Hello all, first post for me in this forum and I’m hoping you ladies will understand my ‘issues’ a bot more than maybe other posters I have encountered on the other forums areas.
Was diagnosed with DCIS 4 days before my 33rd birthday in August. This was two months after my sisters diagnosis of invasive cancer (now stage IV - spread to her bones) and nine months after my dad died of liver cancer. To say it has been a hard couple of years since my dads diagnosis would be an understatement! My gran also had breast cancer in her late thirties - my sister is 37 so I think the chance of my having a gene mutation are quite high.
Had a WLE on 21/09 and going back for follow-up this tuesday. I know I am ‘lucky’ in that so far mine looks to be only DCIS (stage 0 - hasn’t spread) and I probably won’t have chemotherapy. Next steps are likely to be radiotherapy. I don’t know where I stand re hormone therapy.
Thing is - my main concern is about the possible genetic issue and what this means in terms of my future health and having a family of my own. Have been with my lovely partner for 10 years and the thought of not being able to have children is just awful. Not necessarily that my fertility will be impacted - it shouldn’t be if no chemo and no hormone therapy - but more the moral risk of passing a manky gene on. Obviously with my sisters situation it is also difficult not to think that will be me one day - she is only 4 years older than me.
Urgh - I just have all this additional crud going round in my head. Family keep saying to just concentrate on now and what the next steps of treatment are but it is not that easy to dismiss the ‘bigger picture’ worries about kids / recurrance. They also don’t seem to understand that the possibility of genetic testing is something I will have to talk about at my appointment on tuesday - it is a ‘now’ issue for me and the implications of a positive result are really quite serious!!
Hiya Brady,
Interesting to read your post as its not dissimilar to my situation. I am currently undergoing genetic testing due to family history.
My nan had breast cancer and my dad died of pancreatic cancer at 44. I was referred to Addenbrookes at my request to look in to this as after some research there ‘could’ be a link via the BRCA2 gene. The one thing my consultant did say to me was its less likely my cancer is genetic due to the fact i am not triple negative (i am ER and HER2 +ve).
If the genetic issue is playing on your mind its worth discussing, and then its really up to you if you want to proceed. If there isnt a strong enough link they wont do the genetic test. The have a score based system (well they did for me) as to whether they proceed or not.
If they do test, they cant test for every single gene. They tend to test for BRCA1, BRCA2 and P53. I haev been told the results take 10 to 12 weeks to come back. As they cant test for every single gene abnormality it may come back negative for the above but could still be a genetic issue that is unknown or not tested for. For children in the future i was told if i am a carrier there is a 50% chance my child could inherit the gene. (if my partner isnt a carrier too).
It might help to talk to someone else outside of your appointment. I called the National Hereditary Breast Cancer helpline to discuss my case before pursuing it with my hospital. That might be worth considering.
I have had chemo - but prior to my chemo i was offered fertility treatment and i now have 7 embryos frozen. So please dont think that if you do need chemo that the chance of having children is gone. It might not be the case. Reading the positive stories on here, some ladies go on to have babies even without fertility treatment so dont lose hope.
Does that help at all?
Feel free to PM me if you want…i dont mind
Rae
x
Thanks Raechi - appreciate the reply and hope you are having a good day
I do understand the uncertainty around genetic testing and initially I had basically decided that I didn’t want it because I wasn’t sure what it would add.
I suppose now I am conflicted between two issues -
My own personal health i.e. if I am a gene carrier then I could look at bilateral MX etc as a risk reducing measure. Thought of that terrifies me but if I am told I have an 85% chance of a recurrance then it seems like a no-brainer to have all the risk reducing treatment you can. I know one of the risk reducing surgeries is to remove ovaries - so no kids. Which brings me to…
The ‘having kids’ issue. If I am a carrier then kids are going to be a whole different ball game. I have heard of pre-implantation genetic testing but I don’t know if that would be available and isn’t exactly how I’d hoped things would happen! Or the other option - just ignore the possible genetic issue and have kids anyway - but how the hell would I explain that to my kid later in life if / when they develop breast cancer. Did you have any of these thoughts before having embryos frozen?
