No improvement some areas worse - SHARE Metastatic ...

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No improvement some areas worse

60 Replies

I am literally feeling sick to my stomach. I just spoke with my family doctor and my bone scan, the first since I started chemo, shows several areas that have grown (which I could feel the pain from) and the rest is the same as my last scan 6 months ago. She asked when I see my oncologist next, which is Tuesday. I’m bawling my eyes out and feeling at the end of my rope.

When I had a lot of Progression and had to start chemo it felt like a kick in the gut. I was told there are no other oral meds I can try and that it is chemo forever. I was started on Abraxane as it is his go to chemo drug. Now I have no idea what he will do. I hate chemo and how it makes me feel but placed all my hope in the fact it would finally do something and make some of those bone Mets clear up.

I’m also confused as my orthopaedic surgeon said my last scan showed some healing. I’m hoping beyond all hope that the bone scan is only showing where there is cancer and not telling me of some of it is healing. I was feeling so positive and to hear this today is the worse. Laying in bed crying and typing to you ladies as you are my quiet support team. I really needed to vent here before I explain what I was told to family. This is one reason I wish my oncologist would call with results and not make me wait for my appointment. I have my family docs read on the report but not his.

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60 Replies

Hi there

I'm sorry to hear of your results, it seems a few of us are having a rough time at the moment, I just keep saying 'give me a break!' . You vent all you like, lord knows we all need to at some point. It's difficult to rehash over it all to family especially when you don't really feel you have the full picture and can not answer any questions with certainty, frustrating!

Teddielottie profile image
Teddielottie

Sarah , I am sorry you are having to wait till Tuesday to get a proper explanation of your recent scan from your onc ., which I hope is much better than what you’re now thinking , and I just want to give you a hug and tell you to hang in there . Sending love x

in reply to Teddielottie

Thank you ❤️

Thank you so much Sandra. I like your explanation and it makes sense now that I have calmed down some. My ct scan from July showed some healing which my oncologist and orthopaedic surgeon both commented on.

I hope the increase is inflammation from healing or a fracture and not progression. I have put all my hope in this chemo. I’ve always had steady or some progression in my bones so was hoping this would be the first time I had some healing. My husband and best friend are both angry that she told me this info late on a Friday when I cannot ask my oncologist about it. My oncologist doesn’t like when she gives me results as he said she doesn’t know what she is reading. My friend and her partner are both livid and that just makes me love them more. They are ready to kick ass for me if needed lol.

It means so much for you to take time from your own issues to reach out to me. ❤️😘

mariootsi profile image
mariootsi

I agree with Sandra. Wait for your onc to get clarification.

Sarah what a sensitive situation you are in. It’s also difficult to tell family and maybe friends. As thoughtful and loving as they are nobody knows how you feel.

We all hope so much that your new treatment will be successful and help you immensely, especially with the pain control.

Cry as much as you like, it’s understandable and hard to control. It’s a feeling and you must go with it.

Thinking of you

Cheryl

in reply to

Thank you Cheryl

Thatflowerlady profile image
Thatflowerlady

I am so sorry you are going through this . I have also experienced the well intentions of my family doctor giving me test results on the phone . The first couple times I was really upset until I had my appointment with my oncologist. Each time my family doctor calls and there are any changes on the scans she has used the same sad tone of voice , offered assistance and expressed her sorrow . Usually once I go to my oncologist appointment the information has not been as grave as my doctor has relayed to me . This has happened at least 3xs since diagnosed.

I am hoping this will be the case for You also.

I also have an oncologist appointment about scan results this Wednesday after my most resent call from my family doctor.

I have wondered about asking her not to call but the waiting for scan results drives me crazy.

Just wanted to let you know you are not alone in this experience. Hang in there .

Luann

in reply to Thatflowerlady

Thank you Luann. I’m like you as I hate waiting and my oncologist doesn’t call me anymore like he used to. I will be thinking of you Wednesday and hoping your news is good.

I will post on Tuesday when I talk to him.

BluHydrangea profile image
BluHydrangea

So glad Sandra has mentioned the difficulty interpreting the healing on scans. We are with you— please let us know the results after your appointment with Onc next week. (((Hug))). You are in my thoughts!

in reply to BluHydrangea

Thank you.

Timtam56 profile image
Timtam56

Sarah.

OMG. This must just feel so terrible.

What can any of us say to you here, to make it any better? Nothing. Is my thought. Just know that I am thinking of you.

As we all will be, helplessly, in the knowing, that our friend is not doing so well.

