I had a routine mammogram 2.5 weeks ago where a lump was found. Since this, I have been diagnosed with grade 3 breast cancer (the fastest growing breast cancer). I‘m waiting to hear when I will be going in for surgery to have the mass removed. I’m sharing my journey with you for a couple of reasons: As a coping mechanism (put my thoughts down, get my head around it all) and to share my experience in the hope it may just help someone else going through breast cancer.
***WARNING*** This blog is a live journey blog, I will be updating and adding information as & when it happens. This means you will read how I’m feeling at that moment, the treatments I am having and even a few swear words. No offence is meant but if you are easily offended, this may not be something you wish to continue reading. If you do wish to keep up-to-date, then you may want to bookmark this page.
I went for a mammogram on 25th August 2021 at Teddington Hospital. I didn’t think too much of it, had plenty before, nothing really to it. The lady who performed my mammogram (mammographer) thought at first I may not be able to have my mammogram as I am a full-time wheelchair user and unable to stand and she has had cases before where it can not be performed. I assured her all would be fine as I have had them done before from my wheelchair, the fact my armrest can be removed and I am quite mobile/manoeuvrable. She seemed pleasantly surprised at how easy it was to do.
The following week, I received a letter informing me a mass had been found and I would need to have this investigated further in the form of some scans. This included an appointment for the breast clinic at St. Georges Hospital on Monday 6th of September 2021. At this point, I wasn’t overly concerned as I had had lumps found before and even a biopsy of one of them. All thankfully turned out to be just fatty lumps.
My Scans & Biopsy
I met with a wonderfully warm team at the St. Georges breast clinic. I had another more in-depth mammogram (3D I think) and an ultra-sound scan on both breasts. After the scans, it was decided a biopsy would be needed of my right breast where the mass had formed.
For my ultrasound scans, I hopped onto the hospital bed, lay on my left side (as it is my right breast the lump was found) and some lovely cold jellified liquid was spread onto my breast and a handheld device then moved across my breast so the consultant could see what was happening on the monitor in front of her. https://www.cancerresearchuk.org/about-cancer/breast-cancer/getting-diagnosed/tests-diagnose/breast-ultrasound
After I had my scans. I stayed on the bed so the Dr could perform the biopsy. The nurse that was with me chatted the whole time keeping me occupied. The Dr/consultant took a needle biopsy of the mass so it could be tested to check for cancer cells. You are numbed first and I didn’t feel thing. https://www.cancerresearchuk.org/about-cancer/breast-cancer/getting-diagnosed/tests-diagnose/needle-biopsy
After all the procedures had been done, we sat with the consultant who said she was concerned with what she could see so far but obviously until the results come back nothing could be confirmed. The biopsy results would be in the following week. I explained we were away visiting family the following week so it was agreed we would have an appointment for the Monday after we returned.
We were offered a cup of tea and left alone for a few moments (to allow us to gather our thoughts). I’m not ashamed to say both my husband and I had a little cry.
My Biopsy Results
We arrived back at st. George’s Hospital feeling quite positive as we had resigned ourselves to the fact it was going to be cancer. If it was cancer, we knew it could be dealt with as it is caught early, small and contained and thankfully (so far) none in my lymph nodes.
We were greeted again by the same wonderful breast cancer nurse who took us to a room to meet with a different consultant. (My IBS was at an all-time high, I felt hot and sweaty, a little shaky karma and very light-headed). I knew I was going to not be able to take all the information in today. Thankfully my husband was with me.
The consultant indeed confirmed it….I had breast cancer. I was told it was grade 3. As much as I was prepared for the news, it still came as a shock, especially the fact it was grade 3.
A lot of people get grades and stages of cancer mixed up. I was told:
Breast cancers are given a grade according to:
- How different the cancer cells are to normal breast cells
- How quickly they are growing
The grade of a cancer is different to the cancer stage.
A cancer’s grade is determined when a doctor (pathologist) looks at the cancer cells under a microscope, using tissue from a biopsy or after breast cancer surgery.
Source: Breast Cancer Now Org: https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/cancer-grade
The stage of a cancer describes the size of the cancer and how far it has spread.
