Hello - newbie

Hi,
Just noted this part of the forum was here after posting on the new diagnosis part.
I’m 30 and now 15 weeks pregnant. I was diagnosed with bc after noticing a lump and having a biopsy. I had a left mastectomy last Thursday and have just had the drain removed. I will get the diagnosis next Monday as to what it is I am actually dealing with.
Initially it was the one lump, but after closer scruitiny of the mammogram calcifications were noted. I could either of waited up to another month for further tests or have the mastectomy. Being worried about the stress I opted to have it removed. Had a scan the day after the op and baby appeared groggy and possibly a lit bit peeved.
Once I have the diagnosis they will proceed with chemo due to my age and then possibly radiotherapy once the baby is born/induced.
I had a complete molar pregnancy last year, which they have informed was not related to the breast cancer.
At the moment I am just trying to recover from the operation and get back on my feet. The drain came out yesterday, which I am pleased about.
I was very reassured about the chemo after reading a Lancet article they pointed me in the direction of, which was referred to in the Guardian. Meeting my gynae consultant tomorrow to discuss what happens next with regards the pg.
The two things just had to come together didn’t they?!
Sigh.
Hope you are all okay xx

Moonandmoon

It sounds like you’re going through a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime if it would help to talk things through do give the helpline call. The staff there are able to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Thank you Sam.
I will try and call the helpline next week.
Maria

Hi Maria
Just found your post. Sorry you haven’t had many replies. Don’t come on here that often myself any more - the new format of the website sends me in a spin - but do check in from time to time.
By the sound of it you have had a very tough year or so. Please forgive my ignorance but I have no idea what a molar pregnancy is. It is hard enough to be dx with breast cancer anyway but when you are pregnant at the same time it is a truly awful experience and can be incredibly isolating. There you are looking forward to ante-natal classes and suddenly you are thrust into the world of cancer, surgery, chemotherapy, radiotherapy! It isn’t meant to be like this is it.
If you read through old posts on here you will find several ladies have been pregnant whilst having chemotherapy at the same time. Obviously you will need the results of all the tests carried out first so that you know what you are facing. Your Obstetrician will need to liaise with your Oncologist but remember one specialises in babies the other in cancer. They will both need to work together in both you and your baby’s best interests. Although the numbers of women dx whilst pregnant are increasing, it is still very rare and some hospitals may never have come across this situation before. If you feel any of your medical team are out of their depth then you must get a second opinion or ask to be referred to a centre where they have dealt with pregnancy and breast cancer.
Please don’t let this disease rob you of the chance to enjoy your pregnancy. You will find that your baby will give you the strength to get through any treatment that is necessary. Do you have much support around you at the moment and for when you have any treatment and after the baby is born?
Please keep posting to let us all know how you are getting on. I will certainly try and pop in more regularly to see how you are both doing! I was dx whilst pregnant in 2006 and my baby is now 6! Take care. Love xxxx

Hello

Three years ago (almost exactly) I was dealing with the same thing…my daughter is now 2 and a half and I am getting along well.

I was diagnosed with BC at about 14 weeks pregnant on 2nd October 2009. I had a lumpectomy a couple of weeks later and the results were that I had a grade 3, stage 1, triple negative cancer roughly 2cm in size.

I had 6 cycles of chemo (EC if I remember correctly - FEC without the F!). My first one was in December 09 and I had 4 more, every 3 weeks, until I had baby. I had one more chemo a month after her birth and then radiotherapy a couple of months later. I don’t take any ongoing medication but I do have regular mammograms and an annual breast MRI to keep me as safe as possible.

Eva, my daughter, has no signs at all of what she went through whilst in my tum. In fact she was born with more hair than me and has met all of her milestones on time or early. Her speech is advanced for her age. Might sound like I’m bragging but I’m just trying to reassure you :slight_smile:

As for the birth, I was booked in for a c-section at 36 weeks but the obstrician said that if I was in labour naturally she would rather I gave birth naturally due to blood counts and chemo etc. This is why I was booked for a c-section - the birth had to be a certain number of days after my chemo to let my blood counts return to normal(ish) but couldn’t be so late that it delayed my next chemo by more than a week as this might have reduced its effectiveness. With the obs support I had reflexology to try and start labour the day before my planned c-section and turned up for my c-section in labour. I had an epidural as soon as I could so that I could rest through the labour and gave birth naturally when the time came. I was so thrilled to be in labour that I was going to go without the epidural but my energy levels were low after the chemo and I decided I’d rather save the energy for pushing and cuddling baby afterwards than going through the pain bit!!

