Linda, sorry for not replying sooner. No my cancer isn't hormone positive so I won't be on any type of drugs after the chemo and radiotherapy.
Well, I wrote my letter to the Obstetrician and explained how I felt and what, after research, I considered my options to be. I handed it in a couple of weeks ago and had my latest appt last week.
They are supporting me!! 🙂
My Obstetrician thanked me for a 'well balanced and thought out letter'! Apparently Thomas Hale is a well renowned pediatrician and pharmacologist in the USA and his research is solid. Officially they have to tell me that it isn't advised to breast feed however this is because not enough research has been done in the area so it's safer to say no than maybe or yes. After reading the research and discussing it with one of the pediatricians, they came to the conclusion that I could breast feed as long as I pumped and dumped for 10 days after each chemo cycle. Hale says 5 days for the drug I'll be on then but they want to make sure that things really are clear of my system - makes sense to me! The pediatrician is meeting with me next week to discuss how things will work (in terms of breastfeeding for 11 days and then how to pump and dump for 10 etc) she is the neonatal pediatrician so has lots of advice and experience when it comes to dealing with mothers who can't feed their baby easily.
They were actually more concerned that the radiotherapy would damage my breast tissue which may cause my milk to stop or reduce on one side...but I don't care even if I can only feed from one side and end up with one bigger than the other. It is worth it (hey, I'm lucky to still have 2 in the first place, right!)
Obviously they can't guarantee that there won't be long term implications for baby but they said that if they thought that their might be - even in the slightest - they wouldn't support the research or me. I'm confident that as long as the chemo is out of my system before I give baby my milk then baby will be fine...there won't be any drugs to harm baby in the first place, especially as I'll be dumping for twice as long as suggested by Hale (I think they all it 'Half Life' - the drug halves each day it is in your system).
Thanks for your support ladies - I'm tired of people looking at me like I'm mad or want to hurt my baby when I've thought so carefully about this and done so much research! It's worth the fight though as, in theory and as long as all goes to plan, I will feed baby for a year and it's only the first 9 weeks where I'll have to be careful.
merry christmas honey (i hope thatyou will )!
i was reading my latest edition of Amoena Life ( worth registering for http://www.amoena.co.uk) and it has a great article on cancer in pregnancy, it also has links for support groups especially for pregnancy:
I admit that I haven't read all of the thread in detail, but I just wanted to talk to you about this.
It's probably one of the most important feelings in a woman to breastfeed, I needed to do it, I wanted to do it and with my first baby it didn't work out as we both had thrush, but I carried on regardless and finally got it sorted and we had a good 6 months of breastfeeding in the end.
but, i was diagnosed when my 2nd child, stanley was just 7 weeks old and had to stop breastfeeding him immediateley and i was so so so cross about it as he latched on straight away and it was just perfect and i had to stop!!! so I completely understand where you're coming from. this is your pregnancy, your child, your choices - and f----ing cancer has changed loads of things and this is still an area where I'm still angry at cancer!
but, i had to go for a bone scan the day i stopped breastfeeding and they injected me with radioactive stuff and i realised i'm in a different world here, and i dont' want my baby to be part of this.
i would advise - that breastfeeding is so important, so important - but, the baby's health is sooooooooo much more. so, maybe let that battle go now, enjoy your baby and bottle feeding is ok - i've got 2 boys, one breastfed, the other bottle and you would never know the difference, we're all the best of mates and so close and they're just gorgeous and they're health is all important.
just needed to share that, hope it's helpful, difficult decisions, thinking of you
I was wondering if your cancer was hormone receptive and if so whether breastfeeding would put you at a higher risk of a re-occurence?
I can fully understand you wanting to take back control of your body and not let cancer stop you doing anything you want to do, why should this awful disease rob us of our freedom of choice but personally I think you would be taking bigger risks to you and your baby by breastfeeding than by not breastfeeding.
Good luck in making your decision, this must be so tough on you and your husband/partner.
Faye i agree with a lot of what rachel has said and was a bit worried about just using research from La Leche as they are very very very pro breast feeding and i am never sure they are totally objective.
Really really good luck with your decision tho. As a midwife i am hugly pro breastfeeding when it is the right decision for everyone
Chemo wise I found the first 3 cycles quite manageable ( wasnt pregnant so not the same as you!) but crashed at number 4 so it maybe your priorities may change anyway.
