This is my first post, so rather long. Sorry in advance.
May 2017 diagnosed with TNBC, had 8 rounds of chemo, lumpectomy and had a complete response. Still had to have 15 radiotherapy sessions.
While I was going through radiotherapy I started having water infections, after 2 months of antibiotics was sent for ultrasound, they found a mass in my uterus. 3 months later had a full hysterectomy and was told I had OC stage 3. To weeks later I went to meet oncologist to get a date for chemo, only to be told very aggressive and had secondary on liver.
Had to have liver biopsy to see if it was related to BC or OC , was told it was very unusual to have 2 primary’s within a year. Turns out it was related to OC. Started chemo ( Carboplatin and Caelyx) 2nd of August. Started to get bloated again and feel really uncomfortable. Told my oncologist and she said she thought it was fluid, she arranged for me to have ultrasound and to be drained the week after my 2nd chemo. So 30th July went to hospital only to find it’s not fluid but a number of cysts. Wasn’t told anything only that they couldn’t drain, so I’m in limbo again.
So that’s my story so far. I have been very positive and strong through it all, but this news has floored me. I know it’s only a few days but can’t find anything positive, keep getting knock back after knock back.
Any advice would be very welcome. So sorry for long post xx
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Kai-corie
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Hi , Welcome to this extraordinary band of teal sisters.I have no answers for you except to say keep positive and strong and always ask here about side effects etc and check in if you want a rant ,someone will know the right thing to say to make you feel better.Big hugs Julia x
Welcome to this site, though I wish you hadn't had to join it.
There are a number of us on here who had BC before our OC diagnosis. Mine was almost exactly 2 years to the day between the two. I too was TNBC. Have you had the genetic testing? If not, press for it. I’m not BRCA+ , but the combo of TNBC + OC is often associated with those who are. The info might help guide treatment choices and opens up clinical trials.
You’ve had an enormous amount of stuff to get your head round in a short time. Not surprising staying upbeat is difficult!
You tell the story as if it’s one thing after the other, and of course that is how you learned about each development. But I wondered whether actually all these things might not have been there all the time.
Because they tend to focus on one thing, they don’t look at the whole body and so don’t pick any other stuff up. A friend in clinic had brain mets, but because the OC standard is chest, abdo pelvis it wasn’t picked up.
My other thought if you feel they don’t know what to do with you is to ask for a second opinion. This is quite acceptable, especially for complicated cases. There’s guidance about how to do this on the Ovacome site.
Oh, and make sure to make a list of every question that occurs to you before each appointment and try and take someone with you to help make sure you get answers. X
Yes they said they thought I might have had the OC before the BC, they said they couldn’t give me taxol because although it had worked I’m my BC, it obviously hadn’t on OC.
I have had genetic testing 5 weeks ago, they said I should hear by the middle of September 🤞
My oncologist has been on annual leave but she’s back on Monday so she’ll probably ring me about what next.
I’v booked an appointment with my GP for Monday to ask him to refer me. I have been advised this is what I have to do to see a top London Doctor. I’m willing to pay for a consultation.
Thank you so much for your advice you have been really helpful xx
Building on Mac27-UK's reply, the London OC surgeon/consultant (& her team, of course) a number of us have found excellent is Prof Christina Fotopoulou at West London Gynae Cancer Unit (imperial.nhs.uk/our-service.... Do talk a second opinion over with both your GP & Ovacome Support helpline 0800 008 7054...and as Mac27-UK suggests, keep your list of questions going until you get your appointment.
I'm so sorry about the news that has been thrown at you in such a short time. I live in the US so can't recommend any docs there. But I do feel you should have a psychologist to speak to you immediately after such devastation. I was diagnosed with OC in Dec of 16, had surgery Jan of 17, went thru 2 failed chemos, 1 successful and was told I was cured in June 18. Couldn't believe it because I felt so sick and exhausted. 4 1/2 weeks later was told I had liver mets. Didn't get my counseling until I started refusing further treatment. They finally woke up. I'm so thankful I had this group or I would have lost my mind. I'm a very strong person and hid my pain very well. Stick with this group because they won't steer you wrong. I gleaned many helpful hints on care, weird things happening to me that medicals just shrugged at, and a very good place to rant about what is physically and emotionally happening to you. They understand. You don't have to apologize. They help. They love. They feel.
Welcome to this amazing support group but I’m sorry you find yourself needing us .
Did they say exactly what and where these’cysts’ were?? I think you should speak to your oncologists secretary and ask for an urgent appointment to discuss your concerns and treatment plan! Worry and waiting for a plan are the worst parts of this process!
I’m not sure where you live but definitely get a referral to one of the big cancer centres either Royal Marsden or the Christie.
I am blessed and so lucky that my local treating centre is the Christie. I do agree with such a complicated presentation you need to be seen in one of the centres of excellence!
Prof Jayson at the Christie is a leading oncologist and researcher in OC and as mentioned Christina Fotopoulou is a leading surgeon for OC so depending on whether you’re looking for further surgery or for other treatment plans and options will determine who you get your second opinion from although I do know either of the excellent clinicians mentioned would steer you in the right direction to the right clinician for you and what your OC needs to zap the beast xx
I’m so sorry you’re having such a bloody awful time
We are here for you whenever you need but stay positive that there are lots of options open for you
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