After watching a late night show of the English TV show, Embarrassing Bodies, where a woman presented to the doctors on the show the exact same conditions on one of her nipples, she was given a diagnosis of Paget's Disease of the nipple, a rare form of breast cancer. Sadly I fell asleep and did not see the final part of this outcome and what was done etc.
So, off I go back to the doctor after trying all the different creams and potions, mention to him about the show I had seen, and he stated that he had considered this possibility, but as he had done an examination of the breast and nipple he didn't think it was, but now, seeing as how the nipple was unchanged and not responding, he felt it best to send me to a dermatologist to have him investigate.
Off I head to see the dermatologist, he pokes and prods and utters those words, I have never seen anything like this before and believe it is not something I can do anything about, I will do a biopsy and send it off for analysis. Ok, so yes, the word biopsy puts the fear of the almighty into you and you walk away worrying about what the outcome is going to be.
Well, on the 28th of November 2012, I get the feared call from my doctor's surgery, Evelyn, please come to the surgery at your earliest convenience for your results. Well, I was at work, and although embarrassing, I naturally fell into a heap and needed the help of a work colleague to drive me to the doctor's surgery, making a phone call to my partner Kerry to get him to hopefully meet me there.
It would have to be the first time I have never had to wait around to go in to see the doctor, I walked in, said my name, and immediately I was ushered into his room.
Then, the words come out of his mouth, I am so sorry Evelyn, but the biopsy has come back positive for Paget's Disease, you have cancer of the nipple area and the possibility of a further cancer inside the breast. At this stage I began to wonder why my yearly Mammogram hadn't detected anything, and the doctor told me in the next breath, that most tumours that present with Paget's are undetectable via Mammograms and ultra sounds.
So, with tears running down my face, he proceeds to tell me the next step, which will be to see a specialist in this area, which didn't take long to get an appointment for. Off I trundle to see the specialist, he sends me off for more mammograms and ultrasounds, back up to his rooms I go after having them done.
Now, one of the worst days of my life unfolds, he proceeds to do punch biopsies, these are done direct into the breast tissue with no anaesthetic and they hurt like a bitch! Oh, did I mention also that prior to seeing the specialist or my GP I had to see another GP due to an infection of the first biopsy!
The specialist/surgeon was not impressed as this now meant I had a staph infection already present in my breast, and he mutters that he wished I had been sent to him initially. Well, bugger me I'm here now, so lets get on with it.
He then tells me that I have to have surgery, the removal of the nipple and areola is to be done, and while there he will also cleanse the site where the staph infection is so that this then doesn't go further into my system.
December 5th 2012, I head to hospital, feeling quite numb really, I haven't had time to process all that is going on, just really going along with what the Man says and wanting it all to be over.
Surgery is complete, I have to now endure the healing of the gaping hole in my breast, so they fit me with a banding system called http://www.possiblewithpico.com/specialty/wound. My stay in hospital is 3 days, the nursing staff are wonderful, under the pump though being so close to Xmas etc.
Had a visit from the Cancer Support lady, and I guess I should be grateful she did come to see me, but honestly couldn't see why she bothered, she had no information on my particular type of cancer (had been given totally the wrong notes on what procedure I was having), so felt she wasn't of any help to me what so ever. The same went for the Physio guy who came to see me, once again misinformed as to what type of surgery I had and didn't have any notion on what I needed or may need.
On my last day in hospital the nurse in charge came to re dress my surgical wound, now, here they inform me that this could hurt, so we will give you some pain killers before we start so that you can be relaxed and hopefully not able to feel too much pain.
OK, so, I take their medication, and wait for them to return, half an hour to almost an hour later they re appear. Off comes this little battery pack pump ensemble, that was ok, no pain there, THEN, off comes the plastic bandage, nope still no big drama there, WELL! the next part was nasty, and hurt (once again) like a bitch! they have to take out the scouring pad that has been pushed into the hole that is in my breast. IT HURT! Clenched fists and deep breathing and the nurses saying they are sorry etc didn't make it feel any less painful, they did not tell me that that wasn't the worst part, the repacking was equally if not worse.
I survived that part, just, off I go home, all has been organised with Silver Chain that I am to have two changes a week for the next 6-8 weeks, bugger!
After having two weeks off after my surgery, I head back to work. I work as a checkout operator for Coles Supermarket, and it is manually hard on the body, but luckily for me my manager had organised for me to be on light duties while I healed.
I see the surgeon after 14 days for a follow up check up and further results of further biopsies done during surgery. This man really needs to work on his sense of humour! He starts off by saying there is good news and there is bad news!
