3 recurrence

Hi,

Your moms situation is unique in some ways but if it makes you feel any better I have had mets of my initial anal cancer 2 times now as well. (Along with breast cancer sandwiched in between)

My initial dx over eight years ago was stage 3b and already involved a pelvic lymph node. I was treated with protocol Rx of chemo/radiation as well as what was to be a temporary colostomy. (After severe radiation damage the ostomy remains as permanent but for me easily managed) Then after four years a large mass on my lung was found on a follow-up scan and I was treated with a lobectomy and a more aggressive course of chemo. (Both times my chemo included Cisplatin) Late last summer another small growth was found on my hilum (lung area) and I was treated with radiation. Both mets were of anal cancer origin and tested positive for HPV.

Fortunately...I feel great today, check back tomorrow I suppose it could always be a different story! While I am stage 4, I try to keep mindful of the fact that that doesn't necessarily mean doom and gloom as it did 20 years ago and new therapies and treatments are becoming available every day. I seem to remember a couple months ago you mentioning that your mom may have pelvic exenteration...is that still a part of her treatment plan? Have her tumors been tested for HPV?

I've heard great reports about Dana Farber so would like to think you are in good hands there. I think sometimes when doctors come across as being vague its not because they are not qualified or keeping things from patients, but rather they believe we (non-doctors) will not understand and so to say too much will just cause more worry and confusion. Can you ask for a patient advocate to intervene and get you a better explanation? It is your right (and your moms) to feel completely informed of her situation no matter what.

I will have you both in my thoughts and prayers as you move forward. Please keep us posted as to how things are going.

katheryn

swood9008 said:

Thank you so much for all

Thank you so much for all your kind words, you really are a amazing in all you have overcome! The surgery isn’t off the table but thry are not overly thrilled with doing it since its high risk, and invasive and until they know it would be a curative surgery. Hoping yo know more after the scans July 25 which she will have 3 rounds of chemo, they’ve been rough about a week and half recoup then a week and half until the next. I mentioned the patient advocate to her which sounds like a good idea! Thank you again, positive vibes and thoughts for many good days ahead! 

You are very welcome. That type of surgery is pretty major and I'm sure a good deal of healing time involved so am glad to hear that maybe it can be avoided. I remember my chemo for the first lung mets being a similar schedule (the little over a week of feeling rough, then about the same time to get back to okay just in time to do it all again) Its a rollercoaster ride we never bought a ticket for but somehow manage to hang on because we have no choice. Your mom is lucky to have you to ride along with her!

I'll hope the weekend is restful for you both...

katheryn

swood9008 said:

Just an update, my mom has

Just an update, my mom has done 3 rounds of chemo, 5fu and costplatin. She had scans yesterday and her penut size vagina tumor has shrunk and lymph node nodule is gone! Although the tumor is still present we were told it would be regardless I am thankful for the results! Next discusssion is with surgeon and for her to go through the gastric sleeve surgery to better prepare for tumor removal surgery!  

Day by day, today I am thankful. It’s my 29th birthday and it’s the best gift I could have received! 

 

 

 

 

 

 

Thanks so much for the update!  That is very good news!  Please keep us posted.  Prayers for your mom and you!