Rectal Cancer - the waiting game

[Narey]

Hi all, 

I am a 33 yo female, diagnosed with rectal cancer (stage 2 - T3a) amid Covid lockdown in Melbourne. Deciding to find out what food intolerances were causing my mild symptoms while in covid lockdown 1.0 may have saved my life.

It was found about 6-8 weeks ago, is large and close to the sphincter. The surgeon seems to want to leave me with very little hope for saving the sphincter and stoma reversal (it is 6cm from the end), he also says I need chemoradiation before hand - without question.

Since then I have seen a team of radial oncologists who are questioning the grade and the need for radiation... So after another biopsy and a referral to IVF (I am single with no kids) I still have no idea if I will have a perminant bag, if ill need to endure radiation and all it's side effects and if I'll even be able to carry a pregnancy following radiation. Every specialist seems to have a different opinion (not just the surgeon v oncologist, but also the oncologist said my uterus wont be able to withstand pregnancy post-radiation, the IVF gyno disagreed). The final decision about immediate treatment will be made next week.

I am just so extremely overwhelmed not just about what I will endure over the next 6 months... But the impact on the rest of my life... Also who do I trust?

My friends have been as supportive as possible in stage 4 lockdown, but it would be great if I could find some people who have been through a similar experience.

Looking forward to hearing from you. 

X

Nic

[sch]

Ni Nic,

Welcome aboard the roller-coaster!

I'm sorry to hear about your cancer.

If you have the surgeon and the oncologist giving you conflicting information, I would be tempted to ask them why you are receiving the conflicting information?

Maybe also discuss with your GP to see what he thinks and whether you might benefit from a second opinion? Although GPs aren't specialists, they are still an extremely useful resource when you have cancer.

Please keep us posted.

-s

[Narey]

Thanks so much S,

To cut a long story short I have got stuck between 2 different colorectal oncology teams at 2 different public health services. 1 team is interpreting the biopsies and scans one way and the other another way. Basically I think I am floating between a T1/2 and T3.

One team thinks no radiation/chemo just either ULAR or TAMIS local excision to review if I need a ULAR. Another team is thinking 6 weeks chemoradiation followed by ULAR. 

I took your advice and spoke to my GP, I asked her to refer me to the surgeons who are a part of the same health service as the oncologists I have been liaising with. So, I am hoping sticking with one team will help with creating consensus. 

I am having a higher resolution MRI next week to also hopefully help create a clearer idea of if the tumour has invaded the muscularis layer or not. Sounds like all the very senior clinicians are involved (including radiologists and pathologists) at both health services. I think my problem is too many minds... too many opinions.

let the saga and the waiting game continue.

Cheers,

Nic

By the way, what is your story? Are you going through treatment now? What has been your experience?

[sch]

Hi Nic,

I guess I was lucky in that respect. I never chose an oncologist. My surgeon selected one for me that he had a good working relationship with.  If I had to use the services of an oncologist again, I would choose her again. I was very lucky. She was amazing. 

I was diagnosed with stage 2 bowel cancer in late 2017 after a colonoscopy (lynch syndrome). Surgery and 12 rounds of chemo for treatment. 

Because of my relatively young age (40 when diagnosed), I've taken a number of measures as a precaution (tumour removal, bowel resection, chemo & lots of annual scans).

So now I'm cancer free it's just scans, scans & more scans. Really, I don't have much to complain about and appreciate where I am now.

-s

[sch]

Hi Nic,

Just wanted to check and see how it all went.

Did you get results back?

-s

[Heidsta]

Hello Nic,

How are you traveling?

I've just read your thread & I'm sorry to hear of all your conflicting info.

It's such a tough journey & so much is unknown, but I guess your teams are just trying to figure out what's the best for you in the long term. I certainly hope you've been able to make some good progress for a clear treatment process. I can only imagine how difficult it was to endure all this through the VIC lockdowns too.

Just on a year ago I completed 6wks of chemo/radio in northern NSW for Anal Squamous Cell Carcinoma - T4. Unlike yourself mine was just inside the 'back end', with another internal lemon sized mass pushing on the vaginal wall & colon. Thank God my scan last April was clear as well as my biopsies in June & now I'm on the merry-go-round of checkups. 

Well I really hope you're doing OK. Please don't hesitate to message any time.

Love & hugs,

Heids

💗

[Narey]

Hi S, 

Sorry for the delayed response. 

The high resolution MRI report stated it was a stage 2 T3b... But the surgeons and oncologist still believed it was likely just a large polyp, so the plan was ULAR without chemorad. I had surgery back in September. I was left with a temporary iliostomy and an inactive bladder (cue self catheterising as well as stoma management). The pathology on the polyp identified a stage 1 T1 cancer with large margins... So not the 3b that the MRI report stated - such a relief. So, in the end no chemoradiation needed and I had my iliostomy reversed last week. Still in the recovery phase and basically living on the toilet, but it feels great to have the majority of treatment behind me. Now just regular scans/tests to make sure nothing comes back and bladder investigations.

Hope you are keeping well. 

Nic

[Narey]

Hi Heids, 

Congratulations on a year post treatment. Did you have any surgery, or just chemorad? Mine was quite close to the "back end" in the end. Chemorad was a big deal for me as I do not have a family yet and infertility was basically guaranteed if I went down that root. I also read alot about how radiation can cause worse chronic ULAR symptoms. I ended up just having ULAR surgery with a coloanal anastomosis. My temporary iliostomy was reversed last week. I am glad I didn't go with chemoradiation as it turns out the large polyp had "only" a low grade T1 cancer in it and the surgery obtained large margins so no further cancer treatment at this stage. Still a bit of recovery to go, as I am pretty much glued to the toilet atm, but I am told that is normal and should improve over the coming weeks/months.

I hope you keep well. 

X Nic