First Recurrence : (

[Luci22]

Feeling like sh*t today. My mom's cancer appears to be back. Her diagnosis is 3B high grade OC. She did well after firstline treatment - it's been 3 years since her firstline treatment ended, but it's back and I didn't think I'd have to write about it again.

Her onc. just called that her CT shows it in some lymph nodes, several, some large. I hate that they wait so long to call, the CT was done 2 weeks ago. Now he's planning to see her in clinic in one month. Is this timeline right? Does this seem to be waiting too long? He also told her to book the Covid Vaccine asap so I rushed to book it and the earliest date we got was April 9th. It's the Pfizer one, so it's 2 doses and she'll have to wait several weeks between. I don't understand any of the timing here.

He said she'll most likely do chemo again and maybe surgery. She was on a good run, but guess we are here.

Anyone have any advice or words for a daughter and mom who are experiencing a first recurrence?

Thank you to all, stay well.

Luci

[Lyndy]

Hi Luci22Take a breath....while no one wants a recurrence, the important thing is that it’s treatable and your Mom’s oncologist is getting a plan together.

You don’t say if she has any symptoms...if not then they may wait for her to be symptomatic. So don’t stress over the time scale. I was encouraged to get the Covid jab during chemo, so it’s good news that she has an appointment. I would talk to the oncologist to see if you can shorten the time between jabs but I have to say, I didn’t manage to get my second one any earlier.

She will need to be very careful while her immunity is down...so that’s something to focus on as a family. Best of luck to you and her xx

[Luci22 in reply to Lyndy]

Hi Lyndy,Thank you for the reassuring reply. I am trying to breathe, I saw my mom yesterday and she looked sad, and disappointed.

There have been symptoms that I sensed were something for a while but they weren't the usual ones. She would get very cold, shake like having a fever but no raised temperature. Other days she was a bit sweaty and hot for no reason. We notice her muscle mass is dropping in her arms. She started to gain weight on the scale without trying to.

I am trying to get in touch with the onc. as her English isn't that great so I hope to get more clarity. I want to let him know about these symptoms.

I don't quite understand what it means if it's in the lymph nodes.

Thanks for your support.

Luci

[ruthg55]

Hi Luci,

So sorry to hear that your Mum (& you) have to face this. A recurrence is very, very hard to accept. I know how you both must be feeling. In some ways it can feel worse than initial diagnosis. I felt so down when I had mine, also 3yrs since first diagnosis (HG 3A, non BRCA). But I was told since I had a good 3yrs cancer-free, then treatment can be just as successful. So that is something positive to focus on. My recurrence was also in a lymph node (para aortic about 3cms in size). I had surgery to remove it (it was major) with no further treatment - that was in July 2018.

I know you are worrying about the time delay, but in my case, my recurrence was confirmed (by PET scan & rise in CA125) two months before I had surgery. So I'm not sure if a few weeks makes a lot of difference. If this is really worrying you I would follow up with your Mum's oncology team and let them know. (Strangely, my concern - as I was wheeled into the operating theatre - was, what if my lymph node had managed to get rid of the cancer in the preceding two months and I was about to have this major operation for nothing.) Turned out I didn't need to worry about that as yes the cancer LN was still there, but hadn't grown any bigger in the two month waiting period.

I know I've read on here before of other women who have it in lymph nodes but it's being monitored by scans. Hope you get some more replies to confirm this.

You must be great support to your Mum. Wishing for the best possible outcome. Remember your Mum has had a good 3yrs and here's to many more.

Ruth xx

[Luci22 in reply to ruthg55]

Hi Ruth,

I appreciate your reply and sharing your story. The doctor did seem "calm" on the phone with her and said it's good news that she had 3 years NED. But he said it's in several nodes and some are quite large. I don't see why she should wait to just discuss it more in a month. I have left them a message so I can ask more.

It's a very defeated feeling though. I was praying for the 5 year mark and onward - as I'm sure all are.

What does it mean if it's in the lymph node? My mom's English is not so great and she thought it means she has lymphoma. Is that different?

Thank you again, I'm trying to stay positive for my mom.

[Katmal-UK]

Hi Luci I was diagnosed 3B in October 2007 and despite 2 recurrences still here albeit on Olaparib but I have been NED now for 7 years 7 months. After both recurrences I stated chemo within a week but not all oncologists do the same. If you feel 1 month is too long then try asking for an appointment earlier. I for one could not have waited that long. Is your Mum BRAC positive? Big hug to you both. Kathy xx

[Luci22 in reply to Katmal-UK]

Hi Kathy,

My mom is BRAC negative. She has a BRIP1 mutation though but that doesn't seem to matter to the onc. in terms of parps.

When you had your recurrences, did you have a lot of symptoms? Where did the cancer return to? I'm worried about it being in her lymph nodes. I don't understand that.

Lucky you for having reached 7 years 7 months. Thank you for taking time to respond. I'm feeling drained but a bit better with the support here.

Luci

[delia2]

Hi. As far as I can ascertain OC in lymph nodes is not a terrible sign like it is in breast cancer. It seems to grow more slowly. It would be entirely different if it were lymphoma. Odds are it’s OC metastasized. Surgery would be a great option. They would only do it if they could get it all. The fact that she had three years ned is excellent. I hope you can talk to her oncologist. Xx

[Luci22 in reply to delia2]

Hi Delia,

I do hope you're right. I've tried to search more info while I wait to hear from the onc. Now it's the Easter long weekend so I'll be waiting till Tuesday.