Good news is that we have removed the Paget's disease, bad news is that they did find a second tumour in a milk duct, but (he says luckily) that was where the staph infection was, so they took all of that one out also, however, due to the type of tumour it was, there was no way of actually detecting this through the "normal" ways of testing. No guarantees of it never happening again either.
My Silver Chain nurses are to be commended, they were awesome ladies, one in particular, Sue, she made her visits ones of lots of laughter and as pain free as she could. The hardest part of all of this was the fact that I was unable to get my left breast wet, so I had to use my initiative in ways to shower and not get it wet, a plastic poncho raincoat was my saviour.
After 6 weeks, the hole had reduced significantly and with no infection, yippee! says me. Then Sue gave me some good news, I COULD HAVE A FULL ON SHOWER!! My first shower without my raincoat on was one I will remember also, I stood in the shower for almost half an hour, letting the water run down my back, down my front, tears streaming down my face, I felt liberated! Sue came back for another 3 visits but mainly just to put smaller bandages on and to make sure all was still healing.
Now! The journey from hell begins!
I head off now to see my radiologist/oncologist, he explains to me that I am now to be zapped once a day, five days a week, for five weeks, and that my first appointment will be where they tattoo you with markers and get your measurements for the scanner to be set up each time in the correct manner.
This is not pleasant, you have to have your arms put into stirrups above your head and then they start pushing/pulling marking so that all is right. The first two people I saw where wonderful and made you feel like a human.
Ok, so here we go, remember, I am still working, and for my treatment I have to travel to the oncology rooms (half an hour) then from there back to work (an hour) or sometimes the other way, from work, then home, the treatment itself should only take about 10-15 minutes (less if possible).
My partner and I turn up for the very first zapping appointment, time made for this appointment was 5:15pm. We sit down in waiting room as instructed, there are a couple of other patients waiting, and one comes in after me. Some of the others were informed (personally) that there was some delay due to maintenance on one of the machines. One of the patients (who came in after me) went home to have his dinner and said he would return in about 45 minutes, which he did. Meanwhile, we are still sitting there, no one informed us of what was going on, we are overhearing everything around us. We are then shown to another waiting room along with the patient who went off to have his dinner and who came back. A staff member then came out to let us both know that they were having a few other issues with the one remaining machine and that it could take approximately 15 minutes to fix (time now was 7:30pm), we decided to stay and wait for our turn. The other patient was then taken in for his treatment, but a short time after came back out with the technician who was keeping us informed of progress on the machines, and we were then informed that there was nothing more they could do that day, but this machine was now not operating either, so could we please come back tomorrow.
I was livid! It was now 8pm, we had not had anything to eat, no one showed us any courtesy by telling us initially of lateness or asked us if we would like to pop out and get something to eat, bloody hell, there was a take away restaurant directly across the road from us. Ok, so maybe I should have gotten up and asked, but I think I was shellshocked that I was there in the first place, so never even gave it a thought. So, on our drive home I was so angry that I was determined not to go ahead with any radiation treatment at all, especially as they could only give me a 50/50 chance of non occurrence of the cancer!
We arrived home at almost 8:30pm, emotionally drained too tired to even bother with food, couldn't eat if we tried. I vented my feelings on my Facebook page, and got the shock of my life when all my friends and family told me to get my arse back there tomorrow, 50/50 chance is better than none they kept saying.
So, the process began again, drive there, wait in the room in a gown that doesn't cover you properly, wait to be called in. Lay down, arms in stirrups and more poking and pushing, this time I felt like a large lump of meat, and you could have cut the air with a knife, I was too tense to even be pleasant to these people, and so that is how it progressed. I didn't want to be there, some days there were more delays, asked them if they could possibly send me a message if there was a long delay, then I didn't have to rush to get there etc etc. All too bloody hard!
Half way through treatment I have to see radiologist/oncologist, I tore strips off him, told him in no uncertain manner that the Care in their name should be taken out, as it was sadly lacking in their treatment (well to me anyway). He took it on board and hoped I had no further delays.
Advised me also that there was always a nurse around if I needed any help etc. HELP! I just wanted it over with. Remember, I am still working, so I have to get dressed every day, yes I am wearing a bra, even bought one that was most uncomfortable to me, but didn't put too much pressure on the skin where I was being zapped, there were days that I would sit in the staff room and burst into tears and then collapse from fatigue, so tired I was.
Oh and I would 9/10 times cry on my way home from each session, feeling so lost and alone, and wondering why me?