Thank you for posting. I really do want to do this but of course at the same time I won't want to harm my baby. I feel as though I've at least looked into potential possibilities here and will then be handing this over to my specialists for there input - I won't be making any firm decisions in the meantime.
At the end of the day it could also be an option to relactate once treatment is over...but we'll see about that. This latest cycle has left me feeling really rough so that also makes me wonder how successful I'd be.
I just don't want to give up my choices to Cancer...it's had it's turn already! 😉
Thanks again for your reply; it is appreciated
I am so sorry but I have to disagree with you on the evidence to suggest that that your will not harm you baby shoud you decide to breast feed whilst on chemo, even by pump and dump for the time periods that Hale suggest you do this for.
Most drug are biotransformed in the liver, gut lining and certain other tissues into drug metabolites - often these metabolites are more potent than the parent drug and have a much longer half life than the parent drug, infact many chemotherapeutic agents are given as pro drugs to be converted over time by the liver into powerful cytotoxic therapeutic compounds.
Also by researching the manufacturers license for prescription with the drugs you mention (taxotere, 5-FU, epirubicin, cyclophosphamide) - all recommend that no one breast feeds when on these drugs so it is unlikely that any doctor will offer advice out side of the manufacturers license as it is a total unknown as to what the effects to the human baby will be -
NB there will have animals studies but these are poorly comparable with human effects for example thalidomide was not harmful to pregnant rats but increadibly mutagenic to pregnant humans.
I realise you have have every desire to to do the best for your unborn baby and i commend your determination and as i suggested before; it is possible to allow BF for initiation of the reflex and to provide the wonderful stuff that is colostrum; but is it worth risking your childs health with an unknown drug metabolite?
see the following link http://www.nlm.nih.gov/medlineplus/druginfo/meds/a696031.html
or look up in the BNF (british national formulary) appendix 5
you also have to consider the other drugs you will be prescribed such as the antiemetics and steriods e.g.
Ondansetron an anti-emetic - manufactures advise avoid prescribing if breast feeding
steriods can be taken taken up to 80mg daily when breastfeeding
Domperidone is secreted in the breast milk but at a level 'probably' to small to be harmful - the word probably is worrying as it means they do know or the levels are idiosyncratic !
this is purely my understanding of drugs as a non medical prescriber tho'.
Your ONC will be able to tell you more of course
I do send my best wishes and all my hopes that you will be able to sucessfully breast feed you little one despite my comments xxx but i would feel terribly remiss if i did not share with you my understanding of drug activity and licensing.
I know this is a different situation, but I did discuss what you had queried with a friend who was unable to feed her baby early on because initially she was too ill (pre eclampsia) and then because her baby was too poorly having been born at 1lb 6ozs.
She was unable to feed for about 10 weeks but insisted on being supported at first to 'pump and dump' and kept that going until baby was able to feed normally, and this really worked. Baby is now a healthy 17 year old, starting on A level studies.
It took a lot of commitment but she felt it was worth it.
I know there are a lot of different views, but mine is that you have been through so much, you and your baby deserve being able to breastfeed, it is such a lovely time for you both. You are clearly well able to manage the situation and I hope with all my heart that it can work out for you.
Just a little update (actually it's very long - sorry!): more for any future women in my position than anything else to be honest.
I appreciate that their are many issues and questions around whether both physically and mentally I will be able to breastfeed and also obviously the question of chemicals in my milk. However the chemo will be over 3 months after baby is born and I planned on breastfeeding for 12 months; the emphasis is also on getting my life back so why should I accept straight away that I can't have my 9 months of 'normality' if it MIGHT be possible?
I've had lots of 'no, you can't breastfeed' but not really any supporting evidence as to why. I can think of many reasons why it makes things more difficult but nothing that says I will kill my baby or harm myself. More to do with toxins and how long they stay in your system and reduced milk flow due to stress and tiredness and potentially the operation. My Midwife is 100% supportive of what I'm suggesting so long as the specialists agree with the research I've found.
Anyway, this is what I have been sent from La Leche League. I intend to write it into a balanced letter and send it to my Oncologist and Obstetrician and ask their opinion before making any decisions. I have research to say that you CAN breastfeed whilst having chemo and radiotherapy, it just means that you have to express and throw away your milk for a few days each cycle. What I don't know, and which is why I'm asking my specialists to look over what I've found out, is sample sizes etc but it is a starting point if nothing else.
Medications and Mothers Milk 2008 has the following statement for Docetaxel (which I'll be having 3 cycles of once baby is born): “Withhold breastfeeding for a minimum of four to five days.”