The report I read said she would be a surgery candidate, but she is worried about another surgery. If that's the best option then that is good to know.

Just wish this all would go away.

Thank you for your message,

Luci

[Tulips66]

Hi Luci, I finished chemo in July 2019 & continued on maintenance treatment till early Sept 2020. Two weeks later I had a CT scan which like your mam showed lymph nodes had increased in size in my groin. Two weeks later I had a biopsy & results showed it was back, I was gutted. I had an op early Dec & there was cancer in 6 nodes. I started chemo again last week. I know your anxious about the delay in the consultant seeing your mam but as you can see my time line was quite similar & as my young daughter said its great news that they have a plan & it's treatable so stay positive & you will be amazed how quick the time goes before your mams appointment. I wish her all the best & keep us updated 🌸

[Luci22 in reply to Tulips66]

Hi, thank you for your words and sharing your experience.

I just read the report which shows several nodes increased in size. Is there ever a time that they are not actually cancerous?

Also how was your recovery post surgery? Was it done by laporoscopy?

Thank you,

Luci

[Tulips66 in reply to Luci22]

Hi Luci, no unfortunately it wasn't a laparoscopy & my gynaecologist had warned me that once the lymph glands are removed there would be a high chance I would get an infection & he was right I did. I had a drain from the wound for Christmas so it wasn't pleasant but I eventually bounced back & I am back walking 6kms everyday & feeling good except for the few days after the chemo & it's amazing how your body heals so quickly. If your mam does have surgery again she too will recover from it & you have to try & be strong for her Xx

[Luci22 in reply to Tulips66]

Thank you for your positive words and guidance. So great for you that you're back to your walking and feeling well. I will try to be strong with her.

Last question was your treatment in the UK or US?

Thank you.

[Tulips66 in reply to Luci22]

Hi, I hope your mam will also find the strength to continue fighting. My treatment is in Ireland. All the best & keep us updated X

[Luci22]

Hi there, just an update here and some questions as we are still confused what is next.

We had a follow up with the oncologist. So far there is no treatment date set. Apparently the lymph nodes are slightly enlarged and it's "likely" a recurrence. I didn't get a sense of urgency but when there's a probable recurrence, isn't it all about treating it "the sooner the better?" We are on wait and see and another CT will be done. I'm wondering why wait, I didn't get a chance to ask. Has anyone had a similar experience to wait and see?

One lady told me she was getting radiation on her enlarged lymph node so I asked if that was an option but oncologist right away said no. I'm not sure why the answers are different. Still confused overall and feeling helpless, I want to help my mom get through this next wave.

[SophiaMariaA in reply to Luci22]

Hi Luci - Sorry to hear about your Mum's recurrence. Your oncologist will recommend what is the next best step - watch and wait or surgery/chemo. I'm not a Dr. (just spend a lot of time with them as we all do and I ask a lot of questions) but based on what you've written, I'd say that the lymph are likely not causing your Mum any trouble at present (did he say by how much they are enlarged?) and that there is no cancer in any other area/organ. That's good (enough) news.

The Dr. may be waiting to see what happens with the lymph or waiting to schedule a biopsy, etc. prior to recommending treatment. Based on the studies I've read, early treatment of recurrence does little to prolong overall survival (which can be many years so don't panic) so waiting is not too risky at this point. Weighing whether to begin treatment now (more chemo - how did your Mum do in her first round?) or to wait can be a quality of life decision as much as a disease treatment decision. Trust the Doctor (assuming you have confidence in the way your Mum was treated originally) and the process.

You are a loving and caring daughter and it is clear how much you want to be there for your Mum. Spending time with her (on the phone or in person) and listening to her concerns/worries, etc. is important and so helpful. Learning what others have experienced, what the trends in treatment are, and how to deal with this disease helps - but truthfully, only a bit. Your Mum's disease is as unique to her as you are and only the Drs, with their experience, training and resources can determine what is technologically best and then, your Mum and your family can determine what happens next.

Wishing her the best and wishing you peace and strength as you demonstrate your love by supporting her.

PS - With regard to radiation - again trust the Dr - however, I've heard that it is very risky in going after lymph as they are so small. Whilst the radiation may shrink the growth, it may also damage other organs/tissues in the area so maybe too risky and not the route first taken.

[Sashay2020]

Hi Luci. I have been reading your posts. I’m sorry you and your mom are having to face a recurrence, but I am so glad your mom was in remission for three years. I spend a lot of time reading medical journals, study results. I share the good bits with my daughter. She is my only child and has really been there for me, just as you have been for your mum. My daughter lived in a different state than me, but she came to stay with me right before my debulking surgery and throughout my front-line chemo. A couple of months after I finished chemo and when I was feeling better, she leased her own apartment about fifteen minutes away from me. I miss her, but am glad she got her own place because it helps her lead a normal life. I know she is concerned for me, but I worry about her quality of life. You are an amazing woman, Luci. Your mom is fortunate to have you. Please take care of yourself. Be sure you find time to do things you enjoy. My daughter has no siblings, but she has two friends since high school who also have moms who are living with cancer. I know she can unburden herself with them. I do hope you have someone to talk with about the challenges you and your mom are facing. You are such a lovely person! Please take good care of your body and your spirit and keep us posted. Best wishes from Louisiana,

Sashay

[Luci22 in reply to Sashay2020]

Sorry my rely is so late but I thank you for all your kind words. I'm glad you're daughter was there for you as well. That's a beautiful thing. We love our moms and would do anything. 💖Best wishes xo