What to do?

Lindamae

What a quandary, for them and for you.

Our cases sound remarkably similar, so to fill you in.  I had a FIT test that showed very slight inflammation markers.  My GP sent me for a CT scan (previous history of a very painful colonoscopy).  After the scan I had a phone call from the hospital asking me to come in a couple of days time.  We had a meeting with a consultant colorectal surgeon who told us the scan had shown a tumour in the rectum and a spot on the lung.  There followed MRI and PET scans which confirmed the findings of cancer and then a sigmoidoscopy where biopsies were taken, but the results showed nothing.  A second sigmoidoscopy with deeper biopsies, still nothing.  The consultant then arranged two procedures in the same week. I had very deep biopsies taken under general anaesthetic (which I think is what you are being offered) and a few days later multiple CT guided biopsies through my lower back.  The registrar who rang me after the biopsy under GA said the tumour was a hard smooth lump and was under submucosal tissue which was really unusual.  A couple of weeks later it had finally been identified as basaloid squamous call cancer.  Of course by this time since the first CT scan over 11 weeks had passed, and at the meeting prior to the final identification my husband asked why not start treating my wife with chemo right now, but we were told that cancer had to be identified first in order for me to be given the correct targeted treatment. 

The main difference between us that I can see (apart from the lung) is that I didn't have squamous cell dysphasia which is a prelude to cancer.  So it sounds as if your oncologist is pretty certain that you have a squamous cell tumour.  I have looked at my notes, and I had the identification two weeks after the CT guided biopsy, and it was almost three weeks after that that I had my first chemo (I had six months carboplatin/paclitaxol first) so his estimate of a six week delay sounds about right.

I can truly imagine how torn you are especially given his view that going the chemo/radiation route may complicate further treatment.  I think the questions I would be asking is how soon can the exploratory op be carried out, can the results be expedited so that treatment isn't delayed for the six week period he has given you, and if that is the time it takes, will the six week delay make a significant difference.

I considered a second opinion but it was only during the time when there was such difficulty in identifying the cancer.  But I believe that you can ask for a second opinion but unfortunately that too may delay things.

I am sorry if I haven't been of much help, I am thinking of you and hoping you find the right answer for you.

Irene xx

OMG. What an awful dilemma. I don't know what I'd do, honestly. I've always been a 'get a second opinion, FFS' sort of gal, but when I got my diagnosis I hustled right into treatment as my doctors advised. 

But that was so straightforward. This situation is far more complex.

Is he going to call you on Monday? It sounds like some important-to-know wisdom will be shared then. 

Under most circumstances I'd for sure want a definiitve diagnosis and damn the torpedoes, but there doesn't seem to be a clear path forward. I'm sorry to be so unhelpful. But my heart is wrung for you.

Hugs

Suz

Thanks so much Irene for telling me about what happened to you. It is really helpful.

Yes I think you're right that at least in my case the diagnosis is clear because they have the squamous cell dysphasia. It's interesting to know that your biopsies under GA were done so quickly - I was given to understand that it would take a while to organise and also that there would be recovery time afterwards.  So I will definitely question him again about the delay.

I wasn't offered the CT guided biopsies at all so it would be good to know whether there's a reason for that as well.

I did ask about grading and therefore how fast it's growing and spreading but he said that he couldn't really say because he hasn't seen the cells. If I think back to 6 weeks ago it feels like things have changed and become more difficult to manage so I really don't want to wait longer than I need to.

Thank you for all your support.

Linda x

Hi Suz

Thank you for your hug - I really need it. Yes he's going to call me. I think as Irene has said, it's not so much the diagnosis as the evidence for the diagnosis in case we need it later.

I think there are a few more questions I have to ask, and I'll feel better if everyone at the Monday morning meeting is in agreement. 

I'll let you know how it all goes.

Thanks so much

Linda x

Hello again Lindamae

I can't fault my care, I was literally at the hospital every week and generally received biopsy results within a week to 10 days, but of course these then had to be discussed at the next MDT meeting (which may have been the following week) to decide the next course of action.  What I can say - in case you decide to have these - is that in my experience the after effects of the biopsies under anaesthetic weren't that bad, like a bad period pain and a tenderness similar to that after childbirth (although these days are long gone) and some spotting but I was fine in a day.  I was absolutely dreading the thought of the biopsies through my back and was shaking so much they covered me with a warm blanket.  And all I felt was the sting of the local anaesthetic and when that worked he inserted the big biopsy needle.  He kept on asking me if I was alright and saying can I take one more, and I was fine.  And no after effects either.

There may be things I have forgotten but my husband is an inveterate note-taker so I have a pretty comprehensive record of my treatment from day one.  So please let do me know if I can help with anything else.  I remember the confusion and uncertainty only too well.