Medications and Mothers’ Milk, by Thomas W Hale PhD, 2008, makes the following statements about the EC medications:
Epirubicin: “Mothers should be advised to discontinue breastfeeding for at least seven to ten days following the use of this product.” And “Withhold breastfeeding for at least seven to ten days.”
Cyclophosphamide: “Withhold breastfeeding for a period of at least 72 hours.”
The other medication you may have if you switch to the FEC treatment after the birth is Fluorouracil. Hales states “Mothers receiving injections of 5-FU should withhold breastfeeding for a minimum of 24 hours.”
Although Hale recommends testing for some chemotherapy drugs which can take weeks to clear from the body, it isn’t mentioned for these. The book also states “Because chemotherapy often consists of numerous medications used simultaneously, you should always choose to discontinue breastfeeding relative to the agent with the longest half-life.” In your case, Epirubicin has the longest half-life and clearance time.
Being able to feed your baby colostrum after birth will make a big difference for him/her. Even establishing breastfeeding for a few days after birth could make it easier for you to rebuild a milk supply later.
As for radiotherapy, you can breastfeed during this. The reason mothers may need to feed from just one breast is that this may affect a treated breast’s ability to produce milk. It is possible for a mother to feed her baby from one breast. So if you decide to pump and dump while on chemotherapy, if you wanted you could concentrate on the unaffected breast which won’t have milk production affected by the radiotherapy.
The Breastfeeding Answer Book states:
“Like diagnostic x-rays, radiation therapy does not cause human milk to become radioactive, so breastfeeding can continue. Radiation of the breast, however, damages a woman’s breast tissue, which may affect breast development and lactation in that breast at the time of treatment and with subsequent pregnancies (Neifert 1992). One study showed that breast rradiation causes “ductal shrinkage, condensation of cytoplasm in cells lining the ducts, atrophy of the lobules, and perilobar and periductal fibrosis” (David 1985). Studies on women who had undergone radiation therapy to one breast and later became pregnant indicate that some women will produce enough milk to sustain their babies. In one study of thirteen pregnancies, the treated breast produced milk in four cases and failed to produce milk in six cases; milk production was suppressed with drugs in the other three. All reported little or no change in the treated breast during pregnancy (Higgins and Haffty 1994). In another study, eighteen of the 53 women (34%) reported some milk production from the irradiated breast and thirteen (24.5%) breastfed., with five (9%) describing their treated breast as smaller. Two-thirds of the nine women who commented on milk production in the treated breast described it as “less but adequate”. One baby refused to nurse from the treated breast.”
“Like a mother who has had breast reduction surgery, a mother who has undergone radiation treatments to one breast will not know before her baby’s birth if she will produce enough milk to sustain her baby. The only way to find out is to give breastfeeding a try. If her baby needs more milk than she can produce, she can continue breastfeeding and supplement at the breast with a nursing supplementer or give supplements using other feeding methods.”
“If only one breast is receiving radiation treatments, breastfeeding can continue on the unradiated breast. The treatments will not affect the function of the other breast.”
Whichever option you choose, radiotherapy will impact how much milk you can produce, but you may still be able to produce a substantial amount for your baby. Even small amounts of breastmilk can make a difference to a baby. Mothers who have found themselves in this sort of situation have decided to define their own levels of success with breastfeeding in terms of what it is possible for them to achieve.
I'll also add the the info above from La Leche League has been very supportive of the specialists treating me and always advises to get their opinions etc before making a decision. Also, this information was for my specific case so might not be suitable for everyone. I just wanted to give a slightly different viewpoint from that which is most common so that people aren't automatically told 'No' and have yet another opion in their lives taken away from them
Good luck to anyone reading this who it helps 🙂
Hiya. Im a midwife and i think you should speak to your midwife about this all too. I could give you advice but its certainly not my place and it might not be want you want to hear either!
Ive finished my active treatment now but I had to suddenly stop breastfeeding when i was diagnosed with breast cancer when my daughter was 8mths old.
very good luck with everything
Hi Faye, I am delighted to read your post this morning, and just wanted to wish you all the love and luck in the world with your new baby.
I was diagnosed when my baby was 9 months old and had just finished breastfeeding him, so I was so upset to read your first post.
Keep us posted huni.
Love and hugs
OK so it seems I have options!!! Who knew! LOL
My Onc has said that my general chemo cycle means he would like me to have my first post baby chemo session 3 days after baby is born (which would be 3-4 weeks after the previous session). However he is happy to delay this by one week to allow me to feed baby my colostrum.
