I have just read yet another post on this forum from someone who was pregnant at the time of dx and who has recently given birth.
I have been coming on this site since 2006 and there were very few women at that time in the same position as me ie being pregnant with breast cancer but unfortunately that seems to be changing and there seem to be so many women now in this position and it strikes me that these numbers won’t decline, rather they are going to increase.
We do seem to have lots of categories on this new forum and on the previous forum I did ask about a category for pregnant women but nothing came of it. Is it now time for such a category to be included please? It is the most appalling situation to be in and being able to post to other women in that position is like a lifeline.
Being pregnant at the same time as a dx brings with it tough and sometimes sadly heartbreaking decisions and I worry that posts can go un-noticed without their own category. I only picked up on this new lady (sophiesmum) because I saw a post from jane72 who I know is having treatment whilst pregnant and I try and follow her posts hoping she is doing ok.
Could this category be a possibility? Hope so. Love xxxx
Absolutely…from my point of view there has been no support at all for women in this position and there are obviously women out there who have had to make heartbreaking decisions…the more information and support these women can get the better xx
i think this is a great idea and an essential service for girls who find themselves in this position. I have a feeling that it is only since jane posted and told everyone her position that the other ladies probably felt like they were not on their own and felt they could face posting and joining too.Its not just coincidence thatthey are all pregnant and joined up now, its likely to be because they saw someone in their own position they could connect with. How many girls have looked on the site at the wrong time and not found that and so soldiered on alone?
It is not just the support that is needed, these ladies also need the information that other users in their position are able to give. Even the medical professionals often seem at a loss in these cirumstances and i feel it is essential that, at such a vulnerable time, these ladies dont have to rely on good timing and coincidence that they logged on at the right time. There needs to be a dedicated subsection of the site so that current and past postings can be accessed for support and information. The timescale these ladies have within which to make huge decisions is very tight and they need immediate access provided by an experienced charity such as this.I hope something can be sorted asap.
Absolutely-there are women out there having to make very tough decisions without all the information they need. My local hospital had never dealt with a pregnant woman with cancer…when I was first diagnosed they said if it had spread I would have to terminate-I had to wait 2 weeks for those results and when I was told it had spread I was devastated-not for me but for my baby. They then decided that perhaps I could carry on with the pregnancy and we could ‘see what happens and learn from my journey’. Well there was no way I was going to let it happen so researched through the British medical journals to find a consultant who had written an article on the subject. I emailed him and he recommended my current oncologist. My local hospital wouldn’t even refer me to be treated so my lively midwife did it. Without her and the support of some lively people I wouldn’t have Sophie here beside me today. Not a day goes past without me counting my blessings. There are many other people in similar situations and they shouldn’t have to go through what I went through to keep my daughter
oh my god sophies mum, you have done so well to get to the point you are at, what a terrible journey you have had to get there. Well done on being so proactive. Your photo is lovely bythe way, i get little tingles all over when i see it and want to give her a huge cuddle! You are fortunate to have such a beautiful little girl to add to your tribe of boys!
What a precious gorgeous little girl you have and she is also so lucky to have a mum like you in not giving up in trying to keep her -what a story to tell her when she is older hey.
Thank goodness also for all those other health officials involved who went the extra mile and beyond for you. I would walk over hot coals for my onc and I am sure you would do the same for your ‘lively’ midwife and others. There are some good people out there.
Not forgetting your three boys - I hope they are enjoying having a baby sister around.
Absolutely 100% think that this would be a fantastic idea…from my point of view also there has been very little support for women in this position the more information and support us women can get the better its hard enough being told you have breast cancer let alone breast cancer whilst pregnant!!!
Thanks for your messages. We’ve had a lot of requests for new sections over the past couple of weeks, so I’m going to try to take some time this week to look at them all and decide what to do about them. We have to balance the need for people to have helpful sections with the need to keep the forum simple and easy to navigate.
Having said that, I’ve got a couple of questions for you:
If we had a section for pregnant women, where would you want it to be? Under “talk to others in a similar situation”? Somewhere else?
What would you want it to be called, and more importantly, exactly what would you want it to cover? There are a lot of issues around pregnancy and breast cancer. It seems from the messages that you specifically want a section for people who have been diagnosed while pregnant, or have become pregnant during/soon after treatment. Is that correct?
I’d really appreciate your thoughts, to help us get the decision right.
I think it would sit well in ‘Talk to others in a similar situation’.
For me, the issue is talking to other women who were diagnosed while pregnant and discussing treatments. It’s really helpful to know which drugs different oncs have recommended for use during and after pregnancy, as I feel much better armed to go to appointments with my own oncologist knowing what treatments other women have had. Breast feeding (for those with remaining breast/s) is also an issue I’d like to find out more about by talking to others.