Irene xxx 

Hi lindamae ,

What a decision to have resting on your shoulders! I’m pleased though  to hear that your oncologist has been really thorough thus far & has given you all the relevant information on your case but I also understand what a quandary this has left you in.

My case was a little different as my biopsy was positive for SCC anal cancer & my staging was T1N0M0 so extremely early diagnosis thankfully, even though I definitely had cancer my tumour couldn’t be seen on either my CT scan or MRI & I wasn’t offered a PET scan. 

I’m presuming the surgery would be to biopsy the lymph nodes that have shown up on your PET scan & he wants to confirm or rule out SCC cells in the lymph nodes? 

I think to ask for a second opinion either your current consultant or your GP would need to refer you onto someone else, I wonder though if you had a second opinion, unless you went to a completely different hospital, would these findings still sit before the same MDT? In no way do I want to deter you from getting a second opinion if you feel that would benefit you but this was just a thought. 

It sounds as though your oncologist is planning on treating the lymph nodes with chemo-radiotherapy anyway but you have the choice as to whether to have the actual lesion removed surgically or mapped into  the treatment plan, is that right?

My tumour was removed surgically prior to chemoradiotherapy as it was such early stages, I can say the couple of weeks post surgery for me were pretty painful, mainly toilet related, I was using up to 4 stool softeners per day but also had to resort to glycerin suppositories as well. I was given morphine for pain relief but this caused me more problems than it solved! I had no tumour to treat as such going into my chemoradiotherapy, it was suggested I have further treatment due to a small area only having a 1mm clear margin & was described as mop up treatment that would catch any stray cells so I was therefore offered into the PLATO clinical trial where I was given 23 days of treatment opposed to 28 & a slightly lower dose of radiation. 

Hopefully following the findings of the MDT meeting today you’ll feel a little better with more conclusive information & be able to make your decision. I think you were wise signing the consent forms etc., as if you decide to go ahead with the full treatment plan then there’ll be no delay & you’ll be able to get started straight away. 

Sorry I couldn’t have been more helpful, please let us know how you get on. 

Nicola

Thanks everyone for your replies - it is all really helpful.

The oncologist rang me after the meeting and the consensus was that it is important to have the biopsies taken under GA. So I can see the surgeon on Friday and hopefully have the operation next week. He will really push everyone to make this as quick as possible and is now saying 3 weeks delay rather than 6. He made the point that lack of biopsies not only could exclude me from further treatment but would also mean I couldn't be part of any relevant clinical trial (these are only considerations the initial treatment is not successful and he has no reason to think that it wouldn't be successful).

 Nikki65  that's a good point - does he want biopsies from the tumour or from the lymph glands - I am not sure.  I don't think I am being offered surgery for the tumour - I think he is already clear that it is cancer and that surgery would be insufficient. 

Irene75359  thank you for your useful points - I asked about the potential for CT guided biopsies and he said that they didn't feel that they would get samples from the right place. And I also asked about consequences of postponing treatment and he said he doesn't think the delay will make a difference and he has had experience of patients who have had other unrelated medical issues having to wait longer and going on to have successful treatment.  He also said he doesn't believe this is an aggressive cancer because given the size of the tumour (5cm) there would have been cancer cells showing already in the existing biopsies if it was.

So I have agreed to have the GA and I need to clarify with him about the timescales. He said 17 days from signing of consent to start of treatment and I'm not clear now whether the 17 days restart once the histology is in or if they're included in the 3 weeks. 

I can cope for a while, focussing on understanding the details and marshalling the facts but then there's a point where the accumulation is too much. 

Thank you all for being here

Linda x

Lindamae, I don't think you could have had a better outcome.  He sounds as if he is really listening to everything you are saying and giving you very carefully considered replies.

Your head must be spinning but everything is happening now and I will be thinking of you in the next few weeks.  And if you need more support, we are always here.

Irene xx

Hi lindamae ,

I totally agree with Irene I think your team sound as though they’ve carefully considered every option & are leaving nothing to guesswork. These biopsies under GA will give both you & your team total clarity on your complete diagnosis & regarding the best course of treatment moving forward for you. 

We totally understand how overwhelming all of this can be, just know we’re here to support you however we can.

Nicola 

Finally I have a date for the biopsies under general anaesthetic. It's not till the 22nd  - which is disappointing but I have tried every way I can to move it earlier and there doesn't seem to be a possibility. I can't help but keep imagining that the tumour is growing and spreading further with every day that passes. 

I know that anxiety isn't my friend so I'm doing my best to keep my mind on other things. Now that the pre-op assessment has all been done, we're going away for a few days to the sea which will be lovely.

Linda x