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Not again...
I don’t know
what to say – or what to think. Kind of
what I felt like a little more than 2 years ago. But a lot worse. I didn’t know the diseases then, but I do
now. Diseases, because there were 2 of
them. Some of you may know, I was diagnosed
with 2 primary cancers in Jan 2020. IDC
Breast cancer (Stage 1, Grade 3) and Clear Cell Ovarian cancer, (Stage
1C). I had a Mastectomy for the former,
and then a Hysterectomy. I did 6 cycles
of platinum chemo (Carboplatin & Paclitaxel) for the OC, which was also expected
to confer some benefit for the BC.
My first post-chemo scan (Oct 2020), showed no evidence of disease (NED) and so
did my 2nd scan in Aug 2021. I was grateful to now be considered sensitive
to platinum chemo, should I ever have a recurrence and need treatment again
down the road – like in 4 or 5 years’ time.
Yet I never really felt “alright”.
I thought I just needed to give myself some more time. I also had terrible back pains – a bone scan
indicated I had degenerative scoliosis and kyphosis, but no indication of any
mets to the bone. So, I tried to soldier
on. Did some physio, went to an
osteopath but the pains kept on and I generally felt drained.
After 1 year of 3-month surveillance checkups, I was put on 6-month surveillance, which made me a little uncomfortable. At my first 6-month checkup in Jan 2022, I was told I did not have to do a scan nor blood work. Had a very hasty physical checkup and that was it. In the meantime, my bloating, constipation, fatigue and back pain kept escalating. My doctors brushed it away, saying degeneration is part of getting on in age and everyone has some degree of issues with their bones.
Before my next 6-monthly checkup with Gyne-Onc (July 2022), I requested referrals for both a CT scan and blood work. I only got them this time because I was having issues with an incisional hernia. My blood work was normal. Shortly after the CT scan, I got a call from Gyne Onc, moving my appointment up by a few days. I was concerned.
I had my appointment yesterday. I’m glad my husband was with me. We were told that my scan showed areas of metastasis. Although I knew all along, I wasn’t really “ok”, to hear that I’m already facing a severe, and possibly multiple areas of recurrence, was a huge blow. The scan found that I very likely have mets to the Liver (multiple hepatic lesions ranging from 5mm to 2cm).
The scan also referenced the presence of lytic lesions within the vertebral body – unclear what these are, but not ruling out mets to the Bones as well. A bone scan has been requested to get a better understanding.
So – that’s my story. ☹ Totally blind sided and still processing. Seems like it always comes in 2s. Two primary cancers and now 2 possible areas of recurrence. The problem at this time is trying to determine whether these are mets from the OC or from the BC. The oncologist asked if I wanted to proceed with Platinum chemo now, assuming it is mets from OC. I need time to think and I want to be sure which disease(s) I am battling this time. I think I would need a biopsy from the lesions in the liver??
More important to me personally, is my daughter’s wedding next month. She is in another province and my husband and I were planning to go up there in a couple of weeks. I want to be there for her in mind and body. She postponed the wedding last year due to Covid and I don’t want anything to ruin it for her this year.
I hope I can get the bone scan and biopsy done and have a plan in place before we leave. I need to be there with her for her special moment. Will come back home and then deal with all the difficult stuff that awaits me. I’m not sure of the prognosis at this time, but I hope and pray I have that luxury of time.
Wondering…Would a bone scan by itself determine if it’s cancer and which one? Is there more in the tool-kit if it is mets from the breast vs ovary? Would a second-opinion from one of the larger provinces be useful (or possible)?
Thank you for any advice.Comments
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@Tinazzie
First, I am sorry to hear you are going through this. It is very difficult news to hear and to process for sure. Even more difficult is if it has taken you by surprise. Anything you are feeling is normal and valid even including anger.
What us your team saying? Have you posed these questions to them yet? If not, perhaps writing them down would help.
Curious as to why the need to know if it is from OC or BC? Do the treatments vary greatly between the two?
I think you should also voice to your team the importance of being present at your daughter's wedding and asking if you can line everything up for when you get back.
It is my knowledge that the bone scan can pick up the lytic lesions but would not differentiate between the cancers.
As for the second opinion in a larger province, I am not sure about that.
Is your team outlining for you the order or importance of anything you have outlined above? Or what next steps might be?
It is so difficult to deal with all of it and to feel that you have been "unheard". Keep at it, write things down and ask your questions.
Hugs to you.1 -
@Tinazzie, hey my friend. I am so very very sorry to hear your latest news. Cancer sucks, that's all I can say which is of no solace to you of course but gives me my daily dose of cursing this disease we all share. And having it all complicated with two cancers to content with and which is now active again...sheesh!
Your questions at the end of your post I can't answer. Save those for your oncologist. But I do feel for you and you desire to be able to share your daughters' special day to the fullest. Were it me, I would make it clear to my oncologist how important that day is and that time you want to spend with her leading up to the wedding, and that emotionally it would be helpful to go know what lies ahead than having questions hanging over your head. Hopefully he/she will understand the importance of your request.
