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Not a good news day today!

HellieC
Posts: 439
Joined: Nov 2010

Today was not a good news day! My oncologist rang to say that my latest MRI scan shows a new nodule in the pelvis. This will be my third recurrence and the options in the armoury are getting less and less. So, here we go on the merry-go-round of PET scans, biopsies and possibly more major surgery (if it is an isolated nodule) or other treatment if it is more widespread. I think the reality of it all has yet to hit me, yet in my heart I know that curative options are becoming less likely now.
Hopefully I will get my head around this in the coming days/weeks and will soldier on, but for now, it's a difficult pill to swallow.
Helen

Kaleena's picture
Kaleena
Posts: 1122
Joined: Nov 2009

(((Hellie)))

Darn it! Darn it! Darn it! Hang in there!
Sending you hugs.

Kathy

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daisy366
Posts: 1493
Joined: Mar 2009

I'm so sorry about this shocking news.

Once the news settles a bit remember that more treatments are being developed, too. I also have positive nodes in my pelvic and paraortic area (second recurrence) which is being treated with hormone therapy. I don't know if it's working yet till I see doc in 2 weeks. This is all pretty unnerving.

Will they do a biopsy? You probably don't even know that yet. Anyway, lots of prayers and hugs being sent to you, Hellie.

Mary Ann

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

So sorry to hear. But the warriorette credo and cheer is: It's Not Over Till The Fat Doctor Sings!
Here's praying for you!

Sara

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jazzy1
Posts: 1387
Joined: Mar 2010

Darn that cancer!!! I just hate to read this as know you're a positive, go-getter. Try to let some of the dust settle and pick up the pieces and regroup.

Life throws us punches and onto many unplanned paths, but all we can do is try to stay on steady ground. You'll get there and realize this was just another detour.

Cancer is not a sentence, it's a word~
Jan

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txtrisha55
Posts: 424
Joined: Apr 2011

I pray that a new & different treatment is found that will help stop the progression of the disease. I will continue to pray for you and the drs treating you to find a way to make things easier for you. trish

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Hellie, i am so sorry to read this news :( Yes, that is one persistent bugger you have there. I'm sure right now you are in shock, it just seems so unexpected, but soon there will plans to get to the bottom of this. You are one strong fighter and will get your armour back on, ready to do battle again.
My thoughts and prayers are going your way.
Big cyber hugs,
Annie

Susanna23
Posts: 66
Joined: Dec 2010

I think I know, from previous posts, that you have confidence in your doctor and they know you well. And I am not a medical expert but repeated recurrence from an adenocarcinoma (which is what you had?) sounds very unusual/unlucky. I have/had carcinosarcoma and was told a recurrence was more likely than if the more common adenocarcinoma. S
Also, would you consider a referral to my complementary doctor (Dr Sosie Kassab) at the Royal London Hospital for Integrative Medicine? She sure has lots of tools at her disposal though not the usual ones and maybe - though I don't know - you could get on the fast track, given your situation.
Helen, I am really dismayed by this news - I knew you were up for a scan but wasn't expecting this.It makes me think we are all living on borrowed time (and must make the most of it)
If there's anything I can do, please get in touch
Susan xx

Ro10's picture
Ro10
Posts: 1420
Joined: Jan 2009

Sorry you have to gt back on the merry go round. You need to take a few days to let it sink in. I know you will be able to soldier on when the time comes and when you have a plan. It is okay to be sad after the news you got. You remain in my thoughts and prayers. Sending you a huge yber hug. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2295
Joined: Jun 2010

My heart dropped when I saw your subject line. I'm sending hug and prayers as you find your way through this -- again! I'm so sorry you have to deal with this -- again. I know you will find the strength to take on whatever course of action is decided. Right now, I imagine it must be a lot to digest and mull over. Take good care of yourself.

Suzanne

HellieC
Posts: 439
Joined: Nov 2010

Thank you for your supportive words and comments - you were all there just when I needed you. Last night I had a very good, long sleep - I think my body just needed to shut down and process yesterday's information.

Today I feel more positive and ready to take whatever they are going to throw at me. My gut feeling (although completely without evidence at this stage!) is that the PET scan will show that this is an isolated pelvic nodule and possibly operable. I have been fighting this persistent beast since my hysterectomy in 2001 and to date it has not spread outside the pelvis or to lymph nodes. Each time the treatment has been undertaken with curative intent and each time the persistent little beggar has returned with the odds on his side! I cannot find anyone or any research where a low grade adenocarcinoma has recurred so many times locally, despite conventional surgery, radiotherapy, more surgery and chemo! Does that make me unique? I would rather not be unique in this particular way! :-)

Susan - many thanks for your suggestion about the integrative doctor - it something that I have been considering and I may follow up once we know what path I am treading next. At this stage, I think I just need to get the conventional medical path in place and then I can add to it if it looks like it might help. But I have made a note of the doctor's name for future reference and thank you for the suggestion.