It was difficult afterwards in terms of caring for baby but I accepted all the help I could get and mostly stayed in bed having newborn cuddles and let other people worry about cooking and cleaning - take all the help you can get so that cancer doesn’t take away those precious moments.

My contravertial bit is that I chose to breast feed (or try to). I contacted La Leche League who provided me with research papers etc to do with how long medication stays in your system. I then discussed this with my obs who said she would support me ‘off the record’. It meant that I could breast feed from the birth to the point of the next chemo. After that chemo, which was my last, I had to express and throw away the milk for 2 weeks before I could breast feed again. Baby had formula during this time. After the two weeks had passed the chemo drugs would be clear of my system. The only issue was that my body had clearly decided it had been through enough and didn’t produce enough milk to satisfy my baby. At least I am happy that I tried and that this trying didn’t hurt my baby. Not everyone wants to breastfeed anyway but I wanted to tell you this so that you knew you might have options - even with one breast. If you search ‘breastfeeding whilst pregnant’ you will probably find my old thread. I wouldn’t have tried this if I had more than one chemo cycle to go through but for the sake of one cycle couldn’t get my head around giving up what could have been breastfeeding for a year for the sake of a couple of weeks.
Anyway, I hope that my story helps you in some way. At the time there were three of us (ladies with breast cancer whilst pregnant) going through the same thing at the same time. I found the support really helpful so visit this site now and again to offer that same sort of support to others in need.

Keep well, stay strong and courageous, and remember that although cancer might take away many of your choices in pregnancy and birth, it doesn’t have to dictate everything xx

Hi Ohbaby

I have had a search around and found this, is this the thread you’re referring to for Maria?

breastcancercare.org.uk/community/forums/breastfeeding-chemotherapy

Jo, Facilitator

Hi
Reassuring to read your story ‘OH BABY’ about how your little one is doing and meeting her milestones. This is my first posting since joining in June as everything has been such a whirlwind of appoinments and trying to keep routines as much to the norm as possible for the little ones. Just wanted to say I opted for chemo first and have just finished 3 rounds of EC and 3 rounds of Docetaxyl (Taxotere) to which there is currently very limited data on regarding its use in pregnancy, which as a former mammographer truly concerned me. However, after a little reading around myself, being presented with research papers off my oncologist about baboons!! and the perspective off my obstetrician that…‘many drugs say don’t use in pregnancy’ because it is not ethical to use us for clinical trials or tests etc I decided to go with it. Anyway, I had another growth scan on baby today (17.10.12) and babe is bob on for dates. No anomalies ever seen and weighing in at an estimated 4lb 9oz currently!! I have my mastectomy and axillary clearance on the 30th October at 34wks and 3 days, a baby scan again on 17.11.12 two weeks after surgery and then with the support of my obstertician, the run in to a natural birth EDD December 8th. My surgery will see if I need radiotherapy, which will start in the new year if I do and the same with the Tamoxifen, that will be started then too as the Oncologist has said I may as well make some use of the other breast (but having boob fed the other two am secretly looking forward to bottle feeding the third…). The Chemo wasn’t too bad. Had one episode of extreme nausea following my first EC, but once my antisickness drugs were changed (cyclizzine worked for me) had no other episodes. The Docetaxyl(Taxotere) left me washed out for a couple days two days after treatment each time but otherwise ok. I had ice gloves and boots with that which stopped my nails loosening and coming off and dark nail polish prevented them discolouring too. After each chemo I had a neulasta shot to boost my immunity, again the first one left me feeling like i’d been beaten with a bet but after that I was ok. I too managed my chemo whilst running around after other children, one 2yrs 10mnths the other 19mnts on diagnosis. If you have a good support network around you use it. And when you have baby get out to the post natal groups too. Its the friends i’ve met since having my children, along with my close family, who have helped me through this so and I belive will continue to do so long as I need them. Thinking of you.x

Yes Jo, that’s the one. Thank you for finding it.

