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To Hellie C

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hellie:

I love your new photo! It looks like you had a fantastic holiday!

My best to you.

Kathy

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

shows you looking so relaxed, healthy, and happy. That makes ME happy! I hope you are feeling as well as you look.

Best,

Jill

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Yes - it was a lovely holiday - thank you. I thought it was time to post a new picture with my latest hair growth, which is now 8 months post chemo. I am SO lucky that it is growing back healthy and even. The chemo curls are nearly gone now.
But it's back to earth with a bump, as I came home to a letter with the date for my MRI scan to check out my "roving pelvic pains". I am having the scan this afternoon and have an appt with my onco. on 19th Oct. for the results. I am hoping and praying that it shows nothing more than adhesions/fibrosis/scar tissue, but as I was told that the chance of a further recurrence was "moderately high" I have to be prepared to hear the news we never want to hear!
In the meantime, I am taking Linda's advice and I refuse to be "cancer girl". The weather here in the UK has been fantastic for the last week and I am taking full advantage of it as it is scheduled to break tomorrow and then we will be into damp, dark English autumn!
Thank you, ladies, for your continuing care and concern - I am so lucky to have found you and this forum - you make this journey bearable.
Kindest wishes
Helen

Susanna23
Posts: 66
Joined: Dec 2010

Hi Helen
I just want to wish you all the best for tomorrow when you get your MRI results. It's been at the back of my mind for a few days to get in touch having seen this post...This is the third picture we've had of you and your new hair isn't it? I find it very encouraging! You look great! I can just about bear to look at mine now - it's coming along but not yet fit for purpose.....
I had a checkup myself today - second one post chemo and clear CT in April. Just a physical exam, with my surgeon this time. All well, apparently, so I am very relieved. Had a chat with him about scans and he is not keen to do them on a regular basis.
Are you still doing your apricot kernels etc? I am still following my turmeric, vitamin D etc regime and have an appointment at the London Hospital for Integrated Medicine next month for an assessment for complementary therapies. All this UK sun has to be good for our vitamin D levels, hasn't it, so let's make the most of it.
I have my fingers crossed and will be thinking of you tomorrow.
Kind regards
Susan

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

or - it may actually be tomorrow for you - I'm on the west coast of California, so I think it is tomorrow in the UK.

All have all my fingers and toes crossed for you, Hellie. Hope you get clear results.

Suzanne

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hi Hellie:

I hope your appointment today went well and your MRI shows good results. My thoughts and wishes are with you this morning!

((((hugs))))

Kathy

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Just back from my appointment to discuss the MRI results with my oncologist. Feeling a bit wobbly as there wasn't the "black and white" answer that I was hoping for.
They have reviewed the scans and think that there is fibrosis present which may be causing the roving pelvic pains but they are not absolutely sure that this is what it is. The proposal is to re-scan in 3 months to see if it has changed. At this stage, whilst they think that it is probably fibrosis caused by all the surgeries and radiotherapy they can't be completely sure. Apparently there was a lot of "umming and arhing" at the multidisciplinary team where it was reviewed but, at the end of the day, they just can't tell for sure. However, the oncologist says that whatever it is, it is on the left hand side and when I asked if it turned out to be tumour, was it operable, the response was probably not as it is too near the side and blood vessels, so either more chemo or hormone therapy would probably be the way forward. But she did also say that if it turns out to be a recurrence, then we might seek a second opinion at the Royal Marsden hospital in London, which is a world-renowned cancer centre
So the outcome is that I have to wait for 3 months before they take another look. I really am not good with this sort of uncertainty - hence the wobbly feeling I now have. I keep telling myself that it will be OK and that it will be fibrosis - but that old nagging doubt about recurrence is hanging on in there.......oh how I hate this darned cancer journey.......

There is some

- it could be a tumour recurrence.
The suggestion is to re-scan in three months, looking for.
Apparently, they think the scans may be showing significant fibrosis, but they are not completely sure whether it is this or a tumour recurrence.

to get the MRI results. Still feeling a bit wobbly

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

sorry - ignore the last part of my post - it's just cancer head failing to delete initial thoughts.................

JoAnnDK
Posts: 275
Joined: Jun 2011

....are the worst. Is there another kind of scan that would be more definitive?

