I am curious if anyone else has experienced Poorly differentiated Neuroendocrine small cell carcinoma?
Last June they found this rare aggressive cancer in my rectum. The Drs were all shocked as it is never found there. Usually in the lung.
i am thankful that the treatment worked and I am in remission. I have a temporary Ileostomy which is getting reversed in April.
This cancer has a high risk of returning and trying not to think about it.
I was diagnosed with large cell neuroendocrine cancer of the cervix is dec. The NET responded very well to radiation, almost completely gone so I was devastated to learn my ct scan shows a 4 mm nodule in my left lung. Stage 4. I didn’t do the recommended biopsy as dr all agreed it’s cancer & to do so would delay my aggressive chemo. The dr said I am no longer curable and that even if I respond well to chemo “it always comes back”...it’s hard enough knowing I’m in stage 4 but to have the dr offer zero hope was beyond devastating & overwhelming. I’m just trying to take it one day at a time but easier said than done. I hope your surgery went well.
I saw your post, and want to share I was equally devastated by my first oncologist that offered "you have 3 to six months to live, and there is nothing I can do for you". Well, that was July 2016. The new team that took over shortly afterward were more inclined to offer treatment with this caveat. "I can treat you, but I can't cure you". A very different perspective shared and inspiration toward moving forward. My situation was / is Metastatic Adenocarcinoma Stage IV Unknown Primary Cancer.
I was and am fortunate, because although I suffered a recurrence in 2017, that too has been dealt with, and I resumed surveillance afterward. I'd suggest you get a second opinion. There may be treatments (including clinical trials) that can offer you a similar path. Your willingness to seek and try other options Treatments for neuroendocrine tumours (NETs) is a link from the Canadian Cancer Society. It talks about many aspects of NET's.
Some doctors are better than others in sharing and describing a patients situation. Yours does not fall into the positive side of sharing, but understand many doctors look at disease as an entity - and don't consider the patients feelings and mental stressors when talking about an entity.
Having been in your shoes, it looks like there has been an offering of further systemic treatment toward control. You could ask what "Plan B" is down the road, other treatments, are there any clinical trials you may qualify for given your circumstance that may offer better results.
We as patients need to have confidence in our medical team, and we also need to understand our situation and options to help make the right decisions for ourselves. I encourage you to do some research with your oncologist, ask the hard questions and it will empower you and give you some control in moving forward for yourself. Knowledge is power, and I wish you empowerment.
I hope this helps, your post struck a cord with me, made me upset, and wanting to help you as best I can. I hope this did help, and please reach out anytime either on the main site or in private message Kenna.
Keep safe and keep well.
thank you so much for your response! This gives me hope, my family & friends say don’t give up, I try but was really floored with that drs response to me. That dr is part of a team & I rarely get to see the “good” dr, I am hoping he will have a plan a b & c for me🤞🏻. I haven’t figured out how to private message but really really want to stay in contact with you! I feel very alone, when I was diagnosed in December all the dr kept saying is NET is so rare, one dr said she’d never even seen it...Andy you have brightened my day and shine a little light in a place that has been very dark...kenna
I will send you a friend request and that will help you send private messages. I am glad my message helped you and inspired you. We all need this as patients. I know the benefits of sharing and hearing from others in a similar situation - and wanted to pay it forward.
Before I forget, ask your oncologist if they conferred with other specialists toward seeking a more targeted therapy for your situation - especially since she indicated never seeing this before. We won't always get answers or immediate answers, but I believe it is so important to ask those tough questions because we can't always expect the specialists to go that extra mile for us. Sometimes we need to lead that charge.
And BTW- Your family and friends are so right when they encourage you to have hope and keep moving forward.
Since then, I have been on targeted drugs, immunotherapy, and chemo twice.
I have been told twice there was no where else to go, but I fought to try a past chemo that had worked, they said they don;t go backwards, but I kept fighting for them at least to try. Finally, they did. I am still here, and my quality of life is not what it used to be ,but, it's not bad. Advocate for yourself.
I am on home oxygen, but have little tanks I can take and go outside, appetite good, family brought take out last night, getting my hair cut and colored this afternoon, going blonde,lol. Why not??
