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Recurrance symptoms??

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hi Ladies..

This may seem a lame question but would the recurrance symptoms for PPC be the same as for original diagnosis? I had few and minor symptoms really through all of 2010 and was diagnosed this time last year (virtually to the day!). I am just so tired at the moment, I have no energy and I feel a bit "sad"...which is unlike me. My appetite had been off but I have no bloating. I am being a little over sensitive? And if I wanted to check these "new" symptoms should I contact my oncologist or just go to my GP?

Any advice would be much appreciated.

I am off to the Biggest Coffee Morning in the world! There's a charity here in the UK called Macmillan; not sure if it's worldwide. Anyhow, I am going to try to support them this morning by taking part but I shall be drinking lots of coffee to stay awake!

Enjoy your day,
Marisa in London

Carolyn68
Posts: 39
Joined: Aug 2011

HI. I am still in chemo, doing chemo maintenance....started chemo June 2010. Before that my symptoms were only feeling like I had bladder infection, tired. But, nothing else.
I have complained to my doctor NOW about no energy, sad, and being sensitive....and she tells me it is normal for a cancer patient to feel this way. However, I am ready to take some anxiety meds to help....I am usually an "up" person and I hate feeling sad. Just call your onc office and desciribe to them your symptoms....they may have a suggestion for you. If not, see your primary. If there is concern, they will refer you back to onc. That is what I would do....and I hope the coffee you are drinking is decaf. Have a good day! :)

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hi Carolyn,

Thank you for your comments and advice. I never know whether to "make a fuss" or just plod on! Think I'll call my key worker nurse up at oncology come Monday.

Thank you again, so nice to have people that understand.

All the best,
Marisa

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Marisa,

hope that you are managing to get some pleasure from your stay in London. A very long way from where I am in Australia.

I put down my few occasions of depression to the chemo. It was not like me and came and went in a way that was somehow distinct. Not feeling it now. Like you, I was diagnosed last September. Am currently still on break from chemo but CA125 slowling going up so don't know how long I'll last without resuming some kind of chemo (I presume). If I do get symptoms, hope that they do another scan to show up something.

Forget if you have said what chemo or other treatments you have had so far to have had few side effects. I've had very few side effects too. Only Carbo/Taxol so far. Although I had the periods of depression, I never did lose my appetite. (Wish I had - hav binged my way up 40kg. Typical for me.)

I brought the symptoms up to my oncologist. He said that the chemo *may* have caused the depression. Certainly, it can cause tiredness. Did that for me too. I'd bring everything up with the oncologist so that he/she has a good idea of the effect of the treatments on you - the emotional as well as the physical ones. That gives the oncologist a better idea of how you are faring with the treatment.

Take very good care,

AussieMaddie

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hi Maddie

Thank you for your comments and advice.

I actually live in London, born and bred here and funnily enough was born a stones throw from where I had my surgery in February at St Thomas', Westminster.
I had Carbo/Taxol and finished my treatment in April but just feel sooooo tired right now. I went back to work in May and am an Audiologist working with babies so I am on my feet all day but this tiredness is rediculous. I didn't think the chemo would still have that effect on me but then maybe that was a little naive. I am due my next Oncology appointment in November but will call my key worker nurse on Monday I think; they may suggest I go see them sooner.

Thank you again...weird, you being diagnosed last September all those miles away...it's a funny old life, eh?

All the best to you,
Marisa

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

"weird, you being diagnosed last September all those miles away...it's a funny old life, eh?"

Yes, more's the pity

AussieMaddie

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Sorry Maddie...I feel I may have offended you. If so, I do apologise. I wasn't being flippant, I just felt it strange you and I both suffering from the same condition at the same time all those miles apart and yet it has brought us here to this discussion.

With very best wishes
Marisa

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Oh dear! Not at all flippant, but totally ok. Perhaps my response seemed to put a spoiler on your irony. I'm sorry for that. I think it's such a good idea to see the lighter side of things occasionally. I really do. I love to read your replies, so don't vet them now! Ok?

Take very good care,

AussieMaddie

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Thank you for that Maddie, glad I didn't upset you.

Hope you're keeping well.
Marisa

stella65
Posts: 150
Joined: Feb 2011

Hi Marisa, Mum has PPC, she didn't have any symptoms but has been told recurrance symptoms would be Loss of appetite, bloating and pain are the main things to look out for, mum seems to be doing pretty well after the chemo, she does have days when she feels tired but as she rightly said " Don't we all" It is certainly not uncommon for the chemo to make you tired and tearful, I think mum had the advantage of being physically fit for her age at the time of diagnosis and she has continued to carry on with exercise as much as poss, I don't mean she goes to the gym but she walks her dog everyday in the forest and is generally busy with horses etc, this also helps take her mind off things!

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hi Stella

Thank you for your reply. Your mum seems to have the same positive attitude as I have yet I guess reoccurance will always loiter in the back of our minds.
Like your mum I was a very healthly lady until diagnosis this time last year and I really feel that helps with the general recovery from PPC and it's nasties. I am feeling a little better these past weeks so not quite so fretful.