MUMEMMA, I’m sorry to hear that you are also going through this. I hope you’re finding the board helpful even if you aren’t always able to post. Your team sound really supportive and I’m glad that they’re being open minded about finding ways to treat you and still letting you have choices. One of the hardest things I found was having decisions made for me - although I was always aware I could refuse XY or Z, I also knew that I was being asked to accept those treatments because they were what the team believed to be best for me and hence couldn’t really say no. The other thing I found most difficult was asking for help but again you seem to have this covered. All I can say is that you seem to be doing really well from what I can make out in your post and I’m really happy to hear it.

I still hear a lot of ‘you must be really strong as I couldn’t deal with that!’. They’re right iin one way - WE ARE ALL really strong to deal with this. What they don’t understand is that we have no choice but to deal with it: the alternative isn’t worth considering.

Stay strong and positive and good luck with the rest of your treatments.

Hi ladies,
Sorry I disappeared off the radar for a while. I’ve had my diagnosis now and been trying to get my head round everything.
I had a ductal breast cancer, grade 3, HER 2 positive and it was about 5 cm. Thank goodness I went with the mastectomy instead of waiting for more tests the supsicious areas that were identified were malignant. Out of the 4 lymph nodes/vessels removed 3 were checked whilst I was under and were clear. After the op the remaining one was found to contain some malignancy.
I proceed with FEC-T chemo in 2 weeks. It will be provided every 3 weeks. Once the baby is born, I’m not sure of the order but I will have surgery to remove the remaining lymph nodes, radiotherapy and receive herceptin for the HER 2 aspect.
The hospital team are very good at the Royal Gwent and all teams seem to be liasing with each other about appointments. Because I couldn’t cope with trying to sort out appointments with all this. I have my 20 week scan 5 days after I start chemo, but am seeing obstrecian and haematologist before chemo and secretly hoping for another scan.
Thank you for letting me know about what’s happened with you ladies. Glad little ones are doing fine
I’m getting the ‘you’re being so strong and brave for your baby.’ People keep telling me what a great mum I was for having the mastectomy. I know I didn’t have a choice but to have the op because I would have got extremely stressed waiting, which could have resulted in miscarriage. Also, I am crying and getting upset but I need to try and survive this, I can’t just let it wash over me. I’m a fighter and I’m not goint down without a fight. I want my baby, my happy family and I want my life back.
Sorry that was a kind of power rant there. It’s just I don’t feel I’ve got any choice in this.
Hope you are all okay xx

Sorry you’re having a hard time. You do have to give yourself time to get your head around it and it is still all very new to you. I can honestly say that I still think about what I went through almost every day - not in a bad way, it just feels like some sort of sureal dream/nightmare that I can hardly believe I went through. They were able to remove my cancer with a lumpectomy but I turned out to be a BRCA1 carrier and have a 30% chance of the cancer returning. For this reason I will probably need a double mastectomy for preventative reasons in a couple of years time (apparently the chemo should ‘cover me’ for 5 years) and I hate the thought of more treatment.

As for the power rant - they help sometimes. I have a t-shirt that I wear sometimes that simply says ‘Survivor’ on it…I wear it when I need reminding of the strength and courage that I know is in me (even if sometimes I struggle to find it).

I don’t log on to this forum that much now that my treatment is 2 years past. However I will try and log on more frequently so that I can try and offer support as there don’t appear to be that many ladies actually going through this at the moment.

Take care x

Mumemma - hi and welcome to the forum although we both know we would rather not be here in the first place. I’m glad you have been able to post and tell us your story and let us know how you are getting on. I’m also really pleased that you feel a bit more reassured from reading Oh Baby’s posts.
I think any Onc/Obst would prefer a mum in this situation to have a natural birth rather than a C-section because of risk of infection and complications caused by chemo. Because I was at a later stage in my pregnancy when I was dx (30 weeks), I had surgery first. My hospital then tried to induce me at 35 and 36 weeks but my baby was staying put. At 36 weeks and 6 days I was booked to have a C-section. However, on the morning of the C-section the Dr tried one last time to break my waters and it worked and my baby was born literally one hour later! My Onc was worried that if I had a C-section then chemo would have to be delayed possibly for a bit longer whilst my wounds healed. He gave me a 12 week window from date of my dx and then I would have to start chemo. Because of having a natural birth there were no more delays and I started chemo 2 weeks after baby was born. So from surgery to starting chemo I just sneaked in at 9 weeks.