Your breast cancer may be described as stage 1, stage 2, stage 3 or stage 4.
An early form of breast cancer called DCIS is sometimes referred to as stage 0 breast cancer.
The stage takes into account:
- The size of the cancer
- Whether the lymph nodes are affected
- If the cancer has spread to other parts of the body
The stage of your cancer may not be fully known until after you have had surgery.
Source: Breast Cancer Now Org: https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/cancer-grade
He went on to tell me that my type of cancer is the most common of breast cancer which he said was obviously a good thing. They explained it should be easy to treat as the mass is small and contained. It was confirmed that no cancer could be seen in my lymph nodes but I will have a few removed during surgery to be examined under a microscope to make sure.
My type of cancer is oestrogen fed, meaning my oestrogen must be lowered once the mass/lump has been removed as a preventative measure to make sure all precautions are taken to prevent cancer from returning. I was told to expect an appointment within 2 weeks to see a surgeon at my local hospital (Wet Mid).
The following day (Tuesday), I received a telephone call from West Mid hospital offering me an appointment for the following day. I was extremely surprised to receive an appointment so quickly, in reality, I had expected to receive one the following week. of course, I accepted the appointment and was happy that things seemed to be moving along very quickly. The downside of this though is that you don’t get much time to take everything in and digest what information you have already received.
I arrived at West Mid feeling extremely anxious and was also worried my IBS would kick off and cause me to keep rushing to the toilet. My appointment was at 10 a.m. and we got seen at approximately 11 a.m. This did not help my anxiety!
My first impression of the Dr. I saw, put aside the fact she explained everything to me that had already been explained to me twice. (I understand that has to happen). It was the fact that she seemed to dither about my disability. The fact I could not raise my arm above chest level.
(When you have to have radiotherapy on your breast you have to keep your arm above your head to allow the x-ray machine access). Of course, this makes total sense but due to my disability, I’m unable to do this. Surely, I’m not the first person needing radiotherapy who can not elevate their arm by themselves, am I?
Every effort was made to alleviate the doctor’s concerns. I explained that we would find a solution one way or another. But again she seemed to just dilly-dally and be unsure of how to proceed. This made me feel even more anxious. What if it’s decided I can’t have this treatment because of the fact I can’t raise my arm above my head by myself? Any alternatives? If there are, the doctor didn’t say.
St George’s Hospital came across very confident, positive, knowledgeable. This made me feel extremely at ease about everything I was going through and going to go through. My first experience of West Mid Hospital actually made me feel the opposite. I came away feeling more anxious that certain treatments may not go ahead. I’m unsure how my treatment will now proceed. Something St. Georges seemed quite confident about. I don’t know if I wish to continue being treated by West Mid. I have had one or two bad experiences there.
What made matters worse was the fact the doctor turned around and told me they were not even expecting me? How on earth did that happen? It’s now been left that I am to expect a phone call next Tuesday. I assume this is to give me another appointment to see the doctor/surgeon again. The Dr. explained they have their “meetings” on a Tuesday to discuss cases!
Those that don’t know, I had a heart attack 5 years ago next month. (A blog I have been trying to write for the past 2 years but for whatever reason, I keep procrastinating over it). The doctor is naturally concerned that my heart is looked after throughout my treatments especially if I need to have chemotherapy as this weakens the heart muscles.
I’m awaiting an appointment to have an ECG test and more scans on my breasts. I’m hoping the phone call I hope to receive on Tuesday will let me know more about this.
In all fairness, I have a lot going on with my body right now. This includes IBS, anxiety, heart failure and cancer! So I am extremely worried about how all of this will affect my different ailments. This has not yet been discussed in full with me so I have no real knowledge at present of what any of this will do to me!
My anxiety causes my IBS to flare up. This then makes me need to keep going to the toilet, which is not ideal as hospital appointment times are just not geared for people with these types of issues.
When I’m in an appointment feeling extremely hot, shaky, dizzy and needing to rush to the toilet, there is no way I can dedicate myself to asking questions or finding out how treatments will affect me etc etc. I have no idea right now how to deal with this.
