Newly Diagnosed

Hello, I’ve been newly diagnosed and thought I had better join this forum, so that I can get some support and have my many questions answered!

I was diagnosed with invasive lobular cancer only last wednesday (I think)…wow, how my life has changed. I am 33 weeks pregnant and have a son (11yrs old) and a daughter (8yrs old)…I have been booked in for a mastectomy whilst still pregnant on 14th November, followed by an induction of my baby on 28th November followed two weeks later with chemo…to say I’m not scared would be the bigest joke of my life, but I need to take this all a step at a time, as it is too big to comprehend! I have no idea how I will look after a newborn baby with chemo, but I guess I will find a way…I’m trying to remain positive, although I definitely have some “down” days.

Anyway hello from me.

Hi

Sorry you ave found yourself in this situation. There are specific pregnancy threads on here that might help you.

Just wanted to bump you up… No pun intended.

Dx

Hi Twoandabump

Welcome to the BCC forums

I am sure your fellow users will be along shortly with lots of support and information, in addition I am posting a link to the BCC ‘Pregnancy and breast cancer’ factsheet, although you probably know most of the information in there it also contains further support ideas BCC can offer you:

share.breastcancercare.org.uk/forum/viewtopic.php?f=10&t=32569&p=563110#p563110

The following link will take you to specific pregnancy threads as mentioned by others:

share.breastcancercare.org.uk/forum/pregnant-with-breast-cancer-f175.html

Our helpliners will be here to support you too, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000, they can offer you information and a listening ear when you need one.

Take care
Lucy

Hi,
Sorry you have had to join us, but this is a really good place for support. I am now 1 year on and have found it invaluable.

I was in a different situation to you as single no kids (age 34), but I don’t know if you noticed that there is a section under ‘Talk to others in a similar situation’ on ‘Pregnant with breast cancer’ you may be able to get some support/advice from some of the ladies on there, I’m sure they would be happy to help.

Hope all goes well for you, and remember this is always a better place for advice than random googling, and there is no such thing as a stupid question.

Jen

Hi Twoandabump

Sorry you have to join us on here but we welcome you and your bump and you have definitely come to the right place for advice and support.

It is hard enough having to deal with a breast cancer dx but when pregnant as well it turns into a very isolating experience. Although numbers are increasing slowly, it is rare but it still sends a shiver down my spine when I read a new post.

Midge, Lucy and Squeak have been kind enough to point you in the direction of the pregnant with breast cancer thread and it is really worth having a look in there. There are ladies who have been through this at all different stages in their pregnancy, some in the first trimester, some in the second and in the third. Treatment varies depending on the pathology of your cancer and the stage of your pregnancy. Some ladies do have to have chemo whilst pregnant but have gone on to have healthy babies.

I do hope that your oncologist has experience of dealing with ladies who are pregnant but if not then please do not be shy in asking to be referred to someone who does have experience. Same goes for your obstetrician. At this stage you really do have to have all your medical team working together. Having said that it sounds like you have a good plan so far.

I was in a similar situation to you in that I was 30 weeks pregnant when dx and had my surgery. I was then induced at 37 weeks although they did try at 35 weeks but baby was staying put! My onc was hoping for a normal delivery rather than a c-section because like you I was going to be starting my chemo two weeks after baby was born. I went to the wire because baby wasn’t coming out and in the end I had a c-section booked. However, on the morning of the c-section they tried one last time to break my waters and it worked! The reason they would prefer a normal birth rather than a c-section is because of healing time afterwards and risk of infection especially as when you start chemo your immunity will be wiped out.

Chemo isn’t nice. Some people have bad side effects but some don’t, we all react differently to it. It also depends on what chemo you are having as there are so many different ones. You will find from this forum that treatments vary from hospital to hospital. Your pathology results/onc will determine what chemo you have.

If you want to breastfeed your new baby then you may still be able to do that with your other breast but I am not very knowledgeable in this area but there are ladies on this forum who are so hopefully they can answer any questions for you.

Hopefully you will have other family members and good friends around to support you. Take up any offers of help. It is scary but you will find that with the love and support of your family and your new baby you will get through this.

The forum is normally quiet over the weekend so you may not get that many responses. Also, most of the ladies who have been in a similar situation don’t come onto the forum as often, they are busy with their families and trying to move on and although the fear of living with this disease doesn’t go away entirely they are trying to put it behind them.

I hope the surgery goes well for you and baby, who you will be meeting a bit sooner than you thought! Take care and keep us posted with how you are getting on.

Love xxxx

Hi Lucy (Moderator)

Just wondering whether it would be worth moving Twoandabump’s post to the ‘pregnant with breast cancer’ category? Thanks. xxxxx

Hi Swissmiss

Thanks for telling me your story, gosh it sounds very, very similar to mine. I am 33 weeks pregnant right now, I have my mastectomy booked for the 14th November and induction of labour for 28th November, and yes, like you they would prefer a natural delivery due to healing etc, because they want to start chemo just two weeks later. I’m so, so scared! How was your recovery after your mastectomy? I have heard so many horror stories about not being able to use my arm properly etc (I’m having partial lymph node removal too), and tbh I’m going to have a baby to hold just two weeks later! I’m also scared for my baby’s health whilst being operated on too. Then the very thought of chemo with a new baby to look after fills me with fear and dread, not to mention my other two children…well at the minute I’m trying to just think about getting over the operation, the big picture is far too difficult to comprehend right now, so I will take it a step at a time. I’m trying to focus on seeing my baby at last, who is so, so precious to us (we miscarried two prior to this one)…I do wonder how I could have possibly ended up in this hell hole lol! But I guess there are many other women who have gone through this situation too and come out the other side. How much help did you need with your baby when you were on chemo? I need to plan for the help I will need. I have a very loving and supportive sister and mum who live locally and want to help and my partner also wants to do what he can, but we need him to remain at work, as I have given up my job as a childminder now, due to the fact I could never work and go through this at the same time!!

