Info please - cancer treatment side effects/MediCal

Miscellaneous and Personal Stuff I Must Share
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(Mods - this may be more suitable for IMHO or GQ - feel free to move of course.)

My mom was just diagnosed with cervical cancer. She’s lucky, they caught it when it was still stage 1B. It doesn’t seem to have spread to either her bladder or lymph nodes, which is a Very Good Thing.

She’s beginning treatment tomorrow. As I understand it, she’s going to be treated mostly with radiation, with chemo as a backup. Radiation doses will be 5 days/week, chemo once/week - this lasts 3 weeks, then a week off, then she’ll go into the hospital for 2 days while they do a focused radiation dose right into the tumor, then 2 more weeks off, then another two days of focused radiation, then hopefully that’s the end of it.

Nobody in our family has had cancer in the immediate generations, so I have zero experience of what this might be like for her and for the rest of us (my stepfather, nineteen-year-old-brother, my husband and I.)

The good news is, they’re estimating a 70-80% chance that this course of treatment will be successful. So that’s very good. She’s also being treated at the University of California, Irvine at the Chou cancer center, which I understand is top-notch.

My questions are as follows:

  1. Most of the stuff I’ve read about the side effects of cancer treatment is about the effects of the chemo. She’ll be getting a fairly low dose of chemo, but a lot of radiation. Will she still have the standard side-effects (loss of appetite, loss of hair, lethargy) or will they be somewhat different?

  2. How bad is this going to be? Of course every patient will be different - but I really don’t know what to anticipate at all. How much care will she need during treatment? Will she probably be strong enough to basically take care of herself, or will I need to assist her with things like bathing, toilet care, feeding, etc?

  3. Money. My parents are self-employed and, as such, are uninsured. (Yes, I’ve nagged them about this repeatedly before this all came up. No, I haven’t mentioned it to them since - there are times to say I Told You So and there are times to STFU and this is the latter.) Apparently Medi-Cal will help them cover the expenses somewhat, but Mom will first have to liquidate and spend her 401k, and there’s a good chance they’ll also have to sell their property. UCI has some clinical trials going on, which would have covered a lot of the costs of treatment, but Mom didn’t qualify for the one that’s going on now and the one she would have qualified for doesn’t start up for a while yet, and the doctor wanted her to start treatment immediately. She doesn’t yet qualify for MediCare (she’s only 56). I would really, really like to have her be able to get through this without her and my stepdad losing their retirement savings and property and having to declare bankrupcy. Anyone know how this can be done? Mom has said something about selling the house to my husband, brother and I so that it’s no longer in their name - would this work, as a way of keeping the property in the family but protecting it from being considered assets of theirs?

  4. Coping Skills: Everyone in the family is stressed to heck, and it’s going to get worse before it gets better. Can anyone recommend any free/cheap support groups for cancer patients and their families, either in the Long Beach (CA) area or online?

I’m sorry, I know that my phrasing and whatnot are less than concise in this post. As I said, I’m stressed and TBH I don’t have the energy to go back and edit and rewrite.

Thank you, everyone.

Oni no Maggie

2

You’ll find a lot of general info for cervical cancer here.

And there’s info on treatments (what to expect, side effects etc) here.

And there’s info on support/coping here.

The site’s based in the UK so some of the info will be UKcentric, but it will give you an idea of what to look for in local services.

Best of luck.

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I’m sorry to hear about your Mom.

I would always recommend a second opinion on any cancer treatment. Different doctors may have different philosphies about how aggressively to treat various cancers. There may be more aggressive treatments with higher success rates or conversely, there may be less aggressive treatments with fewer side effects that have almost the same success rates.

Don’t assume that you know what side effects to expect with chemo, the side effects vary depending on the drugs used and the doseages. Not all chemo drugs and dosages cause hair loss, although fatigue is to be expected with most of them. Discuss this with your doctor so you know what to expect, I know people that have sailed through some of the “lighter” chemo regimens with almost no side effects.

In terms of the radition, some of the side effects can be the same, like fatigue. She should probably also expect some localized side effects, she will being “burned” by the radition in a sensitive area.

Even though I am not a doctor I will go out on a limb and guess that your mom will be able to feed herself and get around during the course of the illness.

In terms of finance…this is important…ASK FOR HELP!!!

You need to ASK the hospital or treatment center if they have any financial aid programs. They will not volunteer this information but I have heard of people that ASKED, filled out the forms and got their 6 figure cancer treatments at little or no cost. If the facility that her doctor uses will not provide financial aid, research the option and other facilities…call around.

Another financial option would be to research clinical trials. While your mom may not like the idea of being a guinea pig, this is not always the case with a trial. Often they are researching “tweaks” in the standard treatments and you may be able to find a trial comparing 2 different but conventional treatments, or comparing the standard chemo with standard chemo PLUS an experimental drug. If she is accepted into a trial then she could be eligible for free treatment.

For support groups I have used the acor mailing lists at www.acor.org. The lists I have used or very good, but I have not ever subscribed to the GYN-Cancer list. Before you subscribe you may want to check the list archives ( a stored collection of all e-mails and responses) to see how active that particular list is.

And as for coping, just take everything one day at a time ( or if even that gets to be too intense, on hour or a minute at a time). Don’t obsess over the bad stuff that MIGHT happen, some of it will never happen and the stuff that does will come soon enough anyway. Try to get back into a routine as soon as possible, although this usually doesn’t happen until treatment starts…your family needs to resume a normal life, even if you have a “new normal”. Be aware of the need to maintain and defend your own emotional life…quite often the cancer experience overwhelms the emotional state of the family to the point where if the patient has a good day, everyone has a good day and if the patient has a bad day everyone is miserable and scared. You still have other valid stuff happening in your life aside from you mom’s illness and you are allowed to react to that, it’s OK to be happy even if your mom is miserable. Take care of yourself and your own health.

Hope this helps

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My sister had two cancer diagnoses in the last year. Breast cancer and thyroid cancer. She had 5 surgeries altogether, along with chemo and radiation. As far as side effects - she lost her hair. There was fatigue, but not horrible. A day or two after chemo she was very tired. Fortunately she was well-insured, because although she’d lost her job, she kept up her COBRA payments. However, after the main treatment ended, she’s still on some very expensive meds ($600/mo, I think) and will be for 5 years and her COBRA was ended. Her oncologist gives her samples of that med so she didn’t have to worry about the cost. The docs will try to work with you, but there’s no denying that cancer treatment is very expensive, and someone has to pay. Usually that someone is the insurance company or the patient. I think it’s very possible that the hospital will expect them to use their savings and 401K to pay for it.

Good luck to your mom. My mother has beaten breast cancer and uterine cancer (while she was carrying me).

StG