As for a second opinion from a larger cancer centre, I'm sure one could be arranged but let's not get ahead of yourself. Remember how much we've talked about taking it all one step at a time. Let's find out what's spread, and what the treatment plan is. As for your oncologist's suggestion to consider chemo now, I would be asking what the down side would be if it turns out this is not a recurrence of the OVC and is the breast.
Please keep us posted. Come back to our Thursday chats if you're able. It's a good place to blow off steam if you need to. And in the meantime please know our thoughts are with you gal. Lots of good surrounds you right now....this community, a supportive husband, the excitement as your daughter reaches a major milestone in her life and a medical profession loaded with a bag of tricks to help you get through this.
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Thanks so much, @Strongwoman and @Fearless - Vol Mod for reaching out! Still feel a bit like the deer in the headlight - trying to get my head around it all.
Having a few tests lined up in the next couple of weeks so that will be helpful. I was seemingly sensitive to first line chemotherapy for the OC in 2020, so if it is mets from OC, then that is what they'll likely do again. I understand that mets from breast cancer have a few different treatments. So, would like to be sure what I'm up against.
Others who've had the disease in the bones, also had the bone marrow tested to confirm that it was actually OC and not myeloma. This has not yet been included in the treatment plan - but on my list to check.
Thanks again for your support.0 -
@Tinazzie
Checking in to see how you are making out with your testing.0 -
Hi @Strongwoman, thank you for checking in.
Shortly after my last appointment, my husband and I tested positive for Covid! So, unfortunately the other tests had to be moved out, but thankfully, not too long. I've now had a bone scan and a liver biopsy. Now waiting for the results of these to come in - hoping they will both be in next week when I have a phone consult with the Gyne Onc clinic. Hoping to get some answers then. In the meantime I have pushed out our travel dates by a week or so, in case there is anything I can do that may help now, before I go into chemo next month.
Hope all is well with you and thanks for following up.0 -
Hi everyone – wanted to give an update on my situation.
I can’t believe it’s already September and almost 2 months since my last post. In the meantime, I’ve had a liver biopsy, a bone scan – and done a lot of waiting!! But I got to see my daughter get married – and that meant everything to me! I pushed out my travel for the wedding, but got there well in time for the big day, all the pre-wedding engagements, and even a mother-daughter spa date! I was exhausted but kept praying each day for the strength to make it.
A few days before our travel, I got my test results, which were unfortunately not that good – and with some surprises. The liver biopsy showed that the recurrence isn’t from the Ovarian cancer, as suspected, but from the Breast cancer. (I was diagnosed in 2020 with 2 primary cancers). My Gyne-Onc team were just as blindsided as I was by the results and had even booked me for chemo time on my return. I’m hoping there may be options in the way of treatments for metastatic breast cancer. Unfortunately, I have a long wait for the referral to Medical Oncology to come through so no idea yet about possible treatment options. I worry because I feel myself fading and in constant pain in my back. The bone scan showed several areas of uptake along the spine and ribs.
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Oh @Tinazzie I am so sorry to hear your news. You've been through too much H and surprises this past year. I said to my husband yesterday we're going through a Yin and Yang period. Every good thing seems to get followed by something crappy to contend with. But mine challenges are nothing compared to yours hon. I wish I could give you the real hug you so deserve right now but since I believe in kinetic action, I know you can feel it.
But how wonderful you were able to make the wedding and the events leading up to it. I know how much you were praying to be there for your daughter's special day. I'll bet it was lovely and everything you hoped for.
Stay strong. I think I mentioned once before on our chats that I had met a woman at my cancer centre a year or so ago and as we are want to do ended up comparing diagnosis and treatment. She'd been diagnosed with breast, which was dealt with. Then an unlinked case of OVC, dealt with. Then her lungs, and not sure which cancer it was linked to but into radiation and chemo. Then into her brain, dealt with it with radiation and chemo again. And I think there was one more episode. Then I just about fell off my chair when she told me that was all six or seven years ago and she was just in for a regular check up. I would have thought only a miracle could help her....guess I was right. They do exist.
Let me know if there is anything I can do for you gal. In the meantime you're in my heart and my mind.....
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Thanks @Fearless_Moderator. Your support - means a lot to me! And the hugs too! 🤗1
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@Tinazzie
I am so happy to hear that you were able to attend AND enjoy your daughter's special day. That must have meant a lot to you and to your daughter (even if she didn't know what you were going through at the time).
As for what you are feeling especially the back pain, can you call and chat with your oncology team or family doctor to get a medication to help you with that? You shouldn't have to feel like that on a daily basis.
Same with "feeling myself fading". Is this due to fatigue/exhaustion or you feelings you are having that make you feel like this emotionally. Determining that will assist you in finding a solution to that as well.
Take care of YOU, nap, go for a walk and enjoy the things you enjoy while you feel well and are waiting. If you have any symptoms like pain, need someone to talk to etc, reach out to your oncology team or family doctor and see if they can either prescribe a medication or give you a referral to someone.
You have been through a lot and the strength it would have taken to be there for your daughter on her special day and keep the focus on her is admirable. That takes a lot to pull off to show our "good faces" to everyone while we don't feel like that inside.
I will await for you to give us updates in the meantime and reach out here when you need to.
Hugs1