I guess at the moment I would really like to know how you managed…what coping mechanisms you used, really the reality of the situation I’m about to face I guess, because forewarned is forearmed!

Hi

I’m not in the same position as you, being a lot older for a start but thought I would post anyway.

I had right Mx and node clearance 3 weeks ago and could use my arm ok the next day. I know for all ladies these things are different but I was fortunate not to be cut in my armpit but have on continous scar from where my breast was to underneath my armpit towards my back. I was scared of the Mx op but honestly it was not that bad. More uncomfortable than painful.

I don’t know how it affects you being pregnant but I hope I can at least make you feel not so afraid.

All my best wishes to you and yours M

Hi Twoandabump

It is a good idea to take one step at a time and to be honest if your hospital was anything like mine they only give you information on a ‘need to know that day’ basis - they don’t look too far ahead. This was particularly so once I had started chemo anyway.

I had a lumpectomy but do have a large scar running under my armpit. I had SNB (sentinel node biopsy) and although they found a ‘micromet’ of cancer in the sentinel node they didn’t take any more nodes out. I did have radiotherapy though.

As for use of my arm with a newborn baby, I remember very well attending the physiotherapy session at the hospital. I was surrounded by ladies who were mostly 60+ I would say so felt very isolated straight away then add in a newborn to that mix too. The nurse terrified me with what not to do, almost everything really, but hey I had a brand new baby and there was no way I could not use my arm. Having said that, lymphoedema is not something you would want either. I just got on with looking after my baby as normal although being conscious of my arm too. I am careful when it comes to lifting heavy shopping bags but that is about as far as it goes. I play tennis too - although my serve isn’t that great - that’s just me not the surgery!!!

You say your baby is precious even more so because you sadly miscarried twice and I think it is from this you will take your strength as well as your husband and two children. 3 months before I was dx my daughter died from cancer aged 4. I took strength from her and the courage she had shown in dealing with the disease. I had to get better. I had a toddler and was about to have a new baby and mourning the loss of my little girl (still am and always will).

I started chemo two weeks after my baby was born. I realised one of my big mistakes was not shaving off my hair or getting it cut shorter as I would be winding my baby and when back in my arms I noticed there were clumps of hair on the bib - if you have to have chemo for sure it is definitely worth getting your hair shaved, cropped or cut very short.

I had 2 different types of chemo, the first was FEC x 3 and then the second was Taxotere x 3. I managed to get through the chemo without severe side effects but did have the usual ones such as hair loss, loss of taste etc plus I had sickness with FEC and with Tax some of my toenails fell off but overall survived it better than I thought. However, what you have to remember with chemo is that the effects build up over time so by the time you have your last one your body is worn out and you feel very tired doing the simplest things. I could be putting my washing on the line and I would just have to have a sit down for a few minutes.

I think for now you have to get through the surgery, recover and then get ready to meet your new baby. Plan ahead now as much as you can and you are lucky to have your Mum and Sister to help you. Friends prepared meals for me. I worried about surgery too being pregnant but then realised I didn’t have a lot of choice. Once you have had surgery and your pathology results then you will find out more from the hospital.

It is not something you would wish for anyone to go through but you will come through this. I was dx in May 2006.

Take care and keep us posted. Good luck for your surgery on the 14th - will be thinking of you.

Love xxx

hi swissmiss,just wanted to send you a big hug,you are amazing ladie always the first to help xx

Hi Twoandabump

I hope that your surgery went well today. Please keep us posted when you are up to using the forum again.

For Drabble - hijacking thread now but hi Drabble. I wasn’t sure if you used the forum any more so was quite surprised to see your username. Hope you are doing ok. I know you are similar to me in that we are both er- but pr+ (it is unusual) so just wanted to let you know that I had my 5 year mammogram in October and everything was fine - onc is thinking of taking me off tamoxifen next year as I will have been on it then for 5 years. Just checking bloods for menopausal status - if still pre-meno I just come off tamoxifen. If post-meno then I will go onto something else but not sure what at the moment. Will keep you posted.

Take care - both of you. Love xxx

Hi Twoandabump,

Just wanted to wish you well following your surgery today, hope that everything went well. Best of luck also with the rest of your treatment and in the meantime, enjoy every minute with your new baby when s/he arrives.

I had a mastectomy with recon and level 1 axillary clearance almost four wks ago (at just over 8 wks pregnant) and am glad to say that it went really well and am making an excellent recovery. If it weren’t for the first trimester morning (all day) sickness and fatigue then I would feel even better! I hope that you will feel as close to normal as possible before your baby arrives.

Best wishes,

Px