Only time will tell how things will pan out. I will add more once I have spoken with the hospital on Tuesday.
Tuesday 14-9-21 – I received an email last night with an online appointment. This appointment is for an echocardiogram today. The Dr’s need to know if my heart is strong enough for surgery and any treatment needed afterwards. Fingers crossed it all goes well. My stomach’s churning already. I really do hope my IBS stays away. It’s not like I can leave mid scan to rush to the toilet.
OMG, OMG, OMG. I have just received a phone call letting me know I’m booked in for surgery on 23rd Sept 21. That’s next week! Yes, I know things need to move swiftly and I am glad of that. But I feel I haven’t had time to breathe, let alone take all the information in.
I am so damn confused right now. I’m booked in to have an echocardiogram today, this is to check my heart is strong enough for surgery yet here I am already booked in for surgery? I have no idea how long it will take for results to come back from the echocardiogram and what if it’s not good news?
Will my surgery be cancelled? Are there things they can do to help me through surgery? I’m sure I’m not the first person to have surgery with a heart condition. Am I warranted in my concerns?
I have so many questions and so far I’ve had no second appointment as promised to see the doctor again to be able to ask these questions. No chance of my IBS staying away now!!
Tuesday 14/9/21 – My Mistake
Can you believe it! I only miss-read the bloody letter, I can’t believe I was so stupid to read the letter incorrectly, my echocardiogram was for next month? This was only found out when I arrived at the hospital and tried to check-in at reception. Thankfully long story short, I explained my echo was needed “before” my operation which is booked for next week, the receptionist said she would speak with cardiology to see what was happening. I was told my Echo would be done today. Phew, what a relief!
It turned out to be a happy accident and a bit of a haphazard day, I ended up going from one department to another, to another. In a nutshell, they done my echocardiogram but also wanted to go ahead with a contrast scan. This meant injecting some dye into my heart. Guess what? Because I didn’t want to set off my IBS, I didn’t drink very much before arriving at the hospital. Therefore this meant my veins were very deep and hiding!
No Veins Today
A doctor came to canulate me (put a thin tube into my vein). She struggled to find a vein but then believed she had cannulated me. When they started to inject me with saline fluid, the pain was terrible. I claimed the canular was not in my vein but the Dr. claimed adamantly that it was. They continued to then inject the dye….I told them to stop as the pain was getting much worse.
(Now I would never tell a doctor or nurse how to do their job but I have had over 30 operations. This means I’ve had enough injections to know if my vein has been missed or not). When they finally stopped injecting me. I sat up and seen my arm was very swollen because the liquid had not gone into my vein but had settled under my skin, I had no choice but to say, “I told you it wasn’t in my vein”! The Dr. left the room rather disgusted (probably with me lol).
It was agreed that the echocardiogram team would speak with a cardiologist to find out if what scans they had taken already that day of my heart were enough. If not, this would mean they would have to try again to find a vein to be able to inject the dye.
As I was in the Echo room having my veins prodded, pricked and stabbed. I had a phone call regarding an appointment to see another surgeon. My husband answered the phone (obviously) and explained that I was actually at the hospital at that moment. The lady explained she would get me in to see the surgeon after my echocardiogram. This would prevent me from having to come back again to the hospital.
I was delighted and relieved that everything seem to be happening on the same day. No need to keep coming back. When I was in with the surgeon, he asked me what I knew already about my condition. everything I told him he agreed was pretty much up to speed.
He was a little concerned regarding the date I had been given for my surgery. There was some confusion as to whether or not this appointment was for my pre-op. I explained I was told over the phone it was for my surgery and that I must arrive at 7:30 am.
He believed this was not enough time to allow for the other appointments I needed to have before surgery. Which included my pre-op, risk assessment and Covid test. The risk assessment appointment would be with an anaesthetist. This is to assess what medication etc I can be given and how best to put me to sleep. He believed the 29th of September would be more of a realistic date.
The surgeon had a look at my previous ultrasound scans of my breast and said I didn’t need any more. This was a relief as I now wouldn’t have to get on/off another hospital bed.