Thank you, ladies, you were there when I needed you most.
Helen xx

HellieC
Posts: 439
Joined: Nov 2010

Well, the latest news is that the PET scan did show increased uptake - but not where they thought it would! The suspicious nodule on the right hand side didn't light up but the mass on the left hand side, by the sidewall, was bright. So very unexpected and not good news. My team didn't think surgery was an option, due to the sidewall involvement and have started me on hormones (Femara - Letrozole)l
I asked for a second opinion from The Royal Marsden in London, which is an emminent cancer hospital. They have come back and said that surgery is "potentially feasible" but will depend on whether the tumour is stable, so I have to have another MRI scan and possible an exploratory laparoscopy before they can decide. They would not undertake such radical surgery unless they believed that they could get clear margins, as it would be futile. So, although I thought the "curative" door had been slammed closed, this latest opinion is, in effect, a very small chink of light shining through. A long way to go until we know whether they will operate, but at least I know that they are taking this all the way to the end of the line.
Helen xx

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Wow - another unexpected curve in this winding road. I'm glad they are looking at everything to give you the best outcome.

Hang in there. Hugs, Mary Ann

marieinlv
Posts: 40
Joined: Aug 2011

Helen, so sorry you have to endure the agony of waiting for tests, treatment and more days waiting... I will keep you in my prayers. I can't believe what we've been able to do already, with the help of our Loved Ones. God says not to worry, were in his hands, sometimes were able to do what he says and that is always awesome. Hang in there, Marie

HellieC
Posts: 439
Joined: Nov 2010

Thought I'd update you all with my latest news. In the last three months I have had two MRI scans and a PET/CT scan to investigate my latest recurrence (the third). My clinical team said that they couldn't operate, so I asked for a second opinion from an emminent cancer hospital in London. They concur with the local team - the tumour is entwined with structures e.g. nerve roots, so they can't get it out with clear margins. So surgery is a no-no. But the good news is that it appears to be contained in the pelvis, with no organ involvement.
So the plan is to continue with hormone therapy (Femara - an aromatase inhibitor) and scan again in 3 months to see if it is having any effect. So far I've been on it 5 weeks with no noticeable side effects apart from mildly itching skin sometimes. Fingers crossed that starving the little devil of oestrogen will shrink it down and keep it stable. If it does, then I will stay on Femara for as long as it works. If it doesn't work, then there are other hormone options or chemo in the wings.
My husband likens this whole cancer journey to a giant game of snakes and ladders (do you have that game in the USA?). Somehow, I seem to have hit a patch of snakes, but I'm hoping that some ladders are not too far away!
Kindest wishes, everyone
Helen

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norma2
Posts: 486
Joined: Aug 2009

I hope you hit a patch of ladders soon too, Helen. Thanks for the update. You are a fighter and an inspiration. Will be praying for you. Norma

nempark
Posts: 592
Joined: Apr 2010

Hellie Through your burdens upon God and he will sustain you. You are strong and you know what you are dealing with. Yes you will soon hit a bunch of ladders. Be strong and continue to feel well on the hormones. love and prayers J.

Kaleena's picture
Kaleena
Posts: 1122
Joined: Nov 2009

It is good that it seems to be contained. I am glad you are not having any noticeable side effects and I pray that all those pesky cells shrink back down!

In the USA, our game is called Chutes and Ladders. Same idea..ladders to go up, slides set you back. Heres to many many ladders for you!

(((Hugs)))

Kathy

Double Whammy's picture
Double Whammy
Posts: 2295
Joined: Jun 2010

Thanks for the update. Doesn't it seem strange NOT to have the side effects of chemo and expect that whatever you're doing is working? You know I take Arimidex for breast cancer and have no side effects. I often wonder how it can be doing anything if I'm not having a reaction of some sort. Afterall, we tolerate chemo because we believe it's running around killing cancer cells, and we put up with radation because we believe it's cooking any cancer cells, but this hormone therapy thing? How can it possibly be doing anything if we're not suffering?

BUT - here's hoping the Femara is starving that nodule and any other ER+ cells of the fuel they need to divide and grow and create havoc and that they will eventually just give up and die!

Hugs,
Suzanne

HellieC
Posts: 439
Joined: Nov 2010

Thanks for your positive and supportive comments, ladies.
Suzanne - you are so right - it feels very strange to have no side effects after all we have been through. It does make it feel as if it can't possibly be working. But it is comforting to know that you have had no effects from Arimidex, which is also an AI drug.
However, I am pleased to report that my pelvic pains are reducing considerably to the point where I am only taking half a dose of painkillers in the morning and half a dose at night. (I was on the full dose three times a day before). I have been taking the Femara for 6 weeks now - dare I hope that this is a sign of it helping to shrink the tumours?
Love to you all
Helen

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