Reoccurrence after Both chemo radiotherapy and APER SURGERY

Hello Jinnie,

I don't really have any relevant experience to help you, but I am really sad to hear you are having such a tough time right now.

I hope your chemo is going ok and manages to control things for you and make your condition manageable. Please keep us updates about how you are, and I hope someone else here can help with your query about second opinions.

Best wishes,

Hi,

In 2021 i had first six cycles of carboplatin and taxol to shrink (not so big) primary and to control abdominal lymph nodes. Then i had standard chemoradiation, that removed the primary tumor and i was NED for 1+ year. However, the primary at anorectum then relapsed, and doctors recommended either APR, or another systemic chemotherapy.

I refused both recommendations, as APR would not guarantee there will be no systemic relapse, while systemic chemo was of limited help during first line treatment, while significantly downed bone marrow functioning, yielding low white blood. So, another systemic chemo would kill my body resources promptly.

At the same time i (finally! should have it 4 years earlier, at a time of the diagnosis in fall 2020) had hpv pcr (privately, as it is not possible to do hpv pcr for a man at hmo) from anorectum, that found 5 hpv types, including 2 high risk.

So, based on my medical literature reading i suggested to my doctors i have topical immunotherapy, that they agree with. It was in july 2023.

It is based on an idea to control hpv infection, by boosting local (!!! not systemic) immune response to reprogram it, so, body immune system, specifically local immunity, does the job of eliminating the HPV-infected tumor cells.

It is now about 9 months as imaging tests (mri and pet) report there is no primary.

Hope this information helps. Good luck and keep us updated.

Sincerely,

Alex (israel)

Jinnie

I am just taken aback (and horrified) with what has happened to you in spite of all the treatment you have had.  I truly haven't heard of another case of such early-staged anal cancer developing and so fast too, and I am so sorry that you are going through this.

I am presuming that you are having Paclitaxol/Carboplatin which has been shown in trials to be more effective than any other combination at treating advanced anal cancer.  What this chemo sometimes does is shrink the cancer and open avenues to other treatment.

In your shoes I would certainly be getting a second opinion and I think it important that it is from a specialised cancer centre and that you see someone who is highly experienced in GI cancer.  I don't know where you live, but the hospitals that have a good reputation are Newcastle Hospital, the Christie Hospital in Liverpool and the Royal Marsden in London (obviously I don't know them all).  The oncologist who treated me is an expert in the field and I didn't feel the necessity to go for a second opinion when I discovered this but I certainly would have done otherwise.

Please let us know how you get on, Jinnie, I am thinking of you.

Irene xx

Hi Irene 

Thank you for your reply. Yes I'm on that chemo. My next scan is on last day of 4th cycle. 

Im doing ok on chemo and have couple days away on each week off to recharge. Ive still got my hair atm, although its very thin.

I live in South Wales and attend Velindre Cancer centre.  My oncologist and Surgeon are both surprised by the way my cancer has come back. They said its very rare that this has happened. I've had another Surgeon opinion who was in on my surgery and he said the same and he didn't know a Surgeon who would operate to remove lymph nodes as too dangerous. The growth is very hard lump with a fluid sac which fluctuates in size. I now have Start of Lympodema down my leg.

I'm thinking of another opinion from Great Marsden but don't believe I can get this via NHS so Privately to super Surgeons may be only way. 

Jinnie, I had a quick look online and the Christie have an online patient advice leaflet on groin lymph node removal.  But I am a lay person and I would think any surgeon is going to take previous treatment and procedures into account and you really need an expert's opinion.  I am treated by the Royal Marsden in Sutton and I can't fault the treatment I have there.  It would be worth giving them a ring to ask, I don't know the protocol for second opinions on the NHS outside of your home area.

If they can't help, the link for a second opinion privately is https://www.royalmarsden.nhs.uk/private-care/second-opinion

I do hope you make progress in getting something positive sorted out.

Irene xx

Hi Jinnie ,

I’m so sorry you’re facing this again! Can I ask was your original diagnosis squamous cell carcinoma? If so it’s so incredibly unlucky & unusual for a stage 1 diagnosis to go on to recur not once but twice. I think in your position I would be  getting as many opinions as possible just so you can say you’ve explored every avenue. 

Please let us know how you get on, I’m sorry I couldn’t be of more help but we’re here for you whenever you need us. 

Nicola 

Hi 

Yes squamous cell carcinoma barely stage 1 they could hardly see on mri. 

The oncologist told me this is very rare for this to happen. They are surprised/shocked. I'm having a scan on 23rd so once I've had results I'm doing self referral to super surgeons at Great Marsden. 

If I'm that rare they may be interested in my case. 

Jinnie x

Hi Jinnie,

Like you I couldn’t believe how I got into this, a very curable cancer but all treatments so far have failed for me. I had  reoccurrences after radiochemo, APR surgery, and DCFm chemo. Now I’m starting Carboplatin/paclitaxel. I’m not familiar with this forum but I guess you can find my post to have more details. Our cases are very similar, and rare indeed, I don’t think my oncologist has had another patient like me, he seems as shocked and discouraged as I am after each PET scan…Anyway, I don’t know if it’s simply bad luck or something missing in our immune system, or both…

just to let you know you’re not alone, and I’ll keep my fingers crossed for us (whatever the doctors say, I think that at one point, they just don’t know anymore)

xx

Jinnie, 

That's a shocking outcome and I'm so, so freakin' sorry. This is just awful and I don't even know what to say.

I'd absolutely get a second and maybe a third opinion if you can. 

Holding you in my heart.

Suz

Hi I had a second opinionated the Christie manchester I rang them and they told me to se d all scans etc which my oncologists secretary did this was all through NHS so start with a phone call and take it from there it took about 2 weeks and I had anappointment so good luck and keep us informed.ed