Newly Diagnosed

ggodfrey50

My son who is 38 was recently diagnosed with colorectal cancer. He is wanting to move fast with treatments. But the doctors seem to be slow in getting started. Had a colonoscopy and found a 6 mm tumor. It was biopsied and he was told by surgeon they would not operated until he tried to shrink the tumor. Is this normal to leave the cancer in you? His oncologist took two weeks to call and set up an appt. and then said it would be three weeks before he could see him. Is this normal? It doesn't seem right to leave the tumor and to wait 5 weeks before we even discuss treatments. We are not happy that no seems to be in a hurry to do anything. Any suggestions......and is this normal

SnapDragon2

2nd and 3rd consults. Compare and weigh treatment options before any treatment commitment.

Research here and colontalk for more info on expanded bloodwork panels for info that might be very important right now or later.

Trubrit

Welcome to the forum.

I am so sorry to hear about your son. I know it would break my heart if one of my boys were diagnosed, so my heart goes out to you, as well.

I was also shocked at how 'laid back' my Oncologist seemed about everything. I had what in essence was a completely blocked colon, with one very large tumour, yet, they scheduled my surgery two weeks out; just had me on laxatives to keep things running past the blockage.

So, yes, it does seem like things should move faster. They will tell you that a tumour is normally slow growing, and a few weeks won't matter, but I think what matters most, is what is going on in your head.

Your son could always try to get an earlier appointment, or even look elsewhere for a new Oncologist, but he may find himself back in the same position, of waiting.

I don't think that there is a good answer, right now.

Shrinking the tumour is a normal procedure for those who don't have a blockage. Many of the members have been that route, I was not one of them.

It is always good to be proactive in any treatment; proactive but not pushy. Fine line, I think.

I wish your son the very best, and for you and those who love him, your support through his upcoming journey cannot be underestimated.

Be sure to visit us and we can help along the way.

Tru

chemo22

https://csn.cancer.org/discussion/325875/newly-diagnosed

Hi new to grp n CA but i am a HC worker w phd in research so i read a lot! From what I've seen the avg days from dx to initial tx is 90 days... Sounds horrible right? Our surgeon says it grows slowly even told us to tk a vacay 1st... We didn't but were luck to start tx in 30 days. Now as gar as surgery goes it all dep on ur specific sit. But the theorybehind waiting on sx n dping chemo to shrink is that if they jump to sx 1st is that microscopic CA cells could then float into other areas n begin growing n metastasize. Plus usually have to wait. Minimum 4 to 6 wks after sx to recover before chemo. Remember a healthy body is really hit hard by chemo you don't want to start already weak. In the end ur plan of attk shld be agreed btwn u n Dr. Also if ur not comfortable w Dr. Look elsewhere.. Ur going to have a longterm relationship w them. Goodluck hope it helps

SandiaBuddy

A common saying on this board is "you have to be your own advocate." Disregarding the risks and/or rewards of seeking a different doctor, consider making friends with the scheduling person and making it clear your son can fill-in a cancellation in an hour's notice. See if the doctor can fit him in for a special early morning or late afternoon appointment. Keep at it. Call or visit frequently.

Personally, I dropped my first doctor and selected a more qualified one, to my benefit. I also used every strategy possible (including having my primary care physician call the cancer doctor--which got my appointment moved up by weeks [the eventual treating doctor laughed and said my primary said, "I think we can do better than that (about the appointment speed] and the cancer doctor did--she created a special 8am appointment to see me.]) I advocated for myself as if my life depended on it--because it did.

chemo22

Agreed we took a 8AM appt w more than an hr drive to get there. We've also asked about zoom calls.

Forbin

https://csn.cancer.org/discussion/325875/newly-diagnosed

Yes its normal- in my case there was a tumor board that discusses the results of a ct scan and MRI( which if your son hasnt done those yet that will be next) and then decided treatment course. In my case it was radiation and chemo to shrink the tumor first and prevent spread as it appeared to already be in lymph nodes. After 6 cycles of capox the cancer was basically gone and just a scar where the tumor was. I still had surgery to remove the tumor and several lymph nodes and it came back NED. Your son is embarking on a rough journey- the next 4-6 months will be rough but he’s young and will manage it well I’m sure. Oxaliplatin is the destroying angel. Horrible drug but delivers results

airborne72

My rectal tumor was discovered during a colonoscopy (I requested the procedure) in mid May. It was almost mid July before I began taking oral chemo (Xeloda) and daily radiation treatments to shrink the tumor. They worked and eradicated the tumor but I still had the resection surgery in early October followed by several sessions of infusion chemo therapy beginning in mid November. I have been NED ever since.

