Breast Cancer and Breastfeeding

Living with cancer

My guest blog for Future Dreams written in Early 2021, before my current Stage 4 diagnosis.

In this guest blog, Kathryn talks about breastfeeding and a cancer diagnosis.

ONE YEAR AGO

One year ago today (as I write this) I breastfed Grace for the last time.  One year ago today I was told I had cancer.   

I remember it so vividly, the first thing I said when I was told it was cancer was “but I’m breastfeeding“; the consultant was quick to reply that breastfeeding doesn’t prevent cancer just lowers the risk of certain types, and though rare to get it whilst breastfeeding, it can happen. It turned out that the type of cancer I had was triple negative so no hormone involvement, breastfeeding would have made no difference to the risk.    

I had to stop breastfeeding immediately in case I needed an urgent operation as we didn’t yet know my full diagnosis. I decided I’d do one last feed to sleep that night.  I’ll never forget how I sat on my daughter’s bedroom floor, holding her, breathing her in as she fed for the last time, tears streaming down my face at being forced into this position.  Sadness encompassed my whole being as I felt I was letting her down and things were about to change so much for her, for all of us, I was fearful of what 2020 held.   

BREASTFEEDING GRACE

I am proud to have breastfed and to have continued to do so for so long.  I’m grateful she was two and a half years old and not a newborn. It meant we’d had an exceptionally good run, but this was certainly not how or when I’d planned to stop. I loved that by still breastfeeding her I had an easy way to bring her comfort when needed – when she was hurt, sad or tired.  When she was ill and couldn’t eat or hold down food, being able to breastfeed ensured nutrition, hydration and helped in boosting the immune system.  I could still offer her good nutrition whilst she picked her way through what food she would and wouldn’t eat.  The benefits of long-term breastfeeding are huge, you can read more about them here.   

I had been reducing feeds with a view to stopping by the time she was three and she’d stopped feeding through the day.  I noticed the lump in my breast because as I reduced feeds the milk supply lessened and it became obvious. Initially I assumed it was mastitis, the lump was in the exact place and felt the same as when I’d had mastitis previously, however I was not getting the pain I would normally get with milk build up and I wasn’t getting the temperature that always accompanied these mastitis episodes. 

After a week of it not relieving itself with the usual self-help methods I used I made an appointment at my GP surgery. I saw a nurse who also thought it was mastitis and told me to come back in two weeks if it was no better. I did just that and the GP referred me to the breast clinic. After a two week wait I was finally seen. Cancer had still not crossed my mind as a possibility because I was breastfeeding and so assumed it was still likely to be a blocked duct or a cyst, something like that.    

I should add here that cases of mastitis should be diagnosed and resolved quickly – ideally within a 12-24 hour period and so the advice I received had it been mastitis was completely inaccurate.  If mastitis was suspected I should have been signposted to a breast care clinic immediately; of course it may be the nurse had her suspicions and had other reasons to wait two further weeks. See this article from the Breastfeeding Network for some evidence-based information on the signs of mastitis and some self-help tips.

Throughout our time breastfeeding Grace had had issues with latching on the side of the breast with cancer, I saw a chiropractor with her and tried various methods when she was a baby to try to sort it. I often wonder if there was a difference due to the cancer and that’s why she struggled, but then it’s a common issue to struggle with the latch to one side, and second guessing doesn’t change anything.     

MY DIAGNOSIS

When I was told it was cancer I was alone, not because of Covid, that wasn’t a thing yet, but because I just hadn’t taken in the seriousness of what was happening. My world fell apart, I felt like I was floating above my body and all I could think was I can’t die I need to be around for Grace.  

I attended hospital shortly after the initial diagnosis for some scans to see how far the cancer had spread. I was sat waiting for an MRI when I realised I was looking at a photo of me breastfeeding Grace – I did a double take! In August that year I had been part of a campaign in the South West to normalise breastfeeding and the images of me and Grace were now plastered all over the hospital. I lost count of the amount of areas I spotted them, sometimes I would look proudly and smile, other days tears would fall at the loss and grief I felt seeing the reminder.    

I sometimes flashback to that last night feeding her to sleep, so many emotions running through me, fearing for my life, fearing leaving Grace with no mum and failing her completely.  My stomach turns, tears fall and my heart aches when the memory flashes, I feel like I’m in the room all over again feeling the fear and devastation.   

Fortunately Grace, who was quite the booby monster, actually took it quite well.  My partner took on the bedtime routine to help wean her whilst I sat feeling guilty hearing her cry. Just before bed I would have to pretend I was going to work so she would go with my partner to bed without looking for me, if she thought I was out she would happily go with him and get ready for bed. 

There were sadly always tears at the time of actually settling her to sleep because she was so used to the comfort of feeding to sleep, no other drink helped.  I would sit and cry listening to her, sometimes I’d go down to my parents (they live in the lower floor flat of our house) so I couldn’t hear her cry because I found it so distressing being unable to comfort her in our normal way, in the way she’d only ever known.  I felt so angry I was in this position, helpless and powerless.     

Thankfully my partner would stay with Grace and comfort her until she did sleep so she always had comfort, just not the kind she was used to. 

DEALING WITH MY MILK PRODUCTION  

My next challenge was how to deal with overflowing milk and avoid mastitis. I fortunately managed this by releasing a little of the milk a few times a day by hand expressing, reducing eventually to just the morning and then stopping altogether as the milk flow slowed right down. This worked well which was fortunate as I had no support or advice on how to reduce feeding safely for both me and Grace.

