Radiation and Lactation

Hi and a very warm welcome to the online community

It can be very difficult to make the right treatment decision when different consultants are giving you conflicting information. 

I noticed that your post hadn't had any responses yet and thought it might be an idea to join and post this in the main breast cancer group as well as here. Clicking on the link I've created will take you there.

I know that the breast cancer group has a monthly radiotherapy thread where you can post questions about radiotherapy treatment. This is the link to it and you could post there once you've joined the group.

I'm also tagging this group's Community Champions , GRANNY59 and into my reply in case they can help you further.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best

x

Hi 

I see your post hasn't received a reply and I suspect it is because it is this is such a difficult one to answer. 

I don't know the answer and I am post 50, but wanted you to know that you aren't being ignored and wanted to wish you all the best.

Every breast cancer is different so treatment will also depend on your type of BC.  If for instance you are ER+(oestrogen positive) breast cancer, then the doctor will want you to stop producing oestrogen which will stop lactation.  Presumably Tamoxifen is the medication she has recommended as you are pre-menopausal? 

It might be that you could Ask a Nurse this question.  If you could either fill in your profile or let the nurse know your exact diagnosis.  (ie. type and grade of cancer) then this will be extremely important for her to help answer your question.  The replies usually take a couple of days due to the experts doing this when not at work.

Here is a link to the NHS predict tool which aims to predict the likelihood of cancer returning and it is probable that your doctor will have used this tool too before making her recommendation.  As with anything there is no hard and fast answer, but you will be able to put your own results in to see why she is recommending medication to stop lactation.  For instance, with mine ER+, grade 2, 8/8 for oestrogen positiv.  With Predict there was a reduced chance of my BC returning by 3% in 15 years.  It might not sound much, but for instance if yours were the same, then you are young and 15 years isn't that long!  66 for me wouldn't be particularly old these days, but think how old you will be in 15 years and you will want to be around for a LOT longer for your newborn and that 3% could be a huge figure! (it only goes up to 15 years on Predict).

You may also want to join us on the main breast cancer group as well as being in the under 50's group. I appreciate that many of us won't have as much in common with you being under 50, but there may be other information which you will find useful from discussions in this group and it is much busier than the under 50's group.

One final suggestion would be to go back to your doctor and ask her specifically why she is making her recommendations in a clear and concise list so that you can understand her reasoning.

I do feel for you having to endure this when you've a new Mum and my heart goes out to you.

[EDIT} I see two of us noticed your post at the same time!!!

Kindest wishes,

Thank you, Lesley!  I have tried out the Predict tool, joined the main breast cancer group, and posted my query on that page.

I talked to a nurse on the Macmillan support line, and then a counselor at the local Maggie's (she is also a radiotherapy tech).  I decided not to cancel the CT planning on this week even though I don't feel confident in the doctor anymore.  For one thing, I can't comfortably postpone the treatment any longer.  I've already had a long wait to make sure the baby was delivered first, so I feel I've run out of time to book other consultations.  I was also reassured that it takes a team to plan the treatment, and the techs that see me everyday will notice if there is a change in my breasts (size, shape), so even though the doctor made me feel like it was completely on my shoulders to know if my breasts were ready to get started, I've been advised now that the experts will be able to tell.  They are supposed to assess my breast at the planning session and then before each treatment session.  Will see if that's really true...I was also advised, worst case if they change is that they would have to do a replanning which doesn't take as long as the initial planning (it will be less than the initial 7-10 days).  

Aside from any possible lactation, I'm also losing swelling and weight since the delivery so not sure why she was so frantic about booking me in straight after delivery and now is frantic about body changes.  Isn't it common sense that my body would change after having a baby?  Anyway...I'm going to try to ignore the doctor and am hoping the techs will inspire confidence.

I saw your advice about adding more details about my situation.  I will add them this week.  Thanks again for all of the help and info!!

Hi

I am pleased that you've managed to get some other advice.  I agree that it is a team who look at your treatment and I guess a few heads are better than one!  I guess when you think about it, although they see 1000's of breast cancer cases, there won't be that many women who have a baby at the time of diagnosis, so they will be getting as much advice as possible in order to guide you.  

I do know that there is an 'optimum time period' for starting radiotherapy post surgery so I guess that is why she is keen to get your treatment started.  When you do start, I guess you need to ask the question from your radiotherapy team on an ongoing basis as they are all extremely trained and know what is 'normal' under radiotherapy.  I can recall not seeing many of the same people twice with my 15 sessions as it was such a huge team as it covered the whole of my county, so you will definitely have a lot of heads to ask!

With my CT scan they initially wanted me to do the breathe technique as it was left breast.  Because I lost an elbow in a road accident years ago, it wasn't possible, so they spent more time working on my scan and planning to ensure that the radiation rays missed my heart.  They were extremely reassuring and I found, knowledgeable. There were a couple of occasions when they couldn't get me in the correct position for the scanner and one time, they pulled out for 5 minutes to give themselves time to regroup, come back and try again - after I think about 3 attempts and although they kept apologising, I was delighted that they were taking so much care.  They are experts in their field and I am sure that if they notice there is a change on their file (which is programmed into the radiotherapy unit), they will be able to re-planning very effectively.  

I do wish you all the very best with your upcoming treatment and your little one!