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 worse. A lot worse. I didn’t know the “beasts” then, but I do now. Yes, I say beasts, 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 so grateful that I was now considered sensitive to platinum chemotherapy, 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 generally felt drained.
After just 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 always 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 it 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 disappointment. 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 not really processing. 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 importantly 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. Be there to support her in her special moment, and then come back home and 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…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)?
I can not imagine what you are feeling. When I got my initial diagnosis of breast cancer I thought it was really fortunate that it was not one of those chronic diseases. A few months and I would be back at work with all threats to my health eradicated. 10 months later I am no closer to my old life than I was then. I know what you mean when you say you ‘know the beasts‘.
I lived in PEI for a few years and we were always sent to NS for major medical issues. I’m not sure where you could be referred to. It does sound like there is far more exploration necessary to even know which beast you are dealing with. My heart goes out to you.
I am sorry that you are going through this. Yes, I agree…once you know the beast(s), it is more difficult to know that they have made another appearance.
I hope you get the answers you need to give you some peace. I think a second opinion wouldn't hurt.
I also hope that you can manage to put your fears and worries to the side while you enjoy your daughter's wedding.
@Tizzie 2020 I have tears in my eyes as I read your post. I am so sorry you received this news. I would definitely ask for a second opinion and perhaps a consult with a gyne and/or breast oncologist in another province would be beneficial even if it is by phone.
I love the idea of going to your daughters wedding and dealing with the cancer when you get back. I hope that will all work out for you.
Reach out if you need anything. Sending hugs to you my friend. ❤️
oh my goodness, thank you dear Tizzie for sharing your story with us.
I guess it's time to pull out your treatment notepad and list all of these questions; the next time you speak/see the nurses/docs make sure you get each one answered!
the info specialists at CCC might be good resources for you also.
1-888-939-3333 or avail on the webpage.
connect with someone there to explore some of your possibilities.
and I agree with other community members who say: go----enjoy the wedding and then come back refreshed, revitalized and full of the love that only your family can heap upon you; ready to tackle the next chapters of your cancer story.
let us know how things move along, we are here, we are listening.
Yes, I'd been leaning towards going on the trip first and then dealing with the rest later when I return. Now, just to add a little more wild cards to the situation….my husband and me tested positive for Covid 3 days ago!! I had a biopsy and bone scan scheduled for next week, but I'm not sure now whether these will go ahead as planned. I don't want to carry the virus into a hospital setting. I have left messages with both departments, so waiting to hear back.
Thanks again for your support.
oh no! it doesn't rain, it POURS….
I have had more friends and acquaintances test positive in these last few weeks than the last year all together…..so much for this being ‘over’.
I hope it doesnt impact your diagnostics and biopsy for too long.
keep us in the loop; I will send ALL my good vibes that you suffer little and recover completely from COVID infection.
Hi, I’ve had some time to take a few deep breaths and try to focus and make sense of everything. Covid also threw a few wrenches in moving forward. But this week I have had a liver biopsy (to determine if the mets are from breast or ovarian cancer) and a bone scan (to determine if the lesions on the spine seen on the CT scan appear to be malignant). One of the Gyne oncologists suggested booking me in for chemo shortly (same platinum chemo that I received for the OC in 2020), but I think I am going to defer it at this time. I think I would like to better understand the situation first, and also speak with a breast oncologist, as there could be other more appropriate treatments if it is breast cancer? I don’t actually have a breast oncologist at this time, as I was transitioned to my family doctor after initial treatment.
Still planning to travel to Ontario for my daughter’s wedding next month, but may have to adjust how long I stay. My mind is still reeling from how I went from Stage 1 to Stage 4 in less than 2 years. But I guess this is part of what makes this disease what it is – it is so very complex.
@Mammabear , @KTA and @moth , I hope you don’t mind me reaching out to you, as I think you too have recurrent Stage 4 BC, and wondering if you might be open to sharing what your treatment regime is/was? Would be happy to chat privately too if you prefer.
Thanks everyone for your best wishes and support.
I was just going to check in with you when I saw this latest post. I am glad you were able to get the biopsy and scan done. Hopefully you are recovering from covid ok. I like the idea of gathering all the info you can to make an informed decision for yourself. And happy to see you reach out to some of our other members too.
I wish you the very best with your plans for your daughter's wedding and hope it is full of love and good times.
@Tizzie 2020 I am so sorry you are going through this - it completely sucks.
My BC came back 4.5 years after first diagnosis. I had few symptoms. When found my liver was ‘fully involved’ and ‘failing’. I had ‘days’ to start chemo or there would have been ‘no treatment options’. Those quotes are from my Onc after the CT report.
I had abdominal pain on a Monday, went to ED, had an US and was told my cancer had spread. Had CT Wed, saw Onc on Thursday, liver biopsy Friday and was admitted Friday night to start chemo Sat & Sunday. They assumed it was same type of BC so started treatment based on that given the state of my liver. Biopsy later confirmed that it was the same BC type in my liver.
My BC is triple positive so I started on Herceptin and Pertuzumab every 3 weeks but Taxol weekly. My liver could not process the standard dose of Taxol every three weeks or docitaxol which is the other standard protocol so I was put on a smaller weekly dose of Taxol. That went on for 4.5 months with weekly chemo. It was harsh. That was 3 years ago. I am 58.
Onc promised that the cancer would react quickly to chemo and it did. Liver improved almost immediately. I am not NED. My liver still has mets but they aren't growing (or shrinking). My liver function is good. Apparently you can live and manage quite fine with only a small portion of your liver working well.