Sarah. I hope you have people arou d you who kniw you and love you. And that you love back.

Really. It's all anyone ever has in the long run.

And my how it's that you are able to tell them how you feel and that they can hear you.

🌻🌼🌸🌻🌼🌸

Chris from Oz

in reply to Timtam56

Thank you Chris. I have the most amazing husband and an adult son and daughter. My Mum is elderly but a great cheerleader and my best friend and her partner and the best. My husband came home from bed and crawled up beside me on the bed and we snuggled while I had a good cry and he calmed me. ❤️

Arisgram profile image
Arisgram

Oh Sarah! I really like Sandra's explanation better than your family doctor's. I can't add much, but maybe this will help a little. My guy is a triple board certified doc and so smart he's downright weird! Every single time he's looked at one of my reports or ventured a diagnosis....he's been wrong! I don't rub it in, but it has gotten kind of funny. I truly believe only our oncologists can speak with any real authority.

I hope your GP is just "talking out his backside" as we say here in the south. Know we are here for you, and you can vent all you need to! Andi

in reply to Arisgram

❤️Andi

Sunnydrinking profile image
Sunnydrinking

Thinking of you & fully understand your upset. I hope you get a more positive & clearer outcome when you see your Oncologist.

In the meantime take care & try not to worry.

Sending you a hug.

Jo xx

in reply to Sunnydrinking

Thank you Jo

Mary115 profile image
Mary115

Grateful that you have some good ass kickers in your corner while being sad for you that your GP was so dense on giving you the results on a Friday afternoon..

in reply to Mary115

Thanks.

AvidBooklover profile image
AvidBooklover

Distract yourself until you hear from the oncologist! It is so annoying when we think experts are weighing it, but they are instead muddling things. Makes me crazy!

in reply to AvidBooklover

Love your name. I’m a big reader.

AvidBooklover profile image
AvidBooklover in reply to

Sitting in bed reading the new Lisa Jewell book right now; planning to interview her! What are you reading?

in reply to AvidBooklover

I’m reading The Spoon Stealer. An ARC I received through NetGalley. A great place to read books before the are released (asked to give an honest review).

AvidBooklover profile image
AvidBooklover in reply to

I confess that I do not love reading eBooks. For interviews, I fold down pages. So I kick and scream for print galleys, even if PDFs. Look there for The Four Winds by Kristin Hannah coming in Feb...and Eternal by Lisa Scottoline, a departure for her with a historical, coming in April.

in reply to AvidBooklover

I will make note. I never read ebooks till I found NetGalley. They were a life saver during Covid.

AvidBooklover profile image
AvidBooklover in reply to

If you share titles of books you have enjoyed, I can make more suggestions. Remind me what country you live in...I am US.

in reply to AvidBooklover

I’m in Canada and i read everything. I like mystery/suspense, thrillers that aren’t too graphic, general fiction and for the light moments some rom/coms that are more comedy. Basically anything but sci/fi, horror or westerns.

AvidBooklover profile image
AvidBooklover in reply to

For mystery/thrillers...if you have not read Shari Lapena, give her a whirl. QUICK reads....totally suspenseful! Another thriller coming in two weeks...The Girl in the Mirror by Rose Carlyle is terrific too. For more serious, The Vanishing Half by Brit Bennett.

in reply to AvidBooklover

I will check these out. You mentioned Interviewing authors, do you work in the book industry? I also just won a print ARC of Jennifer Robson’s new book Our Darkest Night. I enter every contest I see on social media. Lol

USIrishcolleen profile image
USIrishcolleen in reply to AvidBooklover

Thanks for the leads on good books. I have been doing a LOT of reading and a LOT of knitting during this quarentine.

AvidBooklover profile image
AvidBooklover in reply to USIrishcolleen

Happy to recommend! His & Hers by Alice Feeney was a good quick thriller though I joked with her that I would have ended it differently. Also Monogamy by Sue Miller is well done.

Rhwright12 profile image
Rhwright12

Sending prayers it’s just tumor flare from the new meds! 🙏🏻💕🙏🏻

in reply to Rhwright12

I’ve never heard of tumor flare but maybe it’s that.

Rhwright12 profile image
Rhwright12 in reply to

Not too sure of the science behind it...But sometimes they say when u start a new med it gets slightly worse before getting better...Like your numbers can go up slightly before going down...

in reply to Rhwright12

That makes sense.

