Still Alive to Complain – Priya’s Breast Cancer Journey update
Back in 2020 my sister, Priya, wrote a blog post about her breast cancer diagnosis and treatment at age 40.
We thought it was time she did an update for you all about ongoing life following a cancer diagnosis, going over the ups and downs, especially as we are in October 2025 which is Breast Cancer Awareness Month.
Priya in her own words - 7 years later
7 YEARS
Like the post says
Still Alive To Complain
Hello, it's Priya here.
If you can't remember my original post here on my sister's blog, this was written October 2020 so I wanted to update it a little.
This is a summary of the original blog post from 2020:
- July 2018 - my cancer was diagnosed (same month I turned 40).
- August 2018 - I had my mastectomy.
- September 2018 - I started tamoxifen and hence an early chemical menopause.
- October 2018 - I had my radiotherapy.
The original post has all the full details about how I was diagnosed and what happened immediately after that. That was in 2018.
There are so many people who forget that I had a breast cancer diagnosis, or a mastectomy (I chose to not have reconstructive surgery). In some ways this is good, as I'm not treated differently.
However, they don't realise that you live with ongoing issues following any cancer surgery or treatment and this affects you day to day in so many ways.
You don't go back to being the 'old you'. What you do get is to become this 'new you'.
But what does that mean?
Cancer, NHS and me
The NHS is one of the best things about this country, even since the pandemic despite it being under so much pressure.
Yes, it's not perfect at times but from my experiences it really has been the best thing. I could not have been able to afford to do this all without the NHS and the fabulous people who work within it.
Timeline of events
Here is a rough timeline of what I've been managing since 2019 after the surgery and radiotherapy healed.
As an outline, I'm on the medication Tamoxifen and will be for the forseeable future. I began taking this in 2018 when I was age 40. The forced chemical menopause that comes from Tamoxifen is no joke, as the symptoms that are normally gradual and less intense in one go are just put on you straight away. The mental/brain effects and the physical effects are so pronounced and change constantly, it really hit me hard and continues to do so in other ways.
April 2019 - My first visit back to my NHS medical team was when I had so much pain in my chest. So much so that I thought I had bone cancer and that's what the pain was. But the consultant checked me over immediately and told me it’s from the after-effects of my radiotherapy as it was targeted by my chest wall/ribs. The radiotherapy burns tissues, including ligaments and muscles. That's also the side of my mastectomy where again, muscles and ligaments and other tissues are cut. This does lead to mobility issues with the affected side/arm and includes pain.
August 2019 - The next time I contacted the medical team was when my veins in my left arm had collapsed randomly, which is crazy painful. I thought the lump in my arm was due to a new cancer, but they assured me it wasn't. Again, they saw me immediately and it did go down eventually. Again, possibly due to the radiotherapy and surgery.
Sept 2019 - I started counselling. I don't know why more people don't do this and in many ways I wish I had begun it sooner. It gave me the tools to help myself in ways that I would never have found on my own.
May - August 2020 - during the first lockdown when it was impossible to see people. I felt pain I have never ever in my life experienced before. 24 hours a day, 7 days a week. It took my pharmacy knowledge to figure it out (University money well spent). My absolutely amazing GP, and the best consultant/surgeon and oncologist all took me seriously the moment I told them. All saw me within 3 days.
The problem it turns out is that only one Tamoxifen manufacturer suited me!! The other ones caused more side effects and I had been dispensed Tamoxifen made by a different manufacturer to the one I'd previously been taking.
Apparently, this can happen. The side effects are unbearable. Many women stop the medication because they cannot manage with them. Going back to the one that suited me helped things, but this isn't something a lot of women are told when they take Tamoxifen and have issues.
August 2020 - for one year I had a pelvic ultrasound scan every 3 months, with an internal exam and eventually a womb biopsy under a hysteroscopy to find out why I have random menstrual bleeding.
Apparently, this can also happen when on tamoxifen, but it is taken very seriously as cancers tend to creep in. Most people think that once on tamoxifen your periods stop fully, I know that’s what I believed.
November/December 2023 - Then, by the end of 2023, I started to have immense pain in my hips. They felt like they clicked out of place and I couldn't cross my legs, or lie on my side. A doctor told me from my x-rays to expect a hip replacement in 10 years!!
My physiotherapist, on the other hand, said what I had was a normal hip socket, but the ball was not round and smooth, hence the rickety feeling and pain. Anyway, after several months of physiotherapy, I felt better. Again, not bone cancer in my hips which was a first thought!
August 2024 - For over a month, my hips started hurting again and I felt like I had sciatica. The same sort of signs and symptoms as my mum and sister who both have sciatica.