I see the nurse for the first time, she helps me with some ideas of how to ease the burning sensation of my skin, the salt towels felt wonderful to my skin, then there was the gooey lotion to help stop the skin from cracking/drying. Ok, I thought that was useful, and went home and did all she had told me to do.
My last zapping comes along, must see nurse after this session, she checks the skin around my breast area, and notices that the "nipple" area is breaking down already (skin peeling off) so she gives me a big brown paper bag with a handful of (what I called) sanitary napkins a small burns bandage and a small amount of soya gel, and sends me on my way, oh, and explains to me that I may get some further breaking down of skin, but because I had already had too much I shouldn't get much from here on in. YEAH RIGHT!!
Ten days after my last zap, I come home from work, do my usual stuff when I walk through the door, kiss the man hello, kick off the shoes, head to the bedroom, and off comes the bra. OUCH! The skin around my armpit and the top of my breast and under my breast are now red raw and hurting like hell, show Kerry and he is beside himself, packs me up and we head off to the hospital. the ER doctor and nurse are unsure of how to treat a radiation burn! WTF! So the doctor in charge tries ringing my oncologist (time is 8:30pm) no response, she then tries all the local hospitals with no joy, then rings a hospital in the city, and the person she spoke to there gave her some ideas on how to treat them. Ok, so we stick another type of burns patch on my wounds, while the staff are doing this the oncologist calls them, told them to tell me to call them at the centre in the morning. Now, I am a fairly large breasted woman, and have been able to wear my bra throughout all of this, but now, no way, it is just way too painful. So decide to just see what it's like in the morning.
Wake up, look down, and not happy with what I see, the burns are ugly red/pussy looking messes, no way will I be able to go to work today, make arrangements to have more time off. Ring stupid "Care" centre, nurse said that I should have a bag full of proper burns bandages, NO I DON'T I inform her. She now wants me to drive up to see her, NOT going to happen I once again inform her, partner unable to have time off, I am NOT going to attempt to drive with no bra on or in this much pain. Really wanted to tell her to stick it up where the sun don't shine!
The next five days I sit around the house topless, bathing my wounds with salt towels and using paw paw cream to help in the healing, my partner and I were totally gobsmacked at the lack of information/help that was available out there in the internet world. There were hundreds of people with the same problem though, but no satisfactory resolutions. Very frustrating.
Well, one did heal eventually, physically anyway, so I returned to work and carried on. I allowed a few months to pass and then sat down and wrote a letter to the "Care" Centre that I had attended and informed them of my feelings about the lack of empathy and poor treatment given during and after zapping . I received a two page response, and they informed me that some of the suggestions I put forward where on the agenda to be implemented in further patient care. I guess something good has come out of my anguish.
Now it is 9 months after my surgery and radiation, another problem has arisen. Pain under my arm, on the top of my breast, along my rib cage, like muscle soreness and sharp stabbing pains into my rib cage and breast bone area. After seeing my GP and having another ultrasound, which showed nothing sinister. He could give me no answers as to how to help this area heal/repair, ease the pain. I have taken the matter into my own hands, or should I say into the hands of an Occupational Therapist, who does deep tissue/muscle massage, and also seeing my osteopath, they are helping, but I guess I have to give it further time before fully repaired. Once again, FRUSTRATING!
After all this time, you would think that a plan would be in place for people who are in a similar position as I am, I can't be the only one who has suffered these problems, so why then hasn't someone tried to put something in place to help people in our situation. As my partner said, he had a hip replacement, and he had 6 weeks of physio allotted to him to make sure the muscle around his hip returned to "normal", why then can't they do it for other surgery also, especially breast surgery?
I want to also take this opportunity in thanking my wonderful partner, my daughters, my work colleagues and my Facebook "family", for without their support, in one way or another, I don't think I could have kept my sanity as well as I did.
THANK YOU!
I still have to see my specialist/surgeon in December, and then the oncologist again in June next year, like most people who have breast cancer, until we get the five year all clear, the shadow hangs over us.
To all those who may read this and especially those with cancer, hang in there, remember to cry, but above all, remember to laugh!
Thank you.
Evelyn
21st of March 2015
OMG! Can't believe it! Here I go again! Went and had my 2nd year follow up mammogram on Friday the 6th of March, not too concerned about it, hadn't noticed any changes myself. Go to my GP on Monday the 9th to get results of other tests I had requested while on holiday (blood tests for you know, the usual, cholesterol, glucose, thyroid, blah blah blah), not feeling overly concerned at all when I walked into his room. THEN, he says, I have just received your results from your mammogram, and it isn't good. WTF! yep, I swore at him, wasn't very lady like at all, but he proceeded to tell me what the report had found and what needed to be done next.