In a way I would be so happy if there wasn’t enough of a family history to test as I would take that as there is nothing more I could do. I could try to live my life and have kids without feeling guilty or having this feeling of doom over everything. I think I do have enough family history though - sister and grandmother both in their 30’s, and my mum had a pre-cancerous condition in her ovaries.
Hiya Brady,
The genetic thing was something i thought about before freezing embryos - but as i said my consultant was pretty convinced that as i am not triple negative my cancer is more hormone related then genetic and my family history is a coincidence. I was the one that pushed to be checked as i think its carried down the paternal line.
My child if i am lucky enough to have them, may not inherit the gene. The saving grace, if i am a carrier the child will be monitored so it could be caught very early.
The ovarian cancer i think is more likely with the BRCA2 gene - so you would only know that i guess if genes were tested.
I can understand the dilemma you are in. For me, i want to know so i know what i am dealing with. Especially as i have had a mastectomy already. If i come back as a carrier when i have a delayed recon on my left side i will have a prophylactic mx on the right side…
I think talking to the helpline may be of benefit to you…they dont push you down any specific route but are really good as far as advice are concerned and are extremely knowledgeable.
Rae
x
Thanks Rae - it is really helping speaking to someone who is in a similar position and has the same sort of concerns.
I think I will call that helpline after my appointment tomorrow - I did not realise there was a specific ‘hereditary’ one until you said about it. Interesting what you say about your Consultants opinion re hormone / triple negative too. I know my sisters cancer is hormone receptive (thank god - means more treatment options as far as I understand) - don’t know about my grans.
As much as there is a part of me that wants to ignore it - I think ultimately (like you) that knowing what you are dealing with is probably preferable than taking your chances. I have neices and nephews and my decision will obviously influence them as well - and possibly improve their options re monitoring etc.
I think I am headed in the direction of being tested - I just don’t really want to admit it!
Thanks Rae - will let you know how it goes. Hoping Consultant will say no need for any further surgery and onto Oncologist re plan for radiotherapy.
I’m not sure if it is them or my GP that would need to refer me for genetic counselling / testing - hopfully I will get a clear answer on that tomorrow. I think I am going to ask for a referral for definate - it is only going to talk to someone and for all I know they will say I am not eligible for testing. I won’t know unless I speak to them.
Well my appointment went about as badly as it could have - I knew it wasn’t going to be good news when the breast care nurse came to get us and took us to a different room - everyone else before us just got called in by the consultant… was a bit of a giveaway.
News is that I have been upgraded to invasive ductal cancer - grade 3. The invasive bit was in the middle of the DCIS - surgeon said he they had got all of the invasive bit but the lower margin of the DCIS was not clear. Am going back on 24/10 for a re-excision and sentinal lymph node biopsy (there was a lot of talk about blue dye?) to see if it have spread.
I am absolutely gutted - and I think that might be the end of any pretence of being able to have kids. There was talk about fertility treatment / egg harvesting but I’m not sure what to think about that. I suppose if I have embryos froxen they could later be tested for a gene mutation but then I asked if it was hormone receptor positive and Consultant said yes. He didn’t elaborate on exactly what though. Regardless - I am assuming that means 5 years of hormone therapy for me. So even with fertility treatment and pre-implantation testing I would be at least 39 before even thinking about kids. That is a kick in the face for sure. Doesn’t help that my best friend is pregnant with her second. I am happy for her of course but I can’t help feeling a bit jealous of her happy life and lovely kids.
All I’ve got to look forward to is chemotherapy, hormone therapy, genetic testing - and if I’m really lucky, some IVF treatment.
