Newly diagnosed seeks advice

[Susie_50-s]

Hi. I joined this site on Friday after just receiving my diagnosis of serous adeno carcinoma. It has been a rough journey just to get here. I just wondered if anyone could tell me what to expect next. I am waiting for an appointment with the specialist who will explain my treatment plan. I was told surgery was not best course but to start chemo. I feel empty, in shock and scared.Thanks

[CallmeMum]

Hello lovely and welcome,

Most people start out with chemo then go on to have surgery, depending on how well you respond to treatment will be what your oncology team decide however if your ever unsure question it all write a list of questions you want answered you will also have a CNS (Cancer Nurse Specialist) who will be able to guide you through this journey and of course there's everybody here and anybody you may have supporting you. My special person was diagnosed in March 2015 and told 6 months with no chemo and no chance of surgery after 6 months of carbo/taxol 18 treatments of avastin a Hysterectomy a reoccurrence in August 2016 and 4 treatments of Carbo/Gem she is now classed as dormant she has the onc again in April so we'll see what the next stage is from there if her CA125 marker is still low then we'll look at taking her off clinic side depending if they give her another scan or not xxx

[CallmeMum in reply to CallmeMum]

Sorry I meant 6 months with chemo bloody predictive text! Xxx

[Susie_50-s in reply to CallmeMum]

Thank you. I am still trying to take all this in. From reading posts...I now know there is light at the end of this long tunnel.

[CallmeMum in reply to Susie_50-s]

There is always light as long as you have support which you do have here no matter what xxx

[Annr5h]

Hello Susie, sorry to hear your in our club. We all know how you feel as we've all been there. Normally you'll have chemo first then halfway through your chemo treatment they tend to give you surgery full hysterectomy. But everybody is different. You'll be fine once you know what the treatment plan is. On this sight are some lovely ladies that will talk you through or give you any advise you want, as I say we have all been on the journey.

I wish you well with your treatment and hope you'll keep us updated.

Hugs Ann xx

[Lyndy]

Hi Susie

Welcome and sorry you need to join this club. The time around diagnosis and before treatment started was probably the worst bit I have encountered to date. Once treatment starts and you get into the routine it is strangely reassuring! Don't be hard on yourself this is a huge thing to get your head around..you are bound to feel knocked for six. Concentrate on one day at a time- do something nice for yourself everyday and let yourself off tasks you don't feel like doing.

You will get through this!

Lyndy xx

[fluffycloud]

Hi Suzie, I had 4 cycles of chemo before my operation in 2013 so i think it depends on the individual we ladies are so different and react to surgery and chemo in different ways.Trust the oncologist they know what they are doing, and once you get started on treatment you will not feel so scared as they are being pro active,take care. Pam x

[Sunfleury-UK]

I would strongly recommend Target Ovarian Cancer's booklet, "What Next?", it's specifically for when first diagnosed and can either be downloaded from their website or a free copy can be ordered which will be sent to you.

As well as the medical information it also includes advice, suggestions and signposting. Wishing you hope and strength, Sxx

[Cropcrop]

Hi susie, welcome to our lovely family, you're most welcome even though we're all sorry you have had to join us. It really is a scary time but once your plan of action is sorted you will feel as though you can start to take a little control back.

I'm seemingly one of the odd ones who had surgery before any chemo was administered but everybody is different.

Have belief and trust in your medical team they will do their very best to do what's right for you, don't be afraid to ask as many questions as you need, if you don't understand anything ask for it to be explained. One thing I always say is to try to avoid looking at statistics on google, you may only scare yourself with information that is potentially out of date and in some cases just wrong. The 'what's next' booklet that sunfleury has recommended is really good.

We all know how you feel, the 'C' word is damned scary and you never think it will be applied to you but here we all are at various stops on the OC bus route so just ask if you want to know anything at all.

Sending big hugs ❤xx Jane

[Biscuitqueen]

Hello and welcome! This is a scary time for you but I have absolutely no doubt that the amazing ladies on here will be a great source of comfort and guidance

Chemo works well with serous adenocarcinoma. As others have said - everyone is different...it depends on the Stage and where the cancer is. Make a list of questions you have and make sure they get answered at the appointment - we kept a notepad on the coffee table and wrote down even the smallest question when it randomly popped into our head!

It is overwhelming but the support you get from this amazing community is like having an army behind you. Do you have someone to go with you to the appointment? My Mum was overwhelmed at her initial meeting and needed me to go over things again afterwards.

Once you meet with your medical professionals, you will be in a stronger position.