The La Leche League have come back to tell me that they can give me info to pass to my specialists which has guidelines about how long each individual drug stays in your system and how that relates to breastfeeding. So, I may be able to express my milk and throw it away for a few days after each chemo session but then carry on as normal for the rest of the time between sessions. It really depends on the type of drug and how long they stay in my ststem and how I feel as all of this is going to use extra energy. They are being very supportive of the specialists decisions etc which is good as I feel it is balanced advice. At the right time, my milk could also be tested at the hospital to ensure that it isn't toxic so that I know baby is safe; the last thing I'd want is to make baby ill.
LLL also said that it is possible to not breastfeed for a few weeks or even a couple of months and then take tablets to start the flow again. So potentially I could complete my chemo cycles and then start to breastfeed - I never even knew this was possible but apparently some adopting mothers do it! (how clever!!) However this isn't guaranteed to work.
Either way, as I said, I now have options depending on the drugs etc so feel better that I MIGHT in some way be able to do this. Basically I'm focussed on the time after treatment; I will be having some sort of treatment for the first perhaps 3 months of baby's life but I intended to breastfeed for a year - hence I could still do so for 9 months after treatment as I had planned and the cancer wouldn't have won that battle!
Wouldn't it be typical that after all this my lovely newborn won't latch on so it all goes pear shaped anyway LOL (my daughter wouldn't latch) At least I won't feel guilty that I didn't look into it or try 🙂
Firstly honey I am so sorry this has happend to you, what a dreadful position to be in. I feel for you being a mum to two girls who loved BF very much.
However, the very toxic chemotherapy drugs are passed out into the breastmilk where if injested by baby it will be very, very toxic to an imature body system and it could be potentially lethal to babe - so no don't do it! I would have to say go with the advice from you OB GYN and ONC, btw I am nurse and therapeutic pharmacologist.
Have you discussed feeding for the first few weeks so that babe gets the colostrum and you get the feeding reflex established then swapping to bottle with pump and dump? during your chemo?
equally faye the chemo may make you feel very low and tired ( it did to me)you may find BF or pump/dump difficult during this time. So listen to you body honey!
I'm sending you all the positive vibes possible for happy resolution to this xxxxx rachel
I hadn't thought about contacting the NCT - which is actually quite funny as I hold a couple of committee posts on the local NCT! I've emailed their main contact address and sent the same email to La Leche League as well. Finally I've emailed the lady that runs our local breast feeding cafe: maybe they'll have access to more information than I do.
From what I've read I could still BF during radiotherapy as long as it was only on the non-affected side so it is just the chemo I need to get past.
I'm also due to meet with my midwife so will ask her too. I obviously don't want to do anything to harm baby so won't BF if I really can't but I don't want to resign myself to giving up without even looking into it. Doesn't cancer make life complicated eh!?
Thank you again for your message
I'm sorry - its not something I know about, but do you have a friendly midwife who could do some research for you? of maybe contacting National Childbirth Trust would be helpful?
what I really want to say is that I still remember you, baby and the rest of your family in my prayers
I hope that everything goes well for you
god bless xx
Have any of you found a successful way to breastfeed whilst having chemo?
I know that everything says you can't BF whilst having chemo but some go on to say that once the drugs have passed through your system you can carry on. And they say that the main drugs themselves pass through within a couple of days - hence I could 'pump and dump' my milk until it was safe to use again.
Basically I am 24 weeks pregnant and have been told that they will bring baby out between 34 and 36 weeks. This will be just after session 4 of chemo (EC - FEC without the F!) and will be followed by 2 further sessions of chemo (potentially with the F).
I REALLY REALLY want to BF: every choice during pregnancy and the birth have/will be taken away from me and I want something to stay as I had originally planned. I just need to find a way of doing it. I could pump and dump for weeks but that might get a little too hard if it goes on for some time. But, if I could just pump and dump for a few days each time or even perhaps just have my last chemo session, wait a couple of weeks, have baby and BF for a week or so before my next session I would be happier.
What can I do?? At the moment I have only mentioned BFing in passing to the Obstetrician and Oncologist and they have both said no chance. However they are saying that because it is the easy option and they haven't researched it and don't know how important it is to me.
I'm currently on day 8 of my first chemo cycle and although I have been feeling a little tired, I'm actually doing really well. Hope it stays this way!
Any advice greatly appreciated