I don't get many responses as I think my attitude toward this whole thing may not be in keeping with the norm! I cannot NOT be positive, it isn't in my nature to be a victim however unpleasant things get. I am lucky to be blessed by good family and friends; all of that goes a long long way.

Funnily enough, my lovely daughter is called Stella too! She is nearly 30 and has been a tower of strength as I am sure you have been to your mum; well done you.

Thank you again for your thoughtful and useful reply.
With very best wishes to yourself and your mum,
Marisa

stella65
Posts: 150
Joined: Feb 2011

Hi Marisa, I am not actually a stella!! I often use it as a forum name, on a lot of forums no one uses their real name but it seems some do on here so I may have caused confusion! I am ashamed to admit I use the name as I like the Lager!!!!! Hope thats not why you named your daughter Stella ( he he )

Lots of love SUE X

Best Friend
Posts: 222
Joined: May 2011

I think the most important thing for my mom when she first found out about the cancer was to get her fit mentally. She was on prozac but she never really knew if it worked. So, when she came home with the new findings and worried about death, the doc knew he had to help her to get through the mental before even trying to start chemo. Especially with this cancer that just LOVES to stick around. She got switched to celexa from prozac and on days(fewer and far between now) that she feels bad for herself she will take an attivan. This helps her and she rests a little and then when she gets up, she feels hopeful again. i know there still will be depression but medicine can't take it all away. Maybe you need more of an outlet to discuss things. Coming on here is wonderful, but i see a therapist and i am not even the one who has the cancer. It's good to get stuff out. Walking helps too. When i am really bad i get a book and get in a hot bath. Sounds dumb, but something about the hot water settles me a bit.
Maybe i know nothing at all. I just hate hearing people are feeling depressed. It runs in my family and i try to keep on top of it so i do not end up like my grandmom who spent alot of her life ina mental hospital. My sis was in there a couple times also. It is just soooo misunderstood. Please tell ur doc that u would like to try an antidepressant. I really think that you have enough to go through.

diagnosed2009pg
Posts: 8
Joined: Mar 2011

I was diagnosed in November 2009. I was a breast cancer survivor of four and a half years when I was diagnosed with PPC Pathology/Stage 3/primary. Originally I had abdominal debulking surgery, followed by chemo RX, IV and IP. I have had one recurrence since original diagosis (after 8 months in remission) which was treated with Carboplatin and Taxol weekly February - July. I had a good response and CA125 dropped to within normal range (0-35) for 3 months. Within the past several weeks I was retested (3 month follow up) and the CA125 jumped to 500. My oncologists does not make a determination just based on the CA125 ( he said it can sometimes be false postive) and I was not having any "symptoms" until the last week or so. I have been experiencing a depression in appetite, nausea after eating, a feeling of fullness, indigestion and some abdominal pain. Although my oncologist suggested that we wait and retest blood work in one month, my body is telling me differently. If you have a concern about recurrence, it would be totally appropriate to call your oncologists office, if for no other reason than to give you peace of mind. Do they run CA125 in England? I am not an advocate of living in fear of recurrence, but I think we do know our own bodies and have a "sense" when something may be of concern. I have called my oncologists office and asked to move forward with a CT Scan to confirm whether I am still in remission or need to resume chemo. I too have experienced episodes of "sadness" from out of nowhere! Fortunately it passes and I am back to my usual "perky" spirit. Keep the faith and fight the fight! P

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am from the UK. I too have PPC stage 4. Your post rang a bell for me. I had a reccurance this year in September. I knew it before I had my ca125 test. I had similar symptoms as you - bloating, feeling of fullness, indigestion and some pain. I tried to push the nagging thoughts to the back of my head but in my heart I just knew.

This was my 3rd reccurance so I was remembering the pattern. I was treated successfully twice with Carbo/taxol and my numbers always came down from 1,200ish to double figures.

Anyway, my CT scan showed a thickening of my peritoneum and my CA125 was 1700. So I was right - it was back. I was upset - mainly because I couldn't face losing my hair again. But my oncologist wanted me to try a different chemo - Topotecan.

Then good news now is - after 2 treatments my CA125 is down to 991 and I can feel all of the bloating etc has almost gone and my tummy is so much better. I am having another CT scan this week and new bloods too.

What I am trying to say - Yes it is scary if/when it comes back. Unfortunately we on here with PPC already know and expect it will come back. Mine has come back twice in 2 years. But I am looking at it this way. This is now part of my life. When it comes back they will put me back on treatment. Another chemo may be much better and give a longer remission.

But it is something we can't get away from - I know mine will always come back and I have to be prepared for some more chemo.

Try not to get too scared - chemo is amazing stuff as it can zap the little b***** and give us some quality cancer free times.

Tina xxxxx

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hello

Thanks for the reply. I have been out to see my sister in the USA (are you from there?) and that has boosted me manyfold.

My CA125 is creeping up but very very slowly so I think all is well. I feel better than I had been feeling so perhaps my symptoms were unrelated, thats the thing, any bout of indigestion brings alarm; could have been the curry!
I saw my oncologist yesterday and she is calling me with the latest results next week so we shall see. But I'm happy and have such lovely family and friends that I know I shall cope again should I need to.

Wishing you well,
Marisa

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