While waiting to see the surgeon, I was told it had been decided the imaging department would have a go at finding a vein. They would use ultrasound to help find a vein. I, therefore, had to drink plenty of water to hydrate myself in the hope this would open up my veins. (Oh boy, here we go again!).
At long last, a vein had been found and I had been successfully cannulated! We made our way back to cardiology to have another go at injecting my heart with dye. I have no idea as to what happened but the tube had somehow come out of my vein, so once again while injecting me with dye and saline fluid it was extremely painful as it was not going into my vein.
Giving up now seemed the only option, much to the relief of my arms. They are in a lot of pain and now expecting some lovely bruises. It has been left that if more scans are needed they will get in touch with me.
I am now waiting for my risk assessment and pre-op appointment to come through. I have a telephone appointment on Thursday, maybe I will know more then.
I received an email appointment for my surgery. It has been put back to the 6th October 2021. Fingers crossed this doesn’t end up being changed again.
Thursday 16/9/21 – 1st Of My Pre-op Assessments
Today is the day of my telephone pre-op assessment. It went ok except for the fact I am a full-time wheelchair user has never been noted on my files, as the nurse asked me, “if you stand, walk or climb stairs do you get out of breath”? I feel the fact I am a full-time wheelchair user who is unable to stand or walk, is rather important information that should be noted down on my records.
Friday 17/9/21 – Implant Removal
Yet again another appointment. This time it’s to have my contraceptive implant removed. The surgeon explained I must have it removed as this releases oestrogen into my system, which obviously is not a good thing as my type of cancer is oestrogen positive.
My GP seemed a little confused as she said my implant doesn’t release oestrogen but only progesterone. All the same, it is being removed. I have to say, previous concerns about the implant being slightly buried, was wonderfully alleviated when my GP managed to remove the implant seemingly within moments. (I wouldn’t have anyone else insert/remove my implant, she is the best).
Saturday 18/9/21 – 2nd Of My Pre-op Assessments
Today I had to be at the hospital at 9:15 a.m.. (no rest for the wicked). Unfortunately, I was not forewarned that I would be having a blood test. Therefore my usual routine of not eating or drinking before an appointment ruined all chances of blood been taken from any one of my veins! Something I am extremely pissed off about.
I did say to the nurse that it would be helpful if a note was included to inform patients if a blood test is required, so we may hydrate ourselves. I mean, it’s not like I haven’t been pricked, prodded, bruised enough that I have to go through another failed attempt to take blood! My arms still hurt from the Echocardiogram attempts.
I am due to have my bloods done next Tuesday at my GP, so the pre-op guys may look to use those results……Here’s hoping!
I am both physically and mentally exhausted right now!! Things move so quickly, you don’t really get time I’m to digest all the information that’s been given to you and believe me it is a hell of a lot of information you have to digest! You’re given booklets, leaflets, letters to read through all about your breast cancer, day of surgery, appointments that have been made for you, the list just goes on. Don’t get me wrong, things have to move quickly considering the nature of my illness but boy does it drain you!
One word of advice and I’m sure most of you will have already thought about this. If you are going through something of a similar nature or any serious illness, don’t make any serious, life-changing decisions. No matter how well you think you are coping, it is not the time to be making any kind of major decisions!
I would love to recommend a Facebook Group that was a great support group with plenty of advice but unfortunately, I can’t do that. I attempted to join one group. They asked a lot of questions about where I was being treated, what kind of cancer I have along with many other questions. I answered them, then had a convo via messenger with an admin. I was told I would be added to the group later that day or the following day. Never happened!
Almost a week later and I was still waiting. Yes, I could have chased them up but in all fairness, why should I? I’ve just been diagnosed with cancer, my mind is racing, I am attending appointment after appointment. The last thing I want to be doing is chasing up some group admin on Facebook. If answering their barrage of questions and having a conversation with an admin is not enough, then screw it!! Unfortunately, other groups of the same nature seem to want to know your whole story also, so I didn’t bother.
Macmillan Cancer Support – https://www.macmillan.org.uk/
Cancer Research UK – https://www.cancerresearchuk.org/
Breast Cancer Now Org – https://breastcancernow.org/