I am now typing this. I get so emotional when it comes to my mental state regarding this horrible disease. The radiographer seemed to take longer than the first time to speak to the doctor. About 20 mins later she returned again and she could tell how concerned I was. The lady handed me a request letter to get a FNA (Fine Needle Aspiration) done. I said would that be in a couple of weeks? The response was no you need to get this done by Tuesday next week urgently. I asked was it only the lymph nodes in question and whether they had found a lump? The lady said no only the node and that the Mammogram hadn't picked up a lump nor the Ultrasound as such. So I needed my gp to give me a referral. This was a Saturday afternoon I was walking out of there so by the time I got back to my car after paying my bill it was too late to get an appointment with my gp and the surgery was closed. I left a message on the machine to say I urgently needed an appointment.

Once I got home and my husband asked how I had gone at my appointment, I told him what had happened. The look on his face? He said to me, "oh no, is it cancer again?" I said I don't really know? I then told him how they want me to have an FNA immediately due to what was found. He hugged me straight away and I burst into tears. My husband knows exactly what I was going through with the worry and was my rock going through my breast cancer in 2011 to 2012. Then my husband asked how enlarged was it? I told him it was 6mm and with bulky features and poorly preserved hila. Also, that they wanted this done to rule out local recurrence. Category 3: INDETERMINATE FINDINGS. We were both so worried and I explained that I could not reach the gp yet as the surgery was closed. My husband said ring again tomorrow morning. Before I could ring the gp rang me and asked what was so urgent? I explained to him what had been found and he immediately arranged for a referral which was sent to me via email and to Qld Xray. On Monday they rang me with an appointment. They gave me one for the following Tuesday morning, which was the 20th of June at 10am.

Driving to that Tuesday appointment, again my head was racing and I was wondering if I  would have cancer again and if I would have to go through chemo again and all the craziness that goes with it. I had my FNA done and had the feeling that there wasn't enough cells captured for a diagnosis on the enlarged lymph node. Sure enough the person that had done the FNA had trouble getting cells off the larger node. She asked me if she could do some multiple sweeps as she called it on other nodes in the area? I said. "I am here now, go for it."

Of course I was so anxious waiting the next 2 days for my gp appointment, where I got the news of not getting enough cells for an accurate diagnosis on the enlarged lymph node. I just knew it! I was not angry, just disappointed as I was hoping that it was all over. Of course it wasn't and only the beginning. The gp said that he would put me into the public system for an immediate appointment. I got a text the following week that it could be up to 30 days for an appointment. Then the next day I got a letter to say CATEGORY 1 30 days wait. I was so shocked of course as being a former cancer patient with possible recurrence was significant to me. I couldn't wait 30 days for an appointment, it would have driven me insane with the worry and the waiting. So I again went to see my gp who told me he could give me a private referral if I wanted? I said yes please.

The private doctor rang me with an appointment for the following week and that he wanted me to get a PET Scan done immediately. I felt so relieved even if I had to pay, at least things were happening. Then a day before my appointment with the private doctor I got a text with an appointment with the public hospital. The receptionist at the private surgery told me to take the public one because the doctor in question is also head of the department at the public hospital. I had to wait a week but at least I had a time frame and I could cope with that knowing a date.

The next day I got a phone call about the PET Scan and an appointment for the next day which was the 4th of July. I had to have a special diet to have my PET Scan done. I said to the man that rang me with the details, about how I am a Coeliac so I know all about a special diet as such. He said it was for everyone that got the scan so no biggie. Lol! Private joke obviously? 
They told me to drink a lot of water for the scan. When you have had 3 children holding it isn't easy. I was told I could go to the toilet but of course while I was being infused with the tracer I was hooked up to a machine which was supposed to be an hour. After 45 mins I couldn't hold it any longer lol. The nurse said it was long enough for the procedure and that I could bolt to the toilet once I was unhooked. I sure did lol!!! 
Then after the scan which was about 20 mins or so I again bolted to the loo! A little embarrassing for me but a necessary evil. After a nice cuppa and my gluten free snack I had brought in I was done.

I then waited for the results. I was amazed because I had the results around 6pm the same day. The doctor was incredible giving me this relief so soon. PET SCAN ALL CLEAR!!! If I had cancer anywhere in my body it would have lit up like a Christmas tree I was told. I had a PET Scan done back in 2011 too as a result of my highly aggressive non-invasive ductal carcinoma. It was a 3rd grade tumour and stage 2 non-hormonal. No secondary cancer which is what they were looking for back then.
OMG I was so thrilled and my husband too. I cried with relief although the scan has picked up a 3rd autoimmune disease to contend with. Then the wait to see the doctor at the public hospital. They examined me and told me that they wanted a follow up ultrasound done in 6 weeks time.