JoAnn

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hellie:

I seem to get scarring, etc. on my left side. In July of 2009, the small mass that was there from my initial surgery in 2005 showed up again on a scan. The scan done indicated that it actually shrunk. The doctors, however, that were treating me at the time said that it could not be removed, no clear margins, I would immediately begin chemo, have some surgery if the thing shrunk, and then more chemo and would have a permanent colonoscopy. Being that the mass was there and my radiation oncologist was watching it for years without change, I decided to get a second opinion. I got a second opinion and that doctor did a biopsy which came back positive. Their treatment was radiation with chemo. Before I even spoke with the doctor about this, the nurse was scheduling me for the radiation. I said no I wanted to have a conference with the doctor. I did and then he sent me back to my old doctor with his partner to discuss my treatment with the radiation/onc. My radiatino onc said once I have that radiated, I couldn't have radiation again and if it came back there again it could eventually lead to my demise. Ha.

So I went far far away from there before I decided on any type of treatment. Met a wonderful doctor who viewed all of my slides, scans, etc. (the other doctors didn't even look at my notes before meeting with me); He met with a team of doctors who decided that my best option was surgery and they thought they would be able to get it all (clear margins).

In February of 2010, I had surgery and all results were negative except for one removal of a lymph node which came back with microscopic cells. I had no treatment, just a watch and see approach with scans. I have had two PET Scans and recently a CT scan which all came back negative. I also do not have a colostomy.

When my very first doctor retired, I never felt comfortable with the doctor that I was given to. He didn't seem to care. I had that feeling from day one. So I kept searching until I found a great doctor. As I told this doctor, there may come a time it may not be good news, but his compassion means everything to me.

Also, on a side note, none of my scans ever showed anything. And the spot that was on the scan they kept saying was scar tissue. Within a month I had a CT Scan, PET Scan and an MRI all showing the same thing. The only problem I was having was a "pain in the butt" feeling on my left cheek which eventually became more and more prominent.

What a roller coaster that was!

I guess what I am saying Hellie is if the treatment you are going to get doesn't seem right to you, by all means seek a second opinion.

My best to you ((((Hellie)))

Kathy

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thanks to you both for your comments and support. I don't think another kind of scan is likely to give us much more information at this stage - my oncologist discussed it with the radiologists before the MRI and everyone agreed that an MRI would give the best detailing, so that's what we went with.
I'm not unhappy with my medical team - my surgeon was great and my oncologist, although a little "dry" in her approach is pretty good too. I have had no complaints about my treatment to date.
I have had quite big surgeries and radiotherapy - hysterectomy in 2001, radiotherapy for recurrence in 2008, then the debulking and colostomy last year, so scar tissue would not be unusual. I guess it's just the "watchful waiting" which is so difficult for me, as I am someone who doesn't deal well with uncertainty.
But this is where we're at and I have to come through it the best I can. I don't think that I am going to seek a second opinion at this stage, as I don't think anyone could tell me more. But I think I will keep that up my sleeve for after the next scan, if anything more is showing.
Thanks, ladies for your support. It's good to be able to come here and talk about it and to exchange ideas.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Had a thought late last night that if a CT/PET scan would "light up" a tumour, then why could't we do one now to try to identify if my problem is scar tissue or tumour recurrence. Did a bit of research and found comments on various imaging sites which confirmed that a PET can be exxtremly valuable in distinguishing the difference between scar tissue and tumour!
So I spoke to my oncologist this morning, who confirmed that it would be more likely to give us an answer than the MRI scan and would mean that I didn't have to wait another 3 months. Bingo! She will run it past the multidisplinary team (who she thinks will OK it) and then book a CT/PET scan for me.
It just shows that wherever we are in the journey, we have to be our own advocates, do our own research, ask questions and push for what we think we might need! A PET is more expensive and there are far fewer machines in the UK (the nearest one to me is 50 miles away), so it is understandable that our national health service opt for cheaper easier options, but in this case my persistence seems to have paid off - will keep you all posted!

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hellie:

You are absolutely right. I am supposed to get PET scans, but my new insurance company won't approve it. They say it isn't "medically necessary". That was my point when I was fighting my new insurance company. I have sooo much scar tissue that the CT scan would only show that but the active cancer cells could be hidden. This is where a PET scan would be most beneficial because it would "light up" any active cancer.

It is a real easy test. Also, the radiation exposure from a PET scan is so much less than a CT scan. Of course at CT/PET scan is a good choice because they overlay the two tests and can actually see exactly what is going on.

I am glad your persistence paid off. Please keep us posted!

Kathy

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