I am living on Palliative Chemo, no cure, but, living. My next chemo, that they weren't going to do is April 1st. The first really helped with my breathing and getting around. I will stay on this chemo until it stops working and then I will fight for radiation. I have been lucky that it has stayed in my lung and so far has not metastisied anywhere else.
You have to start thinking of your disease as a chronic, long term disease, and learn to live with cancer. Never give up, research, these sites are wonderful as is Team Inspire that is all about lung cancer. I learned so much about my disease, side effects, how to deal with them, resources to check on. The CCS has a helpline, you can talk to anyone for information.
It is not easy, but, advocate for yourself, cannot stress that enough, I've been given up on by medical dr's twice, but, I'm still here, and planning my summer with my little grandson.
I also work with a Palliative Care Dr, don't be afraid of the word Palliative, it means comfort. She has been great psycologically, and prescribing any meds I need for my physical and mental well being.
Good luck on your journey, stay in touch, never give up, get help for any issues you have, esp side effects of treatments,.
Take care and Positive Thoughts to you always,
a lack of power, no control over these things, this cancer that has invaded every part of my life. I feel like I can’t see a future. I know I need to take it one day at a time but it all feels too heavy to carry…
Hi @Kc1972 , Kenna
We shared posts here previously and I saw this one just now. I am sorry you are having to go through more unknowns here again after so much intervention previously.
I was just talking to a friend of mine yesterday about how mentally difficult it is to go through a recurrence or new cancer after fighting so hard to get through the first one.
You aren't powerless, and you are exerting control by communicating here and with your medical team toward the direction(s) to be taken moving forward. Two steps forward and one step back is tough on us both mentally and physically.
Empty your emotional bucket as needed - we aren't meant to hold all this in, and that is why sharing here is so important. The heaviness you refer to is something I and so many here can identify with. Just do your best to weather the mental storm until the tests are completed and information come back to you.
You did get the scan done early toward earlier discovery and intervention. Like you, many of us go for preventative and surveillance scans to take what control we can through prevention and early diagnosis. I need to remind myself of this all the time, and trying to frame the situation is sometimes easier said than done. Just do your best, that is all we can do, and as you said taking it one day at a time comes with practice and perspective.
I wish you well in the coming tests and information. Let us know what you discover.
ACH2015 - Andy.
I am new here. I am making enquiries not for myself but for my younger brother who was diagnosed in June with Neuroendocrine esophageal cancer, stage 4 with metastametastasis.d where you talked if being hospitalized for assessment and to see if there are any clinical trials you might benefit from. I sincerely hope you find some.
I would like to ask you a favour. If there is a clinical trial would you let me know as I would definitely pass that information on to my brother.
he is so I'll right now I doubt he has the strength to do this for himself.
I wish you well and much success in your journey.
I saw your post and have been in clinical trials myself in the past.
There is a process to determine if you can participate in a clinical trial. You need to basically exhaust the current conventional treatments first. That is unless your oncologist deems the trial to meet and exceed the conventional treatments and be better for the patient. For example, I had a recurrence of cancer in the same area I had already had radiation and major surgeries to. The immunotherapy clinical trial was offered to reduce the risk of not healing well or properly - so I was able to do the trial. Unfortunately, it failed and I ended up with surgery - but it was worth the shot.
Human Clinical Trials are the next steps toward determining safety, efficacy and cancer types the trial drug(s) would be used in as a replacement of, or addition to, the treatment arsenal we have to fight cancer with.
https://albertacancerclinicaltrials.ca/ The link is specific to clinical trials in Alberta. Generally, you have to find a trial ongoing in the province you live in as part of the eligibility.
Open the above link and go to the Patients tab at the top right. Click on it and select the type of cancer. Two clinical trials show up under Neuroendocrine cancer. the two links below are the ones shown:
Like I said earlier, you have to meet the criteria for the trials indicated, apply with your oncologist and be accepted. So finding a trial is the first of several steps.
Also… the link below is from the CCS Website that talks about clinical trials: I suggest you discuss and show this to your brother so he can understand the process, and the risks and benefits associated. Hope this helps you and your brother, and if interested, it would be best to involve the oncologist here and advise them that this is an option your brother would like to pursue.
Hope this helps point you in the right direction and gives you and your brother some additional options.