A New Year and a new cancer. 😱

[GINI-54]

I was diagnosed with OC last January stage 2, I had the full debunking followed by 6 treatments of chemotherapy . At the end of the treatment my cat was at 8, fab news. They said they would not be doing a scan as they considered me cancer free. By the time I went to my 3 month check up in October, I was told that I had no cancer, yet they hadn’t done a blood test . I had started to have bloating and abdominal problems again which I told her about so she said she would arrange for a CT scan. My following apt was the first time I’d ever met my actual oncologist who told me the scan showed up laissions on my bones, she wasn’t too worried about it as the chemo can cause bone damage, but just to be certain they would arrange for a PET scan. I had that scan a few weeks before Xmas and this week I had my follow up appointment, seeing another new person and was told I have breast cancer now which has spread to the bone. They can’t cure me just manage the symptoms, they don’t know if it’s the ovarian that has spread to the breast or a brand new breast cancer so I have to have a biopsy this week so they can determine where it began. I’m in shock, I’m angry, and I feel let done. Surely after months of chemo this shouldn’t happen so quickly.

Is there anyone else here that has a similar problem?

Love and hugs to one and all, Gini. X

[Lyndy]

Hi Gini

That’s such bad luck...sending you a big hug.

It seems to me that you are dealing with two issues at once.. the secondary diagnosis and also the doubt you have about your original treatment and it’s follow up. I would urge you to find some local support..my hospital has a wonderful drop in Macmillan centre where you can talk through the issues you face and they support you to decide what next steps you might take. I know not everyone has this but it would be worth finding out if you haven’t already.

You have been left with many unanswered questions at a time when you must feel vulnerable.

I hope you get some answers and some support. Lots of love Lyndy xx

[GINI-54 in reply to Lyndy]

Thank you, I’m going to a support group this week run by the Macmillian nurses so I hoping that it will help me keep everything in perspective. X

[Irisisme]

This sounds terrible! As well as Macmillan, you could go for a Hospice referral - a Hospice is not (just) for dying in, they have given me 24/7 support and acted as an intermediary between Onc & GP - they offer free counselling, which might be of some help. I am registered and I am only stage 3c OC and not terminal. I would also speak with the Patient Advisory and Liaison Service (PALS) because you have been badly let down by NHS professionals by the sound of it and need better consideration from now on.

Good Luck Gini, I hope you find some crumb of comfort soon.

Iris xx

[GINI-54 in reply to Irisisme]

Thank you, I will look into that. Xxx

[lesleysage]

Gosh, everyone's heart will be going out to you as they read your post.

Have you thought of asking for a second opinion and/or ringing the Ovacome freephone (0800 008 7054) Support nurse, Anna. There is a 'Pinned Post' on 'Getting a second opinion' towards the top right hand of this page.

Warm wishes Lesley

[Jo-Jo1-UK]

Oh Gini, I am sorry to read your post, what a dreadful start to the new year. Hope you get on okay with your biopsy this week and you will soon have a plan of action from your onc. Like Lesley says a second opinion would be good, I had one at The Christie and it was quite easy to arrange. Take care, Jo xx

[Lizchips]

I don't trust pet scans much I'm very active and I've been injured a lot. My bones light up like the forth of July. I can only do cat scans. My Dr sent me for two bone biopsies, both negative. Now that she gets me we've reached an understanding and it's only cat scans. It's scary , stay positive and we will all be praying for your cancer free diagnosis. I was diagnosed in 2014 doc wanted to do ca125 every 6 mo, then once a year. I said no and I will see you every 3 months. I don't know if you are in US or UK? We have so many different medical programs. No matter I will pray for you. Liz

[IrishMollyO]

