Bleeding after using dilators

Hi Sarah

How are you? Hope you’re keeping well :-)

Just realised I hadn’t updated, so much has happened

Stent couldn’t be put in as the SVC has already closed over. So stuck with a bit of swelling, but no big deal really as my body has compensated by other veins expanding.

Unfortunately, I had my 3 month post treatment scan results the other week and whilst my pelvis is completely clear, it’s spread literally everywhere else. Lungs, liver, sternum, breast, neck etc. ugh.

Starting chemo again tomorrow and waiting on NGS results to see if there’s any markers they can target with immunotherapy… fingers crossed!! X

Yes sorry for the lack of information, I had radiotherapy. My consultant mentioned dilators right at the beginning of my treatment, but it was never spoken about again. Because I've only recently wanted to try to have sex with my husband due to just not feeling ready, it was was very uncomfortable, and I'm very worried that due to lack of information I've left it too late.

Oh Aquabambi 

I cannot begin to tell you how shocked and saddened I am to read your update…what a difficult outcome for you to be facing. 

I really hope that your markers come out as favourable for immunotherapy to be a good option for you-I’m just so sorry things have turned out like this. What chemo are you going onto next while you wait for your marker results to come through? It must really be a body blow for you, and I can’t imagine how hard this is. Please let us know how things are going if you can-rooting for you to be able to do this. Big hugs.

Sarah xx

Hi Bongo26 

I’m sorry that no-one brought this up again with you. If you’re not having sex regularly (and many ladies don’t feel up to this for a long time after treatment) then the dilators can really help keep things open and stretched.

Do you have a CNS ( cancer nurse specialist)? I’d be calling to talk this through with them to see if you can start this now. Explain that things are uncomfortable and ask if you should start using the dilators. I started with the smallest one in the set, and never managed to use the largest one, but felt that was ok, as at least it was helping to keep stretched in there.

If you have actually managed to have penetrative sex, things have not closed up, but if you haven’t had an internal examination recently then it might be useful to have this checked out. I hope you’ll let us know how you get on.

Sarah xx

Thanks Sarah - I knew it had returned as had a swollen lymph node on one side of my neck for a few weeks, but wasn’t expecting it to be everywhere else!

Starting Topotecan tablets tomorrow and then hoping to add in immunotherapy from cycle 2. Or if not eligible to add in Taxol & Avastin.

Feeling ok, just a little tired and some slight discomfort in my chest. Must say I’m not looking forward to being back on chemo and losing my hair all over again, but c’est La vie! I don’t have a choice!

Hope you're doing well xx

Oh, it’s a LOT. I don’t think we have any recent experience of Topotecan in the group-it’s about a year since there was a post about it, but unfortunately the husband who posted didn’t come back to tell us more about his wife and how she got on.

What shame to lose your hair again..but I guess we all do what we have to do. I hope it goes ok tomorrow and you’ll what options you have for more to be added in.

I’m doing ok thanks. Life seems to be a round of endless appointments right now for both me and my partner…but minor in the grand scheme of things. I’m being monitored closely right now after they discovered chronic kidney disease in a blood test in one of the follow ups from my stroke, but it’s ok-just repeated tests. I had a clear bowel screening test and next thing is a mammogram next week which I’m hoping will be ok. It just seems never ending, but nothing like you’re going through.

Sarah xx

Thanks for the advice, I'm going to ring them today. xx