I continue to have herceptin and pertuzumab every three weeks (infusion) for the HER2+ and will for life (or until it stops working I guess). I take letrozol daily for the ER+. Easily tolerated.
It was a terrifying ride. But now I eat, drink (in moderation), exercise and work full-time. Am I my old self? NOPE! I get tired. I have regular blood work, scans every 4 months and worry that it will start growing again every frickin day. Living with stage 4 is living with a death sentence over your head waiting for the other shoe to drop and s*** to go sideways.
Best of luck in this new chapter. Enjoy the wedding. If s*** really goes sideways it will be the memories that are most important. If your liver isn't failing I don't think a few week delay will really matter but that is a question for your medical team.
@Mammabear and @Tizzie 2020
Thank you both for sharing your experiences. It was confirmed yesterday by my oncologist that my BC is now camping out in my lungs. Three months ago there was no evidence of cancer there. We are exploring treatment options.
I knew going into the appointment what news would be delivered although I have no symptoms. My oncologist was sure the CT scans would be clear and was surprised. He said it is very common in his experience that the patient knows first. Interesting 🤨
@Mammabear, thanks so much for your honest and open response. I totally understand the feelings you describe. I'm so glad you were able to handle the recurrence and look it bravely in the eye! :) Yes, there'll always be that looking over the shoulder, but so happy for you that you are where you are and inspiring others on the way.
I am ER/PR positive and HER2 negative. Not sure yet what treatment(s) may be offered to me. I'm quite worried about the possibility of mets to the bone, as I'm already in a lot of pain along the spine and pelvis. Guess, we have to just wait and see.
@Mosi, so sorry to hear about the recent diagnosis. How are you feeling? Did the oncologist discuss a new approach or treatment options?
Thank you @moth for reaching out. As mentioned above, I am ER/PR+ and HER-2.
I'll tag onto Mammabear's post because we have a similar cancer and similar treatment. I had my recurrance about 3 years after initial diagnosis, and started on - I thought it was paclitaxel but maybe another of the “taxols” - and herceptin plus pertuzumab. Like mammabear I am triple positive. I was not able to take the pertuzumab due to adverse reactions. I did a second line of treatment that I don't remember (seems I don't remember very well!) and did that until I had an MRI that showed 3 brain tumours. I had surgery, radiation, and switched to a different treatment to work on the brain tumours as the others do not work on those mets. I am still on this third line of treatment Kadcyla (herceptin) on the HER2+ every three weeks, Tucatinib daily and Capecetabine - two weeks on, one week off - on the others, and Letrozole daily. My tumours are shrinking or stable, and all is going fairly well. Like mammabear, I work (although for me only part time), we are getting ready for a camping trip, and I live my life. Lots of naps as I, like most of us, am tired much of the time.
enjoy the wedding :-) memories are most important I think, and continuing to make good ones is a step forward every day. <3
Hi Tizzie. I read a post from you this morning, and when I went to reply it had disappeared.
I read back in this thread and now understand you have two cancers to deal with. I hope you are able to get information and treatment recommendations soon re the possibility of breast cancer recurrence vs the Ovarian.
I went through a recurrence of my Stage IV cancer (unknown primary) and could not wait for the treatments to be assessed and begin for me. I was put on an immunotherapy clinical trial, as the oncology team did not want to operate a 4th tine. The immunotherapy failed, and I was fortunate that the timely surgery worked. I remain on surveillance at this time.
I understand your daughter's wedding is an important event, and I hope treatment plans can be assessed and put into motion in a timely manner.
The earlier we can get recommended and needed treatments put into motion, the better chance we have of controlling the cancer. Perhaps treatment could begin prior to the wedding and continue afterwards upon your return.
Hope this helps. Keep well
@KTA Thank you so much for your response!
It’s great to hear how well you’re doing and coping with this disease.
I have still not received the results of the liver biopsy or bone scan but hoping to in the next couple of days. I have decided in the meantime, to postpone the potential chemo until after the wedding (end of Aug/early Sep). However, the pain in my back continues to increase and is starting to impact some movements. Was wondering if you had any targeted treatment for your mets to the bone, as you did with the brain, or was it part of the systemic treatment to the liver?
Thanks very much. I hope all goes well with the camping trip!
@ACH2015 thanks for reaching out. My (edited) post from the morning is up again!
I was hoping to have some answers by this point, but do not as yet. I think part of it is due to summer shortages in the system. I also haven't had the opportunity of seeing the same oncologist for the last 3 or 4 visits.
I guess I'm not extremely comfortably to hear that it is likely ovarian cancer or that the 2 mets are in all likelihood from the same primary cancer. I've had issues with back pain even before the 2 cancer diagnosis in 2020. After the 2 surgeries and chemo, the pain and discomfort in the back went up many notches. I've had several scans over the last few years, and each of them noted degeneration in the spine at different points. All the physicians who looked at the scans, brushed it off as ‘part of the aging process’ even though I wasn't quite 60 years old then. Anyway, that's why I actually wanted to know if this might have already been there (another primary cancer?) earlier - and isnt necessarily mets to the bone. I don't know how much a difference it makes, but I've read that secondary bone cancer is treated differently from primary bone cancer.
I did (do) have targeted therapy for the bone mets. I started with pamidronate infusion every 3 months, and then a few months ago switched to zolenic (something like that) acid. Zolodenic? Someone correct me! Same type of drug but the infusion time is very short so a bit more convenient. My bone mets appear to be healing themselves or so I'm told. i don't have side effects to speak of, but I do find it difficult to separate - what are side effects from Zoledronic acid (is that it?? ha) and what are related to the capecetabine, or the tucatinib, etc. I am mostly tired, as is common.
I hope that helps!