The process is daunting both physically and mentally. Youth and a supportive family will provide much needed strength and stamina. I wish all of you luck.

Jim

agekrelve

It's very common to get all the tests and data before deciding on a treatment plan with Surgeon, Oncologist, Radiologist etc. but totally understand the concern on waiting. From experience and all I have read, a 6 mm tumor is relatively small in size and generally cancers of the colon and rectum grow slow regardless it is still cancer in your body. Once the stage is determined ( how deep in the wall (T1-T4) the cancer has penetrated and how many if any lymph nodes are thought to be affected) by MRI and/or CT scan and if metastasis has occurred the treatment will be decided. For some early cancers (stage 1 and 2) that have not spread the US still follows surgery as first line of treatment where the EU has the protocol of chemoradiation or chemotherapy to try first no matter what stage is determined now. I like that approach by the EU and as chemotherapy drugs evolve and are less toxic along with radiation dosing studies to become most optimal but still effective we may see surgeries decrease in coming years. I had a 2.5 cm (25 mm) tumor found in my rectum and one lymph node was around 5 mm (right on the edge of being suspicious). My treatment plan was Total Neoadjuvant therapy (TNT) which was Folfox8 (5-fluorouracil, Oxiloplatin, and Leucovorin) for 4 months and then Chemoradiation for 28 days which I took Xeloda on days of radiation. I finished Aug. 1st this year and in Sept. it was found I achieved a complete clinical response. I have chosen to do watch and wait now under a rigorous protocol being monitored closely and deferred surgery. I based my decision on how biologically my initial tumor responded to chemotherapy (FOLFLOX8) as it shrunk the tumor by 80% before I even started the Chemoradiation which is usually the more effective treatment in shrinking the tumor and reducing local and/or local regional reoccurrence. So in my opinion with a 6 mm tumor, I would first see how it responds to chemotherapy as it if shrinks with that alone it likely isn't an aggressive tumor and you may have options to avoid a radical surgery if you achieve a clinical complete response. It's not for everyone and some just like the peace of mind of removing any potential cancer with surgery. However, just saying that it could be an option depending on response which you would never know if they tell you just have the surgery. The Post morbidities of surgery are different depending on where the tumor is located in the colon or rectum as well so that is another big factor in deciding. It is much easier to remove sections of your colon than your rectum (especially if it is lower in the rectum). My two cents. Best of luck and we will all be praying for your son.

jenmo

https://csn.cancer.org/discussion/comment/1701696#Comment_1701696

It came back “NED”? Just following along as my situation sounds similar thank you. Came back negative?

ForMyGirls2

https://csn.cancer.org/discussion/325875/newly-diagnosed

Hello and welcome to the board. Sorry to hear about your son. I was diagnosed March of 2021 at 43 yrs old. with a 5 cm. Low rectal tumor. MRI showed 1 possible lymph node affected. I did 5 day radiation about 30-40 days after diagnosis and then began chemo therapy of 5FU plus oxiliplatin, also know as FOLFOX. I received 9 rounds over a 20 week span, then took 6-8 weeks off and had an APR surgery with a permanent colostomy. The tumor had shrank but still had a small portion remaining. Because of my young age I was willing to do whatever I needed to get rid of cancer. Today I am over a year out of surgery and doing well. Life is pretty much back to normal and so far through 3 scans and a colonoscopy I am NED. Your son has age on his side, and hopefully will rebound once this is all over. He just needs to think of this as a stent in time he’s got to get through to get back to living life. Good luck with everything and by all means reach out if you have any more questions.

JohnBravo

Very typical, some steps move faster than others. Some drs are faster than others. A small tumor that isn’t causing a blockage or anemia from loss of blood, is not going to to do anything in a few weeks or a couple months. These things grow very slow. But if you are not comfortable with the dr Or treatment, you have the right to see a different dr or goto a different hospital. You can be your own best advocate!