New here...
Mom, 77F had partial glossectomy 28 days ago for tongue SCC stage 1, doc was gonna remove 10% no lymphs, but needed to get 20% out with stitching, then game time decision to get some lymphs on left side out.

Doc said he got it all due to microscopic testing during the surgery, but 3 weeks later at follow up, he said lymph nodes were negative but there was a 3mm area positive microscopic cells using dye near margin. Seems small to me but I know nothing.

My Mom is doing well recovering, but the swelling and not eating much has really wiped her out. So when doc said he would take out another 20% with a forearm flap, trach, nose tube, possibly cut other side of neck for flap artery, 7 days hospital, 3 wks no eating...she just about fainted.

She said there is no way she could make it thru this type of invasion. I believe her bc she isn't the same right now mentally for last week. Very sad and depressed. Absolutely the opposite mentality that you would want to fight the battle.


She was much more open to radiation or proton, but she does not know how hard that could be yet. Going to MD Anderson in 10days for 2nd opinion and see where that leads.

Are there people that are stage 1 that simply refuse the bigger type surgery and do other things, or wait a year to revisit things. Initially I was told Scc is slow spreading, but doc didn't seem thrilled about pushing it off even 3 months.

Thanks

Hello CausewayManatee,

Sorry to hear about your Mom's ongoing challenges with the surgery and possible need for more invasive surgery.

I am very glad you are able to get a second opinion at MD Anderson!

I think after you speak with them you two will be very well advised on what the best options are in your mother's situation.

MD Anderson is the best from what I hear, like bar none, absolute best, and my CCC is world renown, but MD Anderson is the pinnacle as I understand it.

If my cancer ever turned out to be something especially challenging, that was part of my game plan to seek a second opinion there.

I am pretty sure there are quite a few people on here who have made those types of decisions.

If I was in your shoes I'd be asking a couple types of question.

1.) Is there a very high confidence that surgery alone would be curative at this point?
2.) With your mothers age, and the high degree of trauma and side effects for the more invasive hemiglossectomy with forearm flap, would other treatments provide a similar chance of cure with less recovery complications?
3.) What might progression "look like" if surgery is declined? (not to use scare tactics, but for informed consent, you want to know what things may be on the table. It may be easier to deal with anxiety and such with medications and "zombie" her way through recovery on something the surgeons think they have a very good reason to think they can nip this the rest of the way in the bud in than to forgo treatment and end up in a possible worse suffering. (although Palliative care for patients who chose to stop fighting for a cure as the cure just is not an option any more, palliative care has gotten a lot better--terminal patients can be made relatively comfortable in their last days, as was the case for my father. His palliative care doctor was a former oncologist who transitioned into caring for patients who had terminal illnesses. But again your mother is stage 1?)


If it was a more advanced stage then the quality of life impacts of surgery vs. chances of recurrences would make it easier to decide against doing a surgery.

Sometimes then the conversation or decision calculus (like with my Dad and his terminal cancer treatment decisions years ago that we went through) is like how do I live my best remaining days now, with the treatment plan being to give the best number of high quality of life days, vs. fighting a losing battle that adds misery. HOWEVER, your mother is still stage 1, and that is a different set of facts to deal with.

I am sorry you mom is so sad and depressed about all of this. I would ask about what can be done to help with this so she is in a better place to decide to fight.

Hopefully you are communicating all of that to your medical team, and I hope you are at a Comprehensive Cancer Center. They should have some other resources to point you to when dealing with those issues of mental health and dealing with your disease and treatment, and concern about recovery, the future, recurrence etc.

I hope after being seen at MD Anderson, your Mother's outlook improves, and she is encouraged that Hope is not lost, and despite the challenges they have some good options for her.

I've read on here that people with recurrences that have had radiation therapy, that it makes future surgeries for recurrences more challenging, radiation damage and scar tissue make difficult salvage surgery, but that there are surgeons who are better at dealing with that.

So gather that if they can do a 100% surgical treatment initially that is preferred front line initial treatment, as there are less side effects, at least when the surgery is relatively minor.

It is a tough situation for both you and your mother, but I think communicating all those concerns with your current medical team and also at MD Anderson, hopefully, will give your mother some clarity and wisdom on how to best proceed.

I know those quality of life questions come up every time I go in for a follow up, maybe it's just wishful thinking on my part, but my sense is that if I indicated I was depressed and having difficulty with my treatment options and plans my doctors would address those issues and refer me out as needed.

It's a tough personal decision for her.

OSCC can be fast or slow spreading, depends on the person and sub-type, location etc...

You and your mom are in my thoughts and prayers as you face this challenge.

I hope you find a good support network to help you along this way.

R/
CQ