Ok, I am diagnosed with a malignant spiculated mass in the left breast (yep the same one as the Pagets) and now need to have a core biopsy and ultrasound done. Appointments are made hastily due to the words at the bottom of the report "Urgent surgical opinion is recommended".
So, on the last day of my annual leave week, my partner and I trundle off for the biopsies to be done, the time of the appointment confirmed, be there by 2:45 pm, 3:30 pm passes and still waiting, 3:45 pm comes, waiting room empty except one older couple, and we find out that they are waiting on someone who is already in the rooms. So, I ask whether we have been forgotten at reception, the woman goes off to see the radiologist/nurse, who then comes out and informs us that there has been a delay, and could be another 20 minutes, if you would like to go for a drink or something to eat please do so. Ok, so off we go for a bit of a walk, Kerry off to have several cigarettes, we have a drink and something small to eat then head back. Hmm this waiting game sucks! At approximately 4:20 pm we are finally called in, poor Kerry isn't able to come any further with me so he stays in the waiting room and watches tv. I robe up, go into the ultrasound room, and so it begins, the pushing the poking, pictures saved. Then they ask me if I would mind them using their newly installed 3D ultrasound, due to my unusual surgery/cancer from 2012. Why not I said, a few more hours isn't going to hurt! That done, the doctor comes in and jabs me with some anaesthetic to numb the area that she is going to push the biopsy needles into. NINE needles later, and a few tears shed, I am able to clean myself up and dress and head on home. Now the waiting game begins, it takes approximately a week for tests to be done on biopsies, appointment with surgeon is on the 23 rd of March. The women who were with me in the ultrasound room (there were 5 of them all up) were lovely, and the one nice? outcome of this time was that they bulk billed me (was going to cost me $500+ for the appointment initially) but due to the lateness of my going in etc they waived it. How nice of them.
Well, will update more when I know more.
OMG! Can't believe it! Here I go again! Went and had my 2nd year follow up mammogram on Friday the 6th of March, not too concerned about it, hadn't noticed any changes myself. Go to my GP on Monday the 9th to get results of other tests I had requested while on holiday (blood tests for you know, the usual, cholesterol, glucose, thyroid, blah blah blah), not feeling overly concerned at all when I walked into his room. THEN, he says, I have just received your results from your mammogram, and it isn't good. WTF! yep, I swore at him, wasn't very lady like at all, but he proceeded to tell me what the report had found and what needed to be done next.
Ok, I am diagnosed with a malignant spiculated mass in the left breast (yep the same one as the Pagets) and now need to have a core biopsy and ultrasound done. Appointments are made hastily due to the words at the bottom of the report "Urgent surgical opinion is recommended".
So, on the last day of my annual leave week, my partner and I trundle off for the biopsies to be done, the time of the appointment confirmed, be there by 2:45 pm, 3:30 pm passes and still waiting, 3:45 pm comes, waiting room empty except one older couple, and we find out that they are waiting on someone who is already in the rooms. So, I ask whether we have been forgotten at reception, the woman goes off to see the radiologist/nurse, who then comes out and informs us that there has been a delay, and could be another 20 minutes, if you would like to go for a drink or something to eat please do so. Ok, so off we go for a bit of a walk, Kerry off to have several cigarettes, we have a drink and something small to eat then head back. Hmm this waiting game sucks! At approximately 4:20 pm we are finally called in, poor Kerry isn't able to come any further with me so he stays in the waiting room and watches tv. I robe up, go into the ultrasound room, and so it begins, the pushing the poking, pictures saved. Then they ask me if I would mind them using their newly installed 3D ultrasound, due to my unusual surgery/cancer from 2012. Why not I said, a few more hours isn't going to hurt! That done, the doctor comes in and jabs me with some anaesthetic to numb the area that she is going to push the biopsy needles into. NINE needles later, and a few tears shed, I am able to clean myself up and dress and head on home. Now the waiting game begins, it takes approximately a week for tests to be done on biopsies, appointment with surgeon is on the 23 rd of March. The women who were with me in the ultrasound room (there were 5 of them all up) were lovely, and the one nice? outcome of this time was that they bulk billed me (was going to cost me $500+ for the appointment initially) but due to the lateness of my going in etc they waived it. How nice of them.
Well, will update more when I know more.
