Secondary and New Cancer

[Notknowmuch]

My husband’s blood tests, CT and PET scans revealed tumours in liver, lung, spots on bones and ‘hot spots’ around his previous oesophagus site! Oncologist needs to do a biopsy down the gut to determine treatment plan after my husband gets his redult from tomorrow’s bronchoscopy down the gut. Unfortunately these symptoms are likely to be secondary cancer from his initial oesophagus cancer.

Additionally, he was experiencing pain in his mouth (said he felt his tongue is swollen and feels tender at the back of his mouth and painful to swallow). The oncologist said this could be a ‘new’ cancer and unusual site to be a secondary cancer from the oesophagus.

The words worried, sad and devastated aren’t enough to express our disappointment especially when my husbsnd was 18 months post IL op snd was recovering very well in his new norm.

Has anyone gone through similar situation or journey?

[liz_crisp]

Hi Notknowmuch, I am sorry to hear your difficult news. That is disappointing news, There is a group called Charlie’s circle on here which is a sister group to this it was set up for patients who had secondary cancers turn up and you may find some helpful advice there as well, if you search for Charlie’s circle in the search bar on the home page you should find them. Big hugs to you, good luck with the Oncologist Lizzy

[Notknowmuch in reply to liz_crisp]

Thank you liz_crisp for your well wishes and the the info provided.

I tried but result was ‘no site found’! I’ll try again.

Take care.

[Deeedals]

Sorry to hear the news about your husbands recent test results. Sending best wishes to you both for your continuing journey . Dee

[Notknowmuch]

Thank you Deedals. My husband is now in hospital having a bronchoscope/biopsy.

This morning he also had a consultation with the ENT specialist regarding next week’s MRI on his mouth and throat.

We have an army supporting us in prayers.

Stay safe.

[MathewHerbert]

Hi NotKnowMuch. Wife has had a very similar experience in terms of secondary sites for cancer post op. We also had the same emotions when we found out about the news. It has felt like a roller coaster in terms of the positive results from surgery and then the difficult news when doing scans and subsequent follow ups. Unfortunately, my wife has not responded all that well to the treatment and her health continues to deteriorate. I just wanted to let you know that there are others who have gone, or are going through something similar and wanted to wish you and the husband the best with the treatment and recovery. Good luck.

[Notknowmuch in reply to MathewHerbert]

Hi MathewHerbert,Thank you for responding to my post.

Sorry to hear of your situation and I’ll be praying that you and your wife finds comfort and strength to soldier on.

All the best and take care.

[telford-hiker]

I’m so sorry to read this ,I really hope there is a treatment plan..I seem to remember we maybe on the same time scan ..please keep us posted

[Notknowmuch in reply to telford-hiker]

Hi telford-hiker,

Thanks for your well wishes. Wishing you good health.

Yes I do remember that your IL surgery was around the time of my husband’s (19 months post op now) and that you were walking very early in your recovery.

We’ll get the bronchoscopy/biopsy result end of the week a then MRI appt next Tues. With these 2 results oncologist will still need to do biopsy on mouth to determine if the mouth cancer is a secondary or primary cancer.

Only then we’ll meet with oncologist to see if treatable.

[telford-hiker in reply to Notknowmuch]

How as it come about..I’ve not got an appointment till February and it’s only a visual ,the the closer it gets to 2 years the more I worry that it will go wrong,I don’t think many people know what shadows we live under..I really hope everything works out for you ..🙏🏻

[Brett77]

Hi, sorry to hear this. It’s worth keeping in mind there are treatment options for systemic / spread disease. There was a study (checkmate) a year or so ago that showed folfox chemo + immuno therapy such as nivolumab have resulted in improved treatment outcomes. Of course the range of responses is wide as is the case with any cancer treatment. I’m sure your oncologist will cover this with you. Hopefully your husband will have a great response. Best wishes.

[Notknowmuch in reply to Brett77]

Hi Brett77,Yes, the oncologist did mention a new chemo/immuno therapy which was available since last year.

Yes we are optimistic and have high hopes that my husband will beat this too.

Could you please gi e me the details of the dietician you mentioned in one of your responses? I would need advice on my husband’s diet to strengthen him in preparation gor ehat’s ahead.

Appreciate your well wishes.

[Notknowmuch]

Yes if feeling any pain, weight lose, or swallowing issues…. need to immediately seek medical attention and not put up with it or think it is to be expected.

2 months ago (Oct 2021) my husband was finding difficulty eating his small six meals (like his already small capacity was becoming even smaller) and he put up with it and was losing weight which we assumed it was only natural as he was eating even lesser amounts.

Also we weren’t alarmed because we thought we’ll discuss these issues at the up-coming surgeon’s follow-up appoint in early Dec 2021.

Once the surgeon heard my husband’s description of the issues and after examination, he immediately ordered blood tests, CT and PET scans, which led to our current procedures to attend.

It was unfortunate that all these happened around the holiday season so most medical consultants were not available.

However, we are still very blessed that we were able to get some procedures started and hereon we will be progressing to oncologist appt to see what’s next.

We are trying to be positive and hopeful even though there are sometimes low moments.

[Janashlin]

Very sorry to hear this update but really glad to hear how positive you are sounding. I still say a positive attitude makes such a big difference. Wishing you both all the best. Keeps going, keep going.

[Notknowmuch]

Thank you Janashlin. At the moment we are each other’s ‘cheer leader’. Yes, we can only try to be positive as an option.

I pray that my faith in God is sufficient for us to stay strong to overcome any setback.

Wishing you good health!

[Helenmick]

Good morning, I’ve just read your post and unfortunately it seems a lot of recurrence start around 18-24 months. My husbands came back 21 months after the post IL . Devastated wasn’t the word as we had just got used to the new normal and everything was going well. His recurrence came near his original site and in kidneys this was 4 years ago and didn’t get chance for anymore treatment but I do know that so much has changed in the past 4 years and new treatment regimes are working so well. Good luck keep us posted we are here for support xx

[Kentishred]

I'm sorry to hear about your husband's new cancer sites. I have no information to share with you but whish for you both a good outcome. I have you in my prayersLoraine

[Notknowmuch in reply to Kentishred]

Hi Kentishred. Prayers are priceless, thank you and take care.

[hunsdon]

Hi so sorry to hear such sad news my heart goes out to you and your husband , sending lots of strength ❤️ and prays 🙏

[Notknowmuch in reply to hunsdon]

Thank you Hunsdon for your prayers and kind thoughts, much appreciated.

Take care.

[hunsdon in reply to Notknowmuch]

Your more than well come please keep in touch x