Also terrified that it will have spread as based on my sisters diagnosis it’s not looking very promising to me. I know I have to remember that I am not my sister - but it is difficult to ignore the fact her prognosis went from “it’s the best type of cancer to have - you’ll be fine in a year” to “spread to your bones and is incurable” very quickly.
Oh - and I really wish I had asked about whether the cold cap is an option at the Royal Berkshire hospital. I know it sounds shallow but the thought of definately losing all my hair is not a happy one… I’d like to be able to try it at least.
Hi Brady, I just thought I’d say hello as I’m new to this forum too. I was diagnosed in July, started chemo in August and am half way thorugh 6 FEC-Ts, 3 FECs down and 3 Ts to go (which I’m a bit nervous about having read some other posts, though good advice in them too!). I’m 35 and was breastfeeding my baby son when I was diagnosed, I feel very lucky to have him, but very sad that I probably won’t be able to give him any brothers or sisters as I’m in for the 5 year long haul of hormone therapy too. I know it’s not quite the same, so I hope I haven’t upset you. I’m sorry about your news at your latest appointment, when I found out I spent the time until my next appointment listing questions to ask the surgeon. I haven’t had any surgery yet, as he wouldn’t operate on me due to the breast-feeding, so I’m due that, then rads once I’ve finished chemo. I have been using the cold cap with some success though, so definitely ask about that. I feel more like me with my hair, even if it is a bit thinner than usual Good Luck!
Along with the valuable support and information you will receive here I am posting a couple of links to some other BCC support services which you may find helpful, one being our ‘Younger women’s’ forums and information:
Our helpline is open 9-5 weekdays and 10-2 on Saturdays on 0808 800 6000 so please feel free to call if you feel like talking anything through, they provide a great listening ear and can talk you through any of the services/information in the link above
Hi Swoot - sorry you are having to go through all this too. I would be lying if I said I wasn’t a little bit jealous of everyone who already have kids at the moment - but of course I wouldn’t wish my unhappiness on anybody. As you say - be thankful for what you do have.
I know the stories you read about chemo are scary but I guess everyone is different and it will be what it will be. Do you know what type of surgery you are having? Encouraging news re the cold cap - I know it isn’t always effective but I’m sure it is worth a try. Just hoping that my hospital offer it - it seems some don’t.
Awww Brady, sorry the consult didnt go as well as it could have…
As you know i had chemo and lost my hair…(FEC-T was my chemo too). I have to say it was quite liberating…and it didnt bother me so much - but i know not everyone is the same. My hospital didnt offer cold cap, so unfortunately i didnt have that option…
My hair fell out 2 weeks after cycle 1, but the eyebrows and eyelashes didnt make an exit until cycle 5.
I also had a sentinel node biopsy. I didnt have blue dye but was injected with something radioactive - its the same op though. They take out the main lymph nodes and test for cancer. Both mine came back positive so i needed a full clearance…One thing with the blue dye - i was told all your skin may take on a blue tinge - so please be aware of that.
re: hormone therapy. I am ER and PR positive so will defintely need it. ASk your Onc if you really need to be on it for 5 years. I did some research and some ladies come off it after 2 years. I have mentioned this to my Onc and he seems to think this could be a possibility…(i’m 37 now with no children so really dont want to wait 5 years)…
Swoot - welcome to the forums, although shame its not in nicer cisrcumstances…Hope all is going well for you and your little one. Please dont be too scared of Tax… there was no sickness on Tax for me which was a huge bonus…
Am 3 weeks post my mx now and starting to feel more like me…(minus one boob)
Take care
Rae
x
Hi, and thank you for your welcomes and information
Brady, I don’t know yet what sort of surgery they are going to want to do on me, one of my questions for my next onc visit is when I go back and see the surgeon. So far the tumour has shrunk by about a quarter, which is encouraging, but I’m not sure whether that will have a bearing on what surgery they want to do… Perhaps you could call your breast care nurse and ask her whethre the hospital offers the cold cap? Then at least you know, and if they do and you want any info, just ask. FYI, while I have my head hair, most of my other hair has fallen out - most recently my nose hair(!) which is making me sniff quite a lot at the mo!