I've had the follow up Ultrasound last week and again the lymph node is still enlarged. The radiographer, oddly enough, was the same lady I had in late June with my first Ultrasound. Again when she left the room and was away for 20 mins I was concerned. I am at my wits end over this, was expecting that it had returned back to normal? No such luck!
They still have no idea why the node hasn't returned to normal and similar in size. So now I will need another follow up Ultrasound in 3 months time. My gp has already given me the referral and now I need to make another appointment. It has been suggested that I have a Mammogram next year in June 2024. Although I am still a Category 3 it is now classed as 'PROBABLY BENIGN FINDINGS' on the latest Ultrasound report.

I would just like to know why this lymph node is still so enlarged? I realise it can be from an infection and that it can be that way for months...but? They are still going to monitor it so at least I am still in the hospital system should anything change right? Watch this space for next scan results.

Finger's crossed for me that I can get off this emotional rollercoaster again please!!!  :) 

Comments

  • arpie
    arpie Member Posts: 7,677
    edited September 2023
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    Golly Gosh - what an emotional roller coaster ride you've been on, @Mia1965 .....  that is terrific that the PET scan was all clear ..... and good that they are actively monitoring the enlarged node - but totally understandable that you are anxious, as we all would be. xx. Sending you big hugs 

    Out of interest - have you had a CRP blood test any time recently?  (The C-reactive protein .. CRP .. test is a blood test that checks for inflammation in your body.)   I've had arthritis for the last 20+ years and my blood tests pretty well always shows higher than 'normal' CRP levels (even VERY high) ..... so much so that my GP was always expecting them to be high & didn't worry about them, until I had a bad reaction to VIOXX (an anti inflam drug) and the markers went thru the roof!!  THEN, she got worried!! 

    Maybe also get your current meds looked at/audited by your pharmacist, to see if there may be a conflict of interest there?   Sometimes, mixing 2 innocent drugs can bring on an unwanted side effect (even over the counter drugs.)   :(  

    Or ...  a request for an MRI (that shows more 'flesh/muscles/organs') might be in order?  And a complete blood test too ... as they'll be looking for ANY thing that is contributing to the enlarged node xx

    take care & all the best ...
  • Mia1965
    Mia1965 Member Posts: 83
    edited September 2023
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    Hi arpie.

    Thank you for your lovely response to my fun filled ongoing existence.  ;)

    So sorry to hear about your arthritis issues, that can be so debilitating at times right?  :'(

    I have had Polymyalgia Rheumatica since October 2006 and the CRP levels get checked quite often. I have had private Rheumy doctors in the past and are now in the same public hospital that saved my life, and I went through cancer treatment in also.

    They consider 80 high on an ANA Titre reading I have been as high as 2560. Although the Rheumy doctor told me you can have high readings with this but be nothing, and having an autoimmune disease can be a coincidence. I found out a very long time ago that the medical field is not an exact science and it is 'hit and miss' at times. Something else that is interesting is that my ANA went down to 1280 at times and for no apparent reason too. Aren't we just the most complex of any species on the planet?  :D

    However during breast cancer treatment my pain level was remarkably low and quite tolerable. The Rheumy doctor at the time told me it would be a 'double edged sword' and he was right. My Oncologist said to me it would be a 'fine balancing act', which it most certainly was too. Only very recently my Rheumy doctor put me on a drug called Pyralin EN 500. I had told the Rheumy doc that I had been having flares again and had gone up on my meds to cope. It was supposed to be 2 per day with 5mg of Prednisone, but in light of my high response to meds she told me to take 1 per day. Unfortunately I passed out on this drug and only lasted 6 days on it. I could not function in the day, especially trying to drive. So again I cannot tolerate anything other than Prednisone. I am currently on 5mg/day. When I first had my disease in 2006 the doc put me on 40mg/day to get the inflammation under control. Thank goodness that is not the case now as that drug isn't good long term. And 30 days is considered long term right?  :D And on high doses having a blood test causes incredible bruising and infections. And having had 3 lymph nodes removed in 2011 means bloods and pressures can only be done on my right arm. Poor thing cops a beating at times.

