Hope and advice

megs7014

Hi all. My mom has recently been diagnosed with colon cancer. 3cm in the ascending colon that has spread many mets around her liver and some enlarged lymph nodes.

we a currently waiting for biopsy results. We are in the uk. Whilst the NHS are good. They can also be very negligent. I worry that it has been almost a month since they diagnosed her and no treatment has been offered and nothing urgent even though they confessed their high concern.

I would love for some hopeful stories and advice. Thank you so much in advance.

SandiaBuddy

Self-Advocacy

One of the phrases you will find frequently on this forum is that you must be your own advocate. I have no medical expertise, but it strikes me that a month is way too long to leave your mother in the dark about this matter. If I were in her shoes, I would be working all aspects of the system to get answers. Are there any public advocates or Ombudspeople in the healthcare system? Understandably, the healthcare system is burdened by omicron, but nonetheless, there should at least be communication. Good luck with these challenges.

megs7014

Thanks for your advise. I definitely agree about the self advocacy. She is waiting for the biopsy results but they said they won’t start treatment until jan. I’ve asked her to call soon for the biopsy results as it says two weeks but they usually send out a letter that in the past, has taken over a month. We’re already looking for 2nd opinions with specialist for as soon as she is told her plan and results.

Trubrit

Hello, and welcome to the forum

I am sorry to hear about your mum. It is a frightening time, and it will feel so much better when she starts treatment, because then you are actually doing something.

I hear that the NHS is in a right pickle at the moment. I have a friend there, who was supposed to have emergency surgery last week, but it keeps getting postponed. So much for emergency.

I don't know how much you can push the NHS, but I would definitely give it a try. Bug them until you get what you want.

I am happy to hear you are looking at getting a second opinion.

While the faster the better, as far as getting mum treated, I know the fear is that the Cancer is growing and growing, while you wait; but normally, Cancer is slow growing, so she should be OK for a few more weeks.

Good luck.

Tru

megs7014

Thank you. That makes me feel better. Colon cancer is slow growing but I’m not sure how slow the mets to the liver are. Hopefully it gets sorted quick once the biopsy is bacK.

sorry to hear about your friend. It really is a nightmare for nhs right now

BerniceOB

I am very sorry to hear about your mother's diagnosis. We were in a similar situation this time of the year last year. My husband was diagnosed with stage 4 colon cancer with a met to the liver. He had initially been diagnosed on November 17th and he started chemotherapy on January 4th. I know how difficult the wait is.

I can share with you that after undergoing chemotherapy, radiation, and surgery, he is currently no evidence of disease. I hope that this can give you a bit of hope.

While we were waiting for his chemo, we focused on what we could do nutrition wise to help him stay strong for the treatments that he was going to have. He ate a lot of foods that are considered antioxidants. However, during chemo they told him not to eat antioxidants because they did not want it to interfere with the chemo.

One story that gave us hope was country music singer Wade Hayes. He battled stage 4 colon cancer and has been cancer free since 2013. Although, every person is unique to how their body reacts to chemotherapy, it helped us tremendously to try and focus on our future and try to remain as positive as we could.

I hope this help you a bit. You and your mom will be in our thoughts!

megs7014

I’m really glad to hear that, congrats to you both!

the wait is worrying especially because they sent her home with no advice or information at all.

it does give me hope, sorry to ask but did your husband have many mets? Or lymph nodes?

I have looked at Wade Hayes! It’s really good and I hope many people carry on like that!

best wishes to you both xx

BerniceOB

Feel free to ask me any questions and I will answer to the best of my ability.

My husband did have mets in the lymph nodes, a met to the liver, and some near the base of his spine. Initially they were going to do the surgery first but they decided to do the chemotherapy to help stop the spread.

Once he started chemo, he had a difficult time and his chemo was delayed on several occasions due to elevated liver enzymes. I mention this not to worry you because many individuals go through chemo and don't get delays. However, many can get delays. The delays in his chemo left me with many sleepless nights but we still ended up with a good outcome.

He did go through chemotherapy, radiation, chemo pills while on radiation, and he finally had his surgery in September. He does have a permanent stoma now and he is still healing from his surgery but getting stronger every day.

best wishes to you and your mom. We will be thinking of you. xx

megs7014

Thank you very much for your kindness and wishes and I’ll be sure to fire any questions that pop up, wishing nothing but good health for you and your husband and hope everything is all good! Xx