Stay strong,

Love and hugs ❤

[Spencer2016]

Susie- I was in your same spot this past Oct. And I remember like it was yesterday the shock and fear of it all. I too was not in good position for surgery. The plan for me was 3-6 cycles of chemo (3x weekly per cycle), then evaluate. I was scanned after the 3rd cycle and the chemo killed or shrunk much of the cancer. I had one last dose for good measure, then surgery. The surgery involved a hysterectomy plus (removal of gynocological parts such falopian tubes, ovaries, uterus, omentum etc..) and what they call debulking. This is where the gynocological surgeon removes as much of the visible cancer as possible. This part varies depending on where it is. Then, more chemo to "mop up" aka 💥🤛🏻 any remaining microscopic bits. (I am in this phase now).

I won't lie, its not been easy. But- my doctor felt very good about my surgery and my response to chemo so am hoping for good news at my next scan.

There are a few words of advice I would give you at this moment-

1. Be sure you have a gynocological surgeon perform any surgery on you

2. Please try not to google. Its not all accurate and will not be helpful or comforting. And it won't really answer questions so just stop yourself.

3. The lesson I'm still working on, try to stay focused on whatever part of your treatment plan you are currently in. If you take this day by day, breathe and don't get too far ahead of yourself, it helps.

4. Use the wonderful women on this forum in addition to your friends and family. We are all going through it. Many much further along and with amazing wisdom and council. Many new like yourself that you can lean on to go through it together and all of us to help lift you up when you feel scared or alone or just need to vent.

I am so sorry you are one of us. I wish you all and love and strength on your road back to healing. Be kind to yourself and please do come back often.

Best,

Anne 🌺🌼🌸

[Spencer2016 in reply to Spencer2016]

Made one goof- surgeon should be a gynocological oncology surgeon with extensive ovarian cancer surgical experience. This is essential. 👨🏼‍⚕️

[Katsmum]

Hi Susie - I second everything that's been said and wanted to add that chemo is not like it was years ago and is easily do-able for most people. Take it step by step and be kind to yourself . Love and hugs in support! ❤️☺️

[January-2016-UK]

Hello Susie, welcome to our site, you will find lots of friendly people here who have been through this stage you are at now.

On a practical side, take a notebook with you to your appointment so you can write anything down, such as instructions, etc. If you have any questions before you attend, write them down as well as I find I often forget to ask something during the consultation.

I had four chemo before my operation. There are various reasons for having chemo first, either because the tumour needs shrinking to make the operation more likely to be successful; there may be lots of small tumours dotted around which the chemo will disperse or sometimes it may be the preference of your oncologist and / or surgeon. You could ask why you're having chemo first.

There are many drugs around now that prevent the dreadful sickness chemo meant many years ago. There are side effects it is true, which most of suffer to a greater or lesser degree, but it is do-able, you will come out the other end.

When is your appointment? I hope you don't have long to wait, as it can be a very anxious time right now.

All the best!

[Hidden]

Hi Susie. For me it was hysterectomy first. Then 3 rounds of chemo. Then another op to remove left-overs. Then 3 more rounds of chemo. That was 5 years ago. I have had a recurrence in the meantime but I'm in remission and fit & well. Best wishes. Pauline.

[IrishMollyO]

Hi Susie

I hope I have understood your post correctly but I didn't think Adenocarcinoma was connected with Ovarian cancer which is what this forum is all about. You didn't say what area was affected. I just looked it up to get it clear I'm my own mind. It mentions a few areas but not the uterus or ovaries but I am not a medical person so could be totally wrong. Also I understood that you were told surgery was not an option and that you would be treated with chemo. That can happen as in my case 6years ago for primary peritoneal Cancer . I responded very well to chemo and remained disease free until last years recurrence in lymph nodes. If you could give a little more detail there may be others with the same condition who can help. If an operation is involved you have got lots of good advice from the other ladies who had that experience. The very best of luck with everything

XXX

[IrishMollyO]

Hi Susie

Apologies but have read a bit more on the subject and now realise there is a connection. My main aim in replying to you was to reassure you that if it is just chemo then that also responds very well as in my case. If an operation is involved the other ladies are tops at giving advice. Take care

XXX

[Barlow1951]

Hi Susie,

I had Total Abdominal Hysterectomy first followed by 6 cycles of Carbo/Taxol to mop up any remaining cancer cells as mine had spread to 2 lymph nodes. My diagnosis was high grade serous carcinoma stage 3C in Sep 2015 and I have now been NED for nearly a year. As other people have said, the treatment plan depends on location, size, type of tumour etc and will be decided on an individual basis. Your team will work out a treatment plan that is best for you taking everything into account and once you are started on it, you will feel that something is being done and be less scared.

Do hope you will soon know what they are proposing for you and that all will go smoothly.

Best wishes,

Barbara

[Susie_50-s in reply to Barlow1951]

Thank you