Oh no... Not again. : Hello everyone I read new... - My Ovacome

My Ovacome

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Oh no... Not again.

pants22 profile image
17 Replies

Hello everyone

I read new posts and questions every day and am amazed with the strength and wonderful humour of our club. Thankyou.

I was diagnosed stage 4 Primary peritoneal cancer in March... Ascites drained x 2, a bad reaction to Paclitaxol, chemo carried on just with carboplatin, lock down and debulking surgery in September... What a year. More chemo and then Avastin to continue...... Except, for me that was only the first course.... I now have a stage 3 tumour in left breast and metastases in axilla nodes. I go to my pre surgery assessment tomorrow for urgent mastectomy early January.

The cancers are unrelated and very bad luck for me. I am BRCA 1 and 2 negative but my oncologist is asking for further tests. My breast ca is HER2 positive but ER and PR neg.... I feel like I'm having a lifetime of bad health packed into a few months...and I can't seem to do things by halves... Does anyone else have any similar experiences? Can this year honestly get much worse for everyone?

Keep smiling ladies... Big pants on and Xmas just round the corner. Xxxxx

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pants22
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17 Replies

I am so sorry that you have a 2nd cancer to contend with, that really does seem so very unfair, I totally understand how you are feeling.

During my debulking the surgeon didn't like the look of my appendix and took it out, turns out it was appendix cancer, I am apparently one of 1 in a million people diagnosed, I was shocked that anyone could have two different types of cancer at the same time, at the time I was plunged into depression and was convinced that cancer was determined to kill me, what was the point of treating OC, if appendix cancer was present, however 21/2 years later I am still here albeit still having treatment for OC, but optimistic.

Good luck with your assessment, things can only get better for us all. Try to stay positive xx

pants22 profile image
pants22 in reply to

Hi Lyn.... Thankyou so much. I'm glad they caught your pesky appendix. I used to be an endoscopy nurse earlier this year and I remember whilst patients were having their procedures seeing on the screen how silly and unnecessary the appendix is. And I'm finding I'm not shocked/surprised how slowly the cogs turn in the clinical response to our cancer. I am more patient this time but still find I have to chase things up and remind consultants secretary's etc about things. I'm not shy about making a nusience of myself this time. Xxxx merry Christmas. Xx.

Lyndy profile image
Lyndy

I can relate to your description of having a lifetimes worth of ill health in a short period of time ... there were times this year when I felt that too. All you can do is keep plugging away at the treatment. It does seem very unlucky if these are two completely unrelated cancers but there are so many genetic factors.. it may be that whatever caused this simply hasn’t been studied in the way that BRCA has.

I hope you can take some time to reset your fighting spirit, the longest night has passed now and perhaps we will feel the benefit of more light in the near future xx

pants22 profile image
pants22 in reply to Lyndy

Thankyou Lyndy... I know there are many people far far worse off than me. Life is life and its better we don't all know what's around the corner eh?I am positive just with an occasional meltdown... As a nurse for many years.. I saw on numerous occasions how life really does hang on by a thread... We can only enjoy it and try to make a difference somehow. Merry Xmas. Xxxx

delia2 profile image
delia2

Hi. That truly stinks having breast cancer on top of ovarian. You’d think the chemo would have stopped it. I have a PALB2 mutation which gives me a high chance of breast or pancreatic cancer but my oncologist seemed to think Olaparib would be protective against it. Try to enjoy the holidays and all the best with your breast surgery. Xx

pants22 profile image
pants22 in reply to delia2

Hi Delia thanks for that. Yes I think they should look a bit more closely at my genes etc...I was a picture of fitness my whole life and then BAM.....theres got to more than bad luck involved with this...xxx

Zssu profile image
Zssu in reply to pants22

Hi, I do empathise with you. When you think you are done, you have another mountain to climb. I found it best to focus on one step at a time. You sound as though you are keeping calm but do allow yourself a wobble, I have had many. We are here to help you back on your perch.

I have had 3 primaries (am Brca 1+) did the Bc before the OC. Had 3 years of chemo and surgeries. My choice was no reconstruction after mastectomy and have not regretted it at all. Couldn’t face another op. You may be offered a portocath. I still have mine, best thing.

I do hope your appointments go well and you get on with your team. Please let us know how you are doing. Zsu xx

pants22 profile image
pants22 in reply to Zssu

Hello Zsu. Thankyou.. Your words are very wise.. I've said no reconstruction already and I was due to get my portacath put in on 11th Jan but my breast surgeon has said I have to strictly isolate for 2 weeks so I shall try and get a new date for that. I had my picc line removed last week already. Surgery is on 19th. Can't come soon enough for me.. I'm so grateful I'm getting it done during covid. Have a lovely Xmas and thanks for your insights. Xxxxx Linda

Zssu profile image
Zssu in reply to pants22

Dear Linda, You too have a lovely Christmas.

Roll on the 19th. I think if you opt for no recon, the result can be much tidier. I have two curved scars under where they were and they are hardly noticeable now. There is a bonus: life without a bra is bliss! I live happily flat. I bought lots of silk shirts on ebay with pockets to start with, they made the transition easier.

I will be thinking of you and wishing you well every step.

Zsu xx

Iside profile image
Iside

Gosh soo much to contend with, my thoughts & positivity go out to you. However you are being treated with more to come & although everything may look bleak to you now, take it a stage at a time & it’s surprising how it all starts to slot into place. I haven’t had your experience but am on a different route with ups & downs, so just compartmentalise it & plod on, never looking forward or back & it’s amazng how you get through. Lots of positivity & big hugs, Iside X

pants22 profile image
pants22 in reply to Iside

Thankyou.. I appreciate your words of wisdom.. Having cancer makes a person stronger but humbler at the same time. What a peculiar situation. I certainly intend to plod on as able. Have a wonderful day tomorrow. Xxxx Linda

Hi, sorry to see that you have two cancers. I am BRCA negative with OC stage 4. It’s a rough journey, but hang in there. I feel your depression about your condition. Keep you in my thoughts and prayers that you will overcome this and stay strong. Hugs! Donna 🙏 ☺️

pants22 profile image
pants22 in reply to Pianoplayer731021

Thankyou so much. I can almost feel the warm support of my fellow warriors. It helps. Xxx Linda

Broader profile image
Broader

Absolutely feel your pain, we are left wondering what on earth did we do to deserve all this. Stay strong 💪

We are thinking of you.

Wishing you well

Christine x

pants22 profile image
pants22 in reply to Broader

Thankyou Christine.. I actually feel quite well despite my issues... But dread times ahead. Anyway.. Xmas round the corner... Tinsel up and carry on... Xxxxx Linda.. Merry Xmas.

What rotten luck, to say the least. I Hope after all you treatment things will get 100% better. Try to have a wonderful Christmas in spite of everything.

Love from Angela xx

Ruebacelle profile image
Ruebacelle

Well not what we want is it. But you are very strong and you have your big girl pants praying for you from france big hugs

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