Oh Baby - its good to hear that you and your toddler (now!) are doing well. I think it is reassuring and encouraging for new mums in this situation to read your story and for me to say I can’t quite believe how fast time has gone and you are almost 3 years on from the horror of your dx. I fully understand what you say about the thought of more treatment for the preventative mastectomy - I find it hard enough going to the hospital just for a scan/check-up as those dark memories come flooding back. I know you will find the strength to get you through another surgery and as you say the alternative is not worth considering.

Maria - you are having to come to terms with being dx with this dreadful disease and because you are pregnant at the same time you have hormones flying all over the place and it is still very early days for you and very raw. I think it is better to cry and get it out of your system rather than bottling things up because that would be no good for you or baby. You have your pathology results so now know what you are facing in terms of treatment. I’m glad you are happy with your medical team because you need to have confidence in them. If it helps, I had a Grade 3 dx and was also Her2+ so had herceptin.
Hope all goes well for your surgery and scan Mumemma and for you Maria as you start your chemo. Will be thinking of you. Post when you can to let us know how you are doing. Love xxx

Hello ladies,
How are you all doing?
Saw baby at 18 weeks and it seemed find. Started chemo yesterday - feel like I’ve got a cold but temperature isn’t up so it must be the chemo.
Got my 20 week scan next Tuesday - if everything is okay there then I will feel a bit more comfotable about the chemo (I hope). I was always going to be worrying about this pregnancy.
xx

Hi Maria
Thanks for keeping us all posted.
Hope your 20 week scan went ok and that you and baby are doing as well as can be - its really not meant to be like this is it - oncology one week, maternity the next. I had Fec x 3 and Tax x 3 but when I was having the Fec I used to get bright red rosy cheeks. People who didn’t know about my dx would say I was looking really well. Little did they know it was the toxic glow of chemo. I think of you because it is roughly about the 20 week period of pregnancy when you should be starting to bloom but you may have the toxic glow of chemo instead. Will you be having a scan after each chemo? I’m sure it would be reassuring for you if you could.
Take care and keeping posting when you can. Love xxx

Hi Swissmiss,
It’s definitely a case of balancing both sets of appointments. I have been getting a toxic glow from the FEC yes. People kept saying that I looked flushed. I was like it’s probably the chemo.
I should be having a scan roughly after each chemo - it’s a once a month plan with obstetrician. However, I had a check up with the midwife this week and she said that any time I was feeling low, they could come out and use a doppler for me to hear the heartbeat. Starting to feel movement now so that should hopefully be a reassurance when I go in for my next lot FEC on Thursday.
Hope you are okay xx

Hi Maria
I hope you are ok and keeping things together. You sound like one hell of a lady. I was diagnosed last Thursday at 24 weeks pg with baby number 4. I have my big reveal of path report on Thursday so will know more then. I’ve read your story and I have every fingers crossed for you, success in your chemo and safe delivery of bubba. I am in a confusing time at the mo, I know it will get better but my original doctor was conident of a treatment plan similar to yours whilst my obstetrican wants to get bubs out at 28 weeks! As I say, Thursday will make things clearer!
How many weeks are you now, I think we are probably quite close in weeks.
Take care

Eva

Hi Moonandmoon glad things are going ok with treatment and baby. I am 20 weeks pregnant and was diagnosed Monday although getting my full results this Tuesday. The only thing i know at mo is that i have to have surgery so no doubt masectomy which im more than happy having infact they can take the pair lol, i will also need chemo and my lymph has tested positive. Has been a very emotional time and was in tears earlier, its just the un known i think and wanting them to start treatment asap as all this waiting around ith a bad boob is making me more anxious, just want the damn thing off.
So good to see lots of diferent positive posts xxxx