Got 1 year clear a month ago but 2 weeks later found mets in my pelvis

[Blossomstix]

I am so devastated as after having my 1 year ct scan (exactly 1 year after my oesophagectomy) I was given the all clear they have found mets to the acetabulum of my pelvis.

I know the statistical odds were against me but I was feeling and doing well (even managed to ski 6 months post-op) except for a pain in my glutes which I thought was sciatica.

Did some physio but when it didn't improve he said I should see my go and so referred my to orthopaedic and I did an MRI. The shock of finding a lesion as bone mets is not common in OC. Confirmed by pet scan.

Depending on my prognosis I will likely have a total cemented hip replacement (6 hour op) followed by radiation (already had 25 of those last year together with 8 rounds of chemo) giving me limited mobility (I am very flexible and once a dancer).

I am 54 years old with a 12 year old son - that is the worst of it - not knowing if I'll see him be old enough to be without a mother.

Any experience or words of wisdom would be most appreciated.

[Hidden]

The fear of recurrence or cancer spread is something that sits on everyone's shoulder who has had treatment for cancer. The only thing I can say is that I know of one lady who had a recurrence many years afterwards, and it was a second diagnosis of oesophageal cancer but her treatment was successful. So I do hope that your treatment will also be successful.

Nobody is old enough to be without a mother really, but your love for each other will be there regardless.

[lynnbibb in reply to Hidden]

Hi Blossomstix,

I am so sorry to hear of your diagnosis, something I think cancer survivors and their families all dread happening.

We know of 2 people who have had recurrences after IL surgery, both are here to tell the tale. Although incredibly dofficult, try to face each day as a new one and face it one step at a time. Our thoughts and best wishes are very much with you and your family. Good luck from Dave and myself xxx

Lynn xxx

[Blossomstix in reply to Hidden]

Thank you Alan. I admire how you respond with such care to everyone and thank you for the hopeful story.

[Blossomstix in reply to Hidden]

Thank you Alan. I admire how you respond with such care to everyone and thank you for the hopeful story.

Reply

[Jennyretro]

Dear Blossomstix

I really felt for you when I read your latest post. You sent me a lovely encouraging reply a couple of months ago when I was in two minds about the total gastrectomy offered to me. I did go ahead and have the surgery in the end.

To undergo more surgery after everything you have been through must be so difficult to deal with - but if they are offering you the surgery then I assume they think it is of benefit to you and it would give you more time with your son, so it has to be worth it.

Thinking of you and sending you a hug

Jennifer x

[Blossomstix in reply to Jennyretro]

Dear Jennifer

Thanks so much and I am glad you went ahead. How are you doing?

K x

[Jennyretro in reply to Blossomstix]

Not too bad. I am one month post surgery, so still early days with eating. Have fluid on the lungs and have been short of breath which is quite tough.

Had some of my results last week. They are a bit of a mixed bag. Surgeon initially very optimistic as primary had shrunk considerably but path results showed it still to be stage 3. I am still waiting for results of the abdominal lining, which is the key result as this is where the cancer had spread to initially.

Had good news re lymph nodes as they were all clear.

Had my appendix removed during surgery as well as slightly enlarged and they thought I might have an infection but to my surprise I had another form of cancer - good news is that is was a type of pre cancer but still a shock as it wasn’t connected to original cancer!

Seeing Oncologist next Monday who should have my final results. Looks like I may need more chemo and not looking forward to that.

Surgeon is saying that he hopes he has brought me more time, not quite sure what to make of it all.

When will you find out more about your situation?

Jennifer x

[Blossomstix in reply to Jennyretro]

Hi Jennifer

Lungs fluid sounds really unpleasant. I had chemo rad to mine as well as the oesophagectomy and had 2 bouts of pneumonic post op so also struggled with breathing. Felt tight for about 6 months but will eventually get better for you I am sure of that. I assume they are telling you to nebulise.

Glad about your lymph nodes. Confused about your status of your cancer as stage 3 is usually to do with lymph node spread but not mets (that is stage 4) - histology normally looks at whether its poorly differentiated, etc. Does he mean that your surgical margins (area past the cancer) were not clear? Anyway at least they have removed it and your lymph nodes are clear. I so hope the abdominal lining is clear! Luckily they took out your appendix and thankfully you don't need it!

I know the chemo is dreadful (my oncologist threw that one at me yesterday as well as first, total hip replacement surgery (cemented version so they can radiate afterwards) , then radiation (only 10 days so not so bad) then possibly 4 months of chemo - horrors) beyond all words so I know how that must make you feel. And even though every part of your mind and body resists the concept of doing it - I think I will end up doing it as I am not ready to give up yet! I had every side effects going and really bad neuropathy but I kept my hair - used the cold cap. They may likely change the mix for you considering your histology results.

Don't give up hope yet. And please let me know about your other results. You've come this far already.

Hugs

[Jennyretro in reply to Blossomstix]

Thanks Blossomstix

Unfortunately I only had about 5 mins with my surgeon last week as he was in a rush and I wasn’t entirely clear on everything he said. Hopefully my Oncologist will explain everything on Monday.

Completely understand your mind and body wanting to resist the treatment, especially as you have so much to go through but you can’t give up and as you mentioned, you have come so far too! I have wanted to give up a few times but my mind seems to drag me back each time, not easy though.

Hope they do change the chemo meds. I had 5 months of oxaliplatin and although I do not have the neuropathy like yourself, it has badly damaged my veins in my arms.

Take care and I will let you know the rest of my results. By the way, will your surgery be before Xmas?

Jennifer x

[Blossomstix in reply to Jennyretro]

Hi yes. Surgery is Sat 25 November and I think radiation about 2 weeks later. Keep me posted. X

[duchess__of_peru in reply to Blossomstix]

Blossomstix we are extra sticks under your blossom. We are your network. You know it takes a village to raise a boy. I live in Galveston, Texas with our famous sunny beaches. You can come here in reality 🏖and major hospitals nearby. Get a map. Put push pins in it for all of us. We will be your landing net. There are miracles everyday. Look how far you've come.

[duchess__of_peru in reply to duchess__of_peru]

Last week I was told (1) you have an anuerysm ,(2) you had a heart attack, and (3) you had a stroke. Next day they said none of the above see you next week for surgery. Come to find out all of my small intestines were packed in a hernia.

[Blossomstix in reply to duchess__of_peru]

Thank you Duchess.

[gwood80]

Nothing I can add but wanted you to know I'm thinking about you

[Blossomstix in reply to gwood80]

Hi Gwood

Much appreciated and take care