Hello All. I’ve been on this site forever, throughout all the trials and tribulations for the past 8 yrs of my mother’s health through Afib and congestive heart failure. I may have mentioned that my mother also has invasive squamous cell carcinoma. My mother is on Hospice care now for a month - but only for end stage CHF. While it is the end stage, she is still doing okay thanks to the comfort care of hospice and their wonderful people. Since my mother is no longer treating with doctors, the squamous cell cancers on her body have been going wild! It’s almost as if she is being eaten alive. Before hospice, we were at the dermatologist office for removals of these cancerous cells every month or so. It became very involved with my mother having to spend the day in surgery while they dig into the cancerous areas to make sure they got all the cancer cells from the area. And then biopsied. Even from her eyelids!

I was so relieved when she was accepted into hospice because it meant a break for me from going to constant doctor appts for her heart and also hoping that they could keep her comfortable with the skin cancers. But because she is not on Hospice for her skin cancer, even though it may be affecting her general health, hospice won’t really do anything about the growing tumors on her body. This is starting to affect my own sense of worry because they need attention. But I’m not sure I can 1) get her out of the house due to stairs and her loss of some mobility and 2) see her spending the day at the surgeon having multiple tumors tended to, having them cut out and then them digging around each area to have the surrounding areas biopsied. Then stitches etc. Then the wound care afterward.

I’m not sure if anyone has had these challenges. I try to take this day by day, but I don’t know what to think about just leaving these growing tumors for whatever time she has left. I can’t really make that call as to how much time, but I think she will be here for a while. She is uncomfortable and I’m even thinking she is developing a “smell” about her from these tumors. I just don’t know what to do. Whether to subject her to all-day surgeries again or to just let things be and accept this is part of her journey now.

I will take this up with hospice on Monday. But just wondering if anyone had to deal with this sort of dual- diagnosis towards the end and what should be done - if anything. While CHF is life-ending in the last stage, I don’t know just how invasive her skin cancer is. She was never tested for metastases. Hope I didn’t make this too confusing. Too much thinking going on.

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Update: The hospice nurse was to see my mother yesterday. She was not the usual RN that comes in. She saw the “monster” tumor on my mother’s face and told her that they would try to get her out to see a dermatologist to have the tumor dealt with in some manner.

I am dealing with the return on my non-Hodgkins Lymphoma now and I will be doing chemo starting the end of June. I told this to hospice, so I’m happy to see they are taking care of this situation. There is no way I can get her out of the house, into a car, and spending a lot of time having this taken care of. My mother really likes her hospice team and I am so happy for this. She doesn’t know I have cancer, but rather thinks I am anemic and going for iron infusions. (I am very anemic due to the blood cancer).

Have a a blessed day everyone!
Helpful Answer (2)
Reply to nymima
cwillie Jun 12, 2019
((Hugs)) to you nymima.
I would say if they are not causing pain leave them alone.
You are right in that tending to wounds and stitches can be a problem.
I would however discuss with the Nurse about implications if these become larger open wounds what they would suggest. One of the problems towards end of life is skin breakdown and this may make matters worse.
Is it possible to "Freeze" some of the areas without doing biopsies? Or remove areas in the office without going into "surgery" A local anesthetic would be easier than a general if that is what she has had in the past.
The Hospice should have a Wound Nurse that you could also talk to to get their opinion on what you should do for your Mom.
Helpful Answer (1)
Reply to Grandma1954

Honestly, it's much too simple to say no treatment of anything once someone enters hospice but quality of life has to be considered too, it doesn't have to be all or nothing. There are many on this forum who have removed a loved one from hospice to take care of a problem that they felt needed treatment and then reapplied for hospice when the treatment was finished.

During my mom's time in the nursing home there was a man there who had a small cancer on his ear, over the weeks I watched it completely take over not just the ear but creep half way down to his chin. Finally the poor man was taken for treatment and most of the ear was removed (the rest eventually healed) - I can't help but think he could have had a simple intervention weeks earlier that would have likely saved the ear, relieved his suffering (he did complain that it hurt!) and cost the healthcare system less too.
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Reply to cwillie

I wonder if it would be worth putting in a call to your mother's dermatologist and asking if he has any suggestions.

I completely agree about not subjecting her to further biopsies. The cancer's there, what further useful information can a biopsy offer?

But if one particular growth is causing her clear discomfort, there may be something to be said for removing it, purely as a palliative measure. It can't hurt to ask, and there may be a way of treating it that hasn't been thought of yet.
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Reply to Countrymouse

Spoke to hospice. They cannot do anything more other than to give her the cream with the litacane. And tell her not to sleep on that side of her head. I call the growth “the monster” because that’s what it is and it grows everyday. My mother spent too many day’s in the sun with no sun screen ever. She and my dad lived in Florida for 31 yrs and they played golf everyday in that sun! This is what happens. This is a difficult thing to watch.
Helpful Answer (1)
Reply to nymima

Ask Hospice for pain control/relief measures for the skin cancer. I would not subject her to all day surgeries (and why do a biopsy of surrounding skin - at this stage what is the point?). My Uncle has to have this done every 60-90 days or so and the time it takes for the wounds to heal gets longer and longer each time. There is also a risk for infection. Even if she was on Hospice for the skin cancer, I do not think they would do anything different from what they are currently doing regarding the cancer - so ask about comfort measures for the skin cancer.
Helpful Answer (4)
Reply to plum9195
nymima Jun 10, 2019
TY for your reply. I have a call into hospice now with my concerns. I agree she couldn’t take the grueling day of what she would have to endure if she was to have this and other growths removed. She has bandaids on all over her body because the tumors are sprouting and rubbing on her clothes and she is most uncomfortable. For me, this is worse than the reason she is on hospice - which is for end stage Chf.
I thought someone would have replied by now. My reply should bump u up.

Usually when on Hospice no extreme measures are taken. Seems like no matter what, these tumors are a constant problem. Maybe they can give her something for the discomfort. The patient is suppose to be kept pain free.

So sorry she has to go thru this.
Helpful Answer (3)
Reply to JoAnn29

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