My husband (who is a GP) thought it was time for me to contact my breast nurse (For cancer patients when there is something oddly wrong they are who you contact first) as this was ongoing from 2023.
So I did get in touch with them, then my oncologist called me in. We chatted and decided that I should have a CT scan.
Now, this is where it got scary……
They saw 'something' on my spine on the scan so then they wanted me to have a full body MRI to rule anything concerning out. Terrified, I did this, and they said it wasn't cancer. Phew!
They did a repeat full body MRI 7 months later.
I genuinely thought a cancer had come back. It was a very difficult few weeks.
Every single time something happens or I feel pain, a part of me wanted to ignore it.
Then I look at my kids and remember why I try.
Every appointment, every test, were so scary to have.
But the hardest was the waiting.
Waiting for tests.
Waiting for results.
Our thoughts can go into a very dark place.
'Scanxiety' is a real thing, and until you have experienced it over and over again people just can't understand it.
But it’s better to know these things sooner and to face things.
Life Now
Life 7 years on is great. I'm cancer free.
The side effects from my tamoxifen and the assoicated menopause can make me want to hide under the duvet some mornings. But I have to keep remembering why I'm taking it.
My cancer responds to and grows with oestrogen, and the tamoxifen blocks my body using the oestrogen my body makes.
At 40, I started my induced menopause due to my tamoxifen. Which cannot be eased by medication, supplements or diet.
And now we believe on top of my induced menopause I am going through my natural perimenopause.
What fun!!
And I also want to say that cancer hasn't only affected me, but it's affected my whole family - especially my children.
They were only aged 9 and 6 when I was first diagnosed, which was only 1 year after their grandfather (my dad) had died from a brain tumour.
I searched out therapy for them and talked to them about everything and got involved.
They're now 16 and 13 and truly understand what it meant for me to have had breast cancer, and why I feel the way I do most days.
My daughter saw that I was losing so much hair on my head due to the tamoxifen induced menopause (I've lost at least 50% of my hair but you can't really tell by looking), and she knew that it upset me.
So in 2022 just before she turned 13 my daughter cut off 13 inches off her gorgeous long hair and donated it to the Little Princess Trust charity. This charity is reliant on donations to keep making and sending wigs to children for free. She also raised £906 on the JustGiving page.
Then this year, my daughter had her GCSE exams and she did Design Technology. Part of her exam was a big project, that included students to use creativity and imagination to design and make prototypes and solve real and relevant problems considering their own and other's needs, wants and values. So they found a problem people may have, worked through options of how they could design something that helps, done research on this, worked through making prototype designs, making the actual prototype and critically evaluating it. Many students chose to do things like furniture etc.
My daughter started like that too, then realised it didn't grab her imagination and she looked at me and my sister and said do you think I could do a sports bra for people who have had a mastectomy?
She got this idea because she knows what it's like for me. My ribs, shoulder and chest hurt, I can't always lift my arm up high or draw it back behind me and as I didn't have reconstructive surgery I use a prosthesis inside special bras but these aren't always stable.
The change in her was astounding, she was focused and determined and and so much motivation. Her final piece was incredible and she got a whopping 95% mark for it.
I want to re-emphasise that without our NHS, I would not be here right now.
My Dad would not have died the way he wanted, at home with the kids. My eldest sister, grandmother, mum, and so many more have been helped by this NHS.
Maybe that's why many of us in our family have ended up working for the NHS or in ways that help people and their health
Please check yourselves.
Breasts, prostate, anywhere.
Learn what YOUR normal is so you have a chance to notice if something is wrong.
I was lucky.
I get to live.
I currently still have no intention to have reconstruction surgery.
My husband and my kids, my mum and siblings have been exceptional in getting me to where I am.
Please check for lumps, bumps, anything out of your normal.
For over 5 years I have been posting on various sites and have had many dozens of people reach out for help or advice. If you have questions, please ask me and I will see if it's something I can help with. A lived experience may help you too, I know other people really helped me.
I haven't posted all of this for sympathy, but more to be real and explain what life is really like. And also to raise awareness, as we all know that early detection of cancers makes all the difference to the prognosis.
Information
If you are concerned and need further help then the following are great starting points.
All content within Calm and Clear Complementary Therapies is provided for general information only, and should not be treated as a substitute for the medical advice of your own doctor or any other health care professional. Calm and Clear Complementary Therapies and Rima Shah are not responsible or liable for any diagnosis made by a user based on the content of the Calm and Clear Complementary Therapies website or blog. Calm and Clear Complementary Therapies is not liable for the contents of any external internet sites listed, nor does it endorse any commercial product or service mentioned or advised on any of the sites. for more information. Always consult your own GP if you’re in any way concerned about your health.