Perhaps the most important issue is that some women are still being told by local hospitals with little experience they should have a termination on diagnosis, when this might not always be necessary. It would be wonderful to think some of these women might find their way here and realise there might be ways around such drastic action, if they really want to keep the baby.
Hope this helps! Thanks for looking at the request. xxx Jane
I think keeping it fairly simple ‘Pregnant with Breast Cancer’ in the category of Talk to Others in a Similar Situation.
Yes, there are lots of issues that could be covered such as:-
Chemotherapy during pregnancy or after the baby has been born - this would depend on how many weeks pregnant you were at the time of dx.
Which treatments should be used that are best and safe for mum and baby and if different treatments than others, why?
Will baby have to be induced? If so, what if a normal delivery is not possible, what about the implications of a c-section?
Breastfeeding - this is still possible in some cases.
Termination - there may be times when unfortunately there is no other option BUT it is important to know that a dx whilst pregnant doesn’t always have to result in a termination.
Coping with a newborn and having chemotherapy/radiotherapy/herceptin and having to travel to hospital - do you have help and support at home to look after the baby during this time? What if you need 6 weeks of radiotherapy maybe, a long journey to the hospital, delays with machines breaking down - you need a Plan B.
Future fertility - will it be possible to have more children?
Making sure your team of Doctors from Surgeon, Oncologist to Obstetrician all talk to each other to come up with the best possible care and outcome for mum and baby.
Hope to others in a similar situation - essential.
Postnatal depression.
For me, the main issue is being able to talk to someone in exactly the same position, we will all have similar fears and worries but it is being able to discuss them and talk them through that I think is vital.
There will also be future issues to discuss about whether you should tell your children about your dx and there are some ladies who post on here who were dx with secondaries from the start and have very young children.
One final thought, ante-natal classes - would you still go to them? Great for giving information when pregnancy is progressing normally but what about when you have been dx with breast cancer? You possibly have many choices that other people take for granted taken away from you, giving birth, breastfeeding.
These are just some of my initial thoughts - hope they help.
“Termination - there may be times when unfortunately there is no other option BUT it is important to know that a dx whilst pregnant doesn’t always have to result in a termination.”
There are many, complex reasons why having a termination may be what a woman decides to do when she is pregnant and diagnosed with cancer. This forum MUST ensure women that who do have a termination are not judged negatively for doing so but get the support they need to help them deal with what is a devastating and unbearably distressing decision.
PS As someone who has just had a termination because of a cancer diagnosis, and who has also lost a full-term baby at three days old, let me say that the pain of having a termination in these circumstances is as excruciating as the death of one’s child.
I have nothing but admiration for women who are able - or choose - to continue their pregnancy in these circumstances, but those women who do not need compassion and support too.
Leah - you may wish to check out the Sands (Stillbirth and Neonatal Death Society) website - uk-sands.org for some ideas of relevant topics. Or feel free to contact me - I run a Sands group.
I would also strongly support a separate section for this topic. I was diagnosed when pregnant but miscarried, and have had failed IVF.
I would like to have somewhere to talk to others who are considering, or have gone ahead, with a pregnancy after treatment. I am hoping that in another years time I will have this opportunity.
There are so many issues around this subject that it would be useful for discuss.
So sorry to hear about your situation, Moomin. From joy to despair within weeks, isn’t it? I hope that you still have hope. xxxx
There is an american website, hopefortwo.org , which is a support site for ladies pregnant with cancer. I have only had a quick flick through it so cannot vouch for it but it may help when designing a thread, or provide support to any women going through this now.
Your post is exactly one of the reasons why we need this section on the forum. I would hope that no-one would be judged negatively, that is not why we come onto this site. I am sorry if my comments upset you Moomintroll but I was just putting down what I thought were some ‘headlines’ for Leah to work on in getting this category.
Likewise, there are also women out there who we shouldn’t forget who have just had a baby and then discover they have breast cancer. Some of them will have had the disease whilst pregnant but were totally unaware.
My situation was compounded when I was told by my onc not to have any more children - this was one more devastating blow that I found hard to come to terms with particularly as just 3 months earlier I had lost my eldest child aged 4 to cancer.
I actually don’t know why it has taken this long to have such a category. Hopefully we will get one soon.
Moomintroll - just seen your PS - life can be so cruel can’t it. Seems like you and me both have had tough times in the past and then you have to deal with bc on top of it all - unbelievable.
Flora - you too have had a tough time. I think you raise other important areas that need discussion also.
Tors - thanks for the link.
Please, if anyone else has any suggestions, please let Leah know as soon as possible.