Hi Gini

Please don’t feel alone in this as there are women who have been diagnosed with OC and BC. I am one of these women. I was diagnosed with stage 3c high grade serous PPC in 2011 and treated with Carboplatin and Taxol . Was NED by end of treatment but recurred in Peri Aortic lymph nodes in 2015 . Stable by end of treatment . Last November during a routine visit to a new GP I ended up being referred urgently to the Breast Clinic. A bone scan followed which was clear . However biopsy showed up Lobular Breast Cancer which I was assured was a Primary Cancer and not a secondary. I had a mastectomy on 4 Dec and now await an appt to see what the next treatment will be. I hope that yours will also be a Primary and that you will be treated accordingly. It’s difficult I agree to get your head around two separate cancers but I stayed as optimistic as I could and focused on the one I am dealing with right now. My achy bones have been diagnosed as arthritic changes.

I have been reading the good advice on the other replies which I thoroughly agree with. I would suggest that maybe you have your scans reviewed in another hospital . It’s always good to have fresh eyes having a look and you can do that without having to move from your own hospital. Meanwhile I wish you all the best but please let us know how you get on. Take care.

XXX💚💕

[trg3]

Hi i was kind of in a similar myself last yr in january i had a biopsy taken and was told i had bc and i had a collapsed lung with plura effusion in it i was told as i had breast cancer that it looked like i had cancer cells in lung &tummy area so they told me i had secondary which is stage 4 i went along with that i saw a geneologist after that and had a gene test done which came back positive and i carried the brca2 gene i was also told i could go on and get ovarian cancer nxt that was in march after my 3rd chemo and a scan it was discovered i had a mass on my right ovary but the hospital said it was a mass ,in july i saw a gynaecologist i was getting surgery to remove my ovaries&tubes as a preventative that didnt happen as my cyst turned out to be cancer in the ovary so i had to have a full hysterectomy done in september ,my cyst turned out to be a massive tumour which had spread everywhere i also had lots of spots on my bladder &bowel most of the cancer was removed and just now im having chemo for the ones on my bowel my oncologist thats treating me just told me in october that all my samples were retested in the lab again and now turns out i didnt have stage4 bc but stage 2 so my oncologist back then had given me a wrong diagnoses right up till may last yr they said that ,thats still dormant but my ovarian cancer is stage4a which i have been told i have had both from day one but this one was dormant and was never picked up i feel so angry about this .I get chemo every 3wks and one of my drugs had to be removed as after 1 session it made me so ill that i ended up in hospital in november for 5days i recovered from that just this wk i was told im super sensitive to chemo i do know my chemo is working was told that this wk by my oncologist so have 3more to go then its just matinance with the avastin so im glad its working hope everything works out for you

[GINI-54 in reply to trg3]

Hello,

I’m so sorry to hear what you have been through and are still battling with, it’s unbelievable that they can make such mistakes. I too have the brca gene 1, which they believed caused my ovarian, and they had said I should have my breasts removed to reduce the risk of getting breast cancer. I had a mammogram and ultrasound the end of November and was told my breasts were fine, so the news of stage 4 breast cancer this week was a huge shock. I don’t understand how it didn’t show up earlier or on the mammogram.

I’m pleased your Chemo is working. Your story has given me hope to remain positive. We have been dealt a raw hand with the brca gene.

Take Care of yourself xx Gini.

[Hidden]

What a horrible end of the year for...

I had a not dissimilar experience to you, though much less devastating, and the other way round. BC dx 2008; OC dx 2010... almost to the same date. It took them a little while to establish that it was a separate primary. I'm BRCA-. I had had a mammogram less than 6 months before the BC dx.

I started by thinking your monitoring regime sounded a bit laid back, but then I see you had recent tests which showed nothing. It might be worth asking for the earlier scan reports to be reviewed by a different "reader" to confirm that this was not something missed. But this is a really horrible and insidious disease.

Don't despair: there are advantages to being a bit of a medical mystery.

Would you consider getting a second opinion after they come up with a treatment plan?

My mother is coming up to 21 years after stage 4 BC and treatments have significantly improved.

Keep us posted and all the very best. x