    I have also tried Methatrexate and Plaquinal which were not successful in any form for me. One gave me extreme nausea the other horrible nightmares bordering on night terrors! The gp told me I would have the disease for 6 month to 6 years in 2007 and now it will be 17 years next month. I just wish that was accurate. He tried Immunoglobulin injections twice but to no avail also. That journey was also quite harrowing, at least when you have a diagnosis you can start to move forward with treatment etc. The gp had me constantly getting blood tests. Testing for anything for LUPUS to Lymes Disease and Ross River Fever as I had extreme pain but also fatigue and brain fog. This PMR is a constant drama for me. A muscle wasting disease for no apparent reason, and it took forever to diagnose initially. My gp told me to call it 'Mia's Disease" lol. Then 2+ years ago I was diagnosed with Coeliac disease via bloods then an Endoscopy last year in August 2022. That isn't pleasant either as dietary limitations is quite a burden along with cross contamination worries and iron deficiency . I have been 'Glutened' on quite a lot of occasions too. Now with the PET they have found Diverticular Disease. Gotta love life right?  :'(
    Gp always said to me to not be surprised if after having one autoimmune disease I don't get another one on top of it, or even more. Wow!!! Just wish winning the lotto was as easy?  :)

    My private Rheumy doctor told me that they were happy for me to be on Prednisone the rest of my life if necessary, but I am not, and hence why I went to the hospital some years ago. There are more drugs I can try and then the Biologicals. They are extremely expensive at around $10 000.00/month. I wouldn't pay that of course as the government does subsidise them. The Rheumy doctor says differently to the gp however so who knows what will eventuate there?

    I did have COVID last November and have been told you can have nodes enlarge with it, and that it can last 43 weeks or so? They really don't know and will continue to monitor me at least so that is good.

    Well I just have to be patient I guess and hope it finally decides to behave itself and I can stop taking Prednisone with my PMR too. To have a normal life would be such a welcome change.

    I also had stress testing done 2 years ago with high cholesterol levels and they found I have a genetic heart condition. Would you even make a movie about me? Lol!!! Another slap in the face. It was picked up going through chemo but I wasn't told at the time. I only found that out when my gp checked my file for me upon asking why testing done then didn't show that. I guess they thought I had enough to worry about at the time but I still feel I should have been told.

    I am also waiting on an appointment for genetic testing. I had it done in 2012 after I had finished my 6 chemo and 29 radiotherapy sessions at the hospital. With my last scare the specialist asked me if I would be interested in another genetic test as they can test more of the genes now than in 2012. I said definitely I would be interested in that. I have filled out the questionnaire already and now just waiting for the appointment. Initial testing found that my Breast Cancer wasn't genetic but there were only 3 genes they could test back then. 

    This continual looking over my shoulder is so stressful at times and I get quite teary and emotional from it. Out of the blue I just burst into tears and feel depressed. Especially when I get a memory or see about someone else's journey similar to mine. I know, I should be thankful that we live in an age where positive treatments are available for most things on a medical basis, but it is still taxing. 

    I have had some people tell me look forward not backwards, and I tell them that when I have a scare I can't do that easily and unless you have been through it you don't know the half of it.

    Now a very dear friend of mine has just been diagnosed with breast cancer and she also has something going on with her thyroid too.  :'(  It brought back so much for me. My poor friend though has already had bowel cancer in 2011 around the time I was going through BC, so this is so unfair. And it has been a year since I lost another dear friend who also had BC same year as me but we did not know each other at the time. It has been a year last month since I lost her after a 4 year battle again only this time it was terminal. This too makes for a very emotional time for me. I am trying to support my friend who is currently going through it by chatting with her when she is up to it. 
    I so admire her as recently they sold their house and are building a new one all while going  through chemo and then onto radiotherapy. I so feel for her and admire her strength. We have to be strong and courageous too even when inside we may feel broken.

    Thank you again for responding to me, I so appreciate the information and support.

    Sending hugs.
    Take care of yourself and stay strong for your journey. XXX




  • arpie
    arpie Member Posts: 7,677
    edited September 2023
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    Holy Moly, @Mia1965 - they could DEFINITELY write a book about you & your health issues (AND a movie!) ..... It definitely sounds like a lot of the issues may be related to the autoimmune bit ... and polymyalgia is a very broad spectrum 'diagnosis' too & not very pleasant either ...  yeah, any type of arthritis is a pain ... literally!
     
    Your Covid could definitely be affecting your nodes - so maybe mention that again to your Onc/Ultrasound person ...... Does your Rheumy guy speak with your Onc re his own diagnosis & treatment of you, so they're both not trying to cover the same areas, twice?  If your health details are on MyGov, your Onc should be able to access your Rheumy guy's notes, i think? 

    It is not unusual to get a heart defect from some sorts of BC chemo .... they don't always tell you that it can happen either :( 

    Yep, Prednisone can be a double edged sword - I was on it for a while before my BC diagnosis ..... and I hated the threat of weakened & broken bones ... so only take it when absolutely necessary & for the shortest time I can get away with.   Mind you ... if they can come up with an effective, non damaging low dose - I can really see it as the drug of the future re AI side effects ...... but the trade off currently (broken bones) is not good.

    Every day we wake up is a good one (vs the alternative) so try & get out there & enjoy every bit of it that you can xx

    take care and all the best for your future checks xx