I feel this is something that should have been offered, even by way of signposting elsewhere and that is the main reason I am writing this blog in the hope any other mums who find themselves in a similar position will be able to reach out for the right support they need.  There are medications that can help reduce supply which is something worth being aware of.  La Leche League have an excellent article with tips on how to stop breastfeeding suddenly here.   

If you find yourself in the position of being unable to breastfeed it can bring up a huge amount of emotion.   You might feel guilty, angry, frustrated and that’s normal.  It might be you are ok with formula feeding and concentrating on you and getting through the cancer treatment and that is ok too.  There is no right or wrong way to feel but know whatever way you do feel is OK and there is help available if you want it.   Breastfeeding grief and trauma is real and whatever you feel it is valid.  

For those with smaller babies who may not be able to breastfeed through treatment you may find breast donor milk of use.  Mothers donate their breast milk through local milk bank schemes and then it’s stored and donated to those that need it.  This may feel strange to some parents to be feeding someone else’s milk to their baby, or it may bring great comfort knowing your baby is still getting some breastmilk nutrition.   You can find out more about breastmilk donation here and here.

That said there is of course nothing wrong with feeding formula if that’s what you choose to do and is your preferred option.     

Some mums have been able to relactate once treatment gets to a safe point to feed again.  This is worth looking into and asking questions about.  Be aware your medical team aren’t necessarily experts in breastfeeding so don’t be afraid to ask your questions and seek support from a breastfeeding professional.   

Generally, you can’t breastfeed during chemotherapy as it will pass to the baby through the milk, you may be able to breastfeed through radiotherapy and you are likely to need to reduce milk production before and after surgery to reduce the risk of infection.  With surgery this will also of course depend on the type you have, if a mastectomy is what you are having you are unlikely to be able to breastfeed, however if you are keeping one breast it is possible to feed from breast one alone.     

Breastfeeding has been something very special for me, my body did it very well and it was a wonderful experience for which I’ll always be grateful.  Grace still likes her “booby snuggles” when she needs comforting, this involves her sticking her cold hands down my top, I don’t mind, one day she will grow out of it but she can do that in her own time.   

TOP FIVE TIPS IF TOLD TO STOP BREASTFEEDING DUE TO CANCER.   

1. Check your treatment plan, if mastectomy or chemotherapy isn’t in it there may be a chance you can still breastfeed.   

2. Think about any questions you have and don’t be afraid to ask them, then find professional breastfeeding support and get their opinion on what you’ve been told if you are left feeling unsure.   

3. Seek advice on how to reduce milk supply and/or stop.  You want to reduce the risks of mastitis as much as possible.  Your oncology team may have help for this but if not see what support is available near you.  I’ve listed some resources below and you may have breastfeeding peer supporters in your local area who can help.   

4. Don’t be afraid of your emotions.  Cancer will bring up a lot of emotions, know that this is ok and if you want support it is available.     

5. Don’t be afraid to advocate for yourself, this is your body, your baby and you have a say in what happens.     

A FEW RESOURCES THAT ARE WORTH KNOWING ABOUT.   

• Wendy Jones is a Pharmacist who specialises in medication and breastfeeding. Too often breastfeeding mums are told they can’t take various medications when in fact they may be safe, Wendy can help offer guidance if you need it.    

• Why Breastfeeding Grief and Trauma Matter by Amy Brown –  “A startingly large number of women who want to breastfeed have to stop before they are ready, leaving them feeling a range of emotions including grief, shame and frustration, and often blaming themselves.  Professor Amy Brown has researched what breastfeeding really means to women, how they can feel when things don’t go according to plan.”  This is an evidence-based guide and may assist to confirm whatever you may feel is 100% valid and have some useful information.  Another in this series that may be of interest is Why Mothers’ Medication Matters by Wendy Jones.    
    

• National Breastfeeding Helpline – Independent, confidential, mother-centred, non-judgmental breastfeeding support and information –0300 100 0212 website: 

https://www.nationalbreastfeedinghelpline.org.uk/
  

• KellysMom – an informative parenting and breastfeeding website 

https://kellymom.com/

• Mummy’s Star  – Mummy’s Star is the only charity in the UK and Ireland dedicated to women and their families diagnosed with cancer during pregnancy or within 12 months of giving birth.  Their mission is to provide cancer support to every family facing this traumatic situation. 

https://www.mummysstar.org/

• Find a lactation consultant near you https://lcgb.org/find-an-ibclc/

• The Association of Breastfeeding Mothers – Supporting breastfeeding mums and families.  Trained breastfeeding counsellors run a helpline. 

https://abm.me.uk/

• The Breastfeeding Network – The Breastfeeding Network (BfN) aims to be an independent source of support and information for breastfeeding women and others. 

https://www.breastfeedingnetwork.org.uk/

I was diagnosed with Grade 3 Stage 3 Triple Negative Breast Cancer having spread to my lymph nodes and I had 6 chemotherapies (was due 18 but my body reacted badly, fortunately my 7x3cm tumour could no longer be seen on scans after only 3 chemotherapy treatments).  I had a lumpectomy with full node removal followed by 20 rounds of radiotherapy. I was given the all clear in August 2020 by diagnosed Stage 4 in January 2023