Rae, thanks for that reassurance. I’m really hoping that I don’t feel as sick on Tax as I have on FEC (ginger biscuits have been my saviour) but a bit worried about the aches that people have been talking about… And also I feel like I got to know what would happen and how I’d feel through my FEC weeks, whereas I’ll have to wait and see all the joys that Tax brings… What’s next for you?
Hey hon,
aches are ok to cope with as long as you have pain killers. Next bit for me is radiotherapy. Probably starting in the next couple of weeks.
Its scary moving from FEC to T but please try not to worry.
Any questions feel free to ask.
Rae
x
Swoot - shrinking by a quarter does definately sound promising but as you say, not sure how it affects the surgery options. LEt us know what the surgeon says though won’t you? I think I will try to call the BCN about the chemo and cold cap today. I have eceived a fertility leaflet saying I should get an appointment in the next two weeks. As I havn’t even seen an oncologist yet I feel like I am going into the fertility referral with no information. I assume I will have to have tamoxifen for five years - but no one has actually told me that.
Rae - glad you are feeling well after your MX and that you found the ‘hair issue’ ok. I’m sort of stuck between wanting to try the cold cap, and just biting the bullet and shaving it all off! I guess I should wait until I know when I am starting etc before I do anything though. I had also seen info about people taking a break from tamoxifen at two years - I think it is down to the individual oncologists standpoint though. If I am being completely honest I don’t think we will be having our own children regardless. The more I think about it the more I realise that I am a genetic disaster waiting to happen. I even started looking at adoption websites last night - but I’m thinking having cancer is not going to give me many plus points on the medical checks they do. I am also worried about the implications of having to inject myself with hormones to even try the fertility treatment.
I called this websites helpline today. I tried Macmillan first actually but they did not have anyone available to speak to me… which just made me even sadder!! The woman I spoke to at BCC was very nice though and I vented at her for some time. So long in fact that my stupid cordless phone ran out of battery and cut us off. I hope she doesn’t think I hung up on her! It was good to be abke to just get all my feelings out without fear of upsetting her. Spoke about my sister dying which is a taboo subject in the family. Talked about genetics / fertility etc. She obviously didn’t haveany answers for me but it was nice to have someone agree that my concerns are legitimate rather than just sweeping them under the carpet and putting on a false positive front.
Hi Brady, just wondered how you are doing
I’m glad you found talking everything through with bcc helpful. Did you manage to speak to your BCN and get any more info on chemo/cold hat/treatment? And have you had your fertility appointment yet?
I had my first Tax today, and so far feeling alright - just taking my pills when they told me to. Oh, and I had a bit of a lie down when I got home too
Hope you’re getting on ok, look forward to hearing from you.
Xx
Hi Swoot - I am ok, thanks for thinking of me. Hope you are still feeling ok after your first chemo?
I’m still just waiting to have my second WLE and SNB - I so hope my lymph nodes are clear but the waiting to find out is really taking its toll tbh. I had an appointment with the BCN yesterday to talk about op and chemotherapy. We did also talk about the possibility of coming off tamoxifen early to try for a baby - and having zoladex to try to protect ovaries during chemo. I am glad that there is a discussion there to be had about tamoxifen - she seemed open to the idea but I guess I need to speak to Onc to really know - obviously don’t even know my full diagnosis yet so trying not to over-think it just yet.
Did find out that chemo prob won’t start until december - seems like such a long time to wait. I had my first biopsy mid August - so tired of all the tests and uncertainty and just want to get on with it now!!
We have an appointment next week at fertility clinic - so we’ll see how that goes. I want to ask if they do offer us embryo freezing, would we be able to have pre-implantation genetic testing at a later date if I have gene testing and it comes back positive? I think that would encourage me to do it if they say yes. So many things to think about.