Totheriver profile image
Totheriver

Sorry to hear this but hopefully the oncologist will have better news💕

in reply to Totheriver

Thank you.

diamags profile image
diamags

My husband is a retired surgeon and when we found out I was MBC, we both decided at that point, from then on, we'd wait for any results to come from my Onc. As Sandra pointed out as with your GP, other specialties don't necessarily know how to interpret results. Not only that, but if it's bad news, the Onc knows the next steps. Your GP thinks she's looking out for you, but may be causing unnecessary stress.

in reply to diamags

She definitely caused a lot of stress and after giving me the results says you will have to see what your oncologist wants to do.

Hi Sarah,

I'm so sorry to hear your news. I agree with Sandra. I think it's best to receive results from your oncologist rather than your GP. My GP doesn't even attempt to tell me what my radiology reports say, which I think is wise. They always defer to my oncologist. GPs are not qualified to read the reports and see exactly what is going on. What if your GP has got it wrong and has worried you needlessly? Now you are going to be worrying over the weekend. Please let us know what your oncologist has to say.

Take care,

Sophie

in reply to

Thanks Sophie. I owe you an email but have been stuck in my own head this past month.

in reply to

Don't worry, Sarah. Email me when you feel up to it. No pressure at all my dear friend.

Sophie

in reply to

Some days I have to force myself to do anything. I just need to make the effort more. I promise I will write this week. You will be my goal ❤️

in reply to

I know it isn’t easy. I was struggling emotionally today. I was reading through some old magasines about a British celebrity who died of cervical cancer some years ago and it really got me down. In the end I had to stop reading and throw the magasines out, as it was too much to be reminded of some of the realities of cancer. Don’t tell my husband, but I should have listened to him and not read the magasines. Rather than saying he was right he was “other than wrong!” 😂😂😂

in reply to

Lol. We won’t let him know he was right 😉. It’s hard reading articles about others that have had cancer. I recently read a book that did not mention the woman had breast cancer. I almost threw it out but I read it and then felt awful after it. I hope you feel better now ❤️

in reply to

Thanks, Sarah! Yes, it is hard reading about others who have had cancer. I also find it hard when people tell me about their friends and family who have had cancer and died from it. It gets me down because I put myself in their position and imagine myself dying too. So I know what you mean about the book you read. That's how I felt too, just awful. But I am feeling a lot better now, and hope you are too.

Sophie

SeattleMom profile image
SeattleMom

So very sad and sorry to read your post, Sarah.

When is your appointment with your oncologist? Maybe he/she can shed more detailed light on the scan and hopefully the possibility of a chemo treatment that is a better fit. I keep reading that this disease can be so unique to each patient and the treatments are becoming so much more individualized.

Needless to say, you are in my heart and prayers, Sarah, and I hope that the oncologist will decide that abraxane might not necessarily be the "go to chemo" for you.

Love and prayers, Linda XXOO

in reply to SeattleMom

My appointment is Tuesday which is a good thing so my wait isn’t too long. Maybe a different chemo drug may be needed but each time a treatment is used it’s one less for the future. 😞. Thank you for the love and support.

MyMiracle13 profile image
MyMiracle13

Just want to say that I wish you better results when you meet with your oncologist. As everyone else has said, the best person to interpret the results is the oncologist. I’m pretty sure your chemo is working and that all will be okay❤️🙏

in reply to MyMiracle13

Thank you

rubyc1234 profile image
rubyc1234

I agree with the above. My GP admits that he has not got the knowledge my oncologist does and he is reluctant to give me results. Last time I asked for them he said he could not find them and I am pretty sure they were there, but he wanted the oncologist to deliver the news.

mudakurag profile image
mudakurag

Keep hopeful.Sending positive thoughts and prayers.

in reply to mudakurag

Thank you.

Tam-56 profile image
Tam-56

Sarah,

I like Sandra’s response! Your Onc is the best person to interpret your scans.

I will be thinking of you Tuesday. Good luck

Sending you a virtual hug.

Maura❤️

in reply to Tam-56

Thank you Maura.

Arisgram profile image
Arisgram

I'll be thinking of you today, Sarah. 💕

in reply to Arisgram

Thank you so very much for thinking of me. I will let you know what I find out today. ❤️

lynnhbtb profile image
lynnhbtb

You're so not alone. I'm on "chemo forever" and have managed to take "holidays" along the way and have good response. I have also been crying in the bed, although I usually cry in the shower. ?? Please keep us posted on your situation. Sending hugs your way.

in reply to lynnhbtb

I’m sorry you are the same as me but it is nice not to be alone.

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