Share your ovarian cancer or hysterectomy experiences

Miscellaneous and Personal Stuff I Must Share
1

My mom, who is 63, is going into the hospital on Friday to have a mass on her ovary removed. It might be cancer. What they’ll do is go in laproscopically and remove the mass and look at it right away, and if it’s cancerous, they will do a hysterectomy on the spot, and also biopsy her lymph nodes.

It all started when she had some light spotting. They did an ultrasound and an MRI and saw a small mass, about 1 centimeter (although I’m not exactly certain on the size because my mom wasn’t paying close attention :rolleyes: )

Anyway, that’s about all I know. I think I recall mom saying that her doctor told her that there was a 50/50 chance it was cancerous.

I know that pre-menopausal women often have benign cysts on their ovaries, but apparently since she is post-menopausal, the it’s less likely that she’d be getting benign cysts.

So, please share any and all experiences you or your friends or loved ones have had with any similar situations.

If she does have a hysterectomy, how long is the recovery?

Also, if it is cancer, will she automatically have to undergo chemotherapy or radiation?

One additional concern… Mom is a life-long smoker. She has always been very resistant to quitting. The gynecologist told her she really needed to quit, but my mom just concluded that the doctor was just mean and judgmental, and that she is going through this very stressful thing and the last thing she could do right now is quit. Can anyone share any information on how/why it would be especially important for her to quit now? Would it be detrimental to her healing process? Or has the damage already been done?

My mom is terribly frightened. Any information – good or bad – would be appreciated!

2

The recovery for a hysterectomy largely depends on whether or not there’s an abdominal incision. Mine was done without abdominal incision (they filled me up with gas, snipped and popped the thing out vaginally). The night I spent in hospital afterward was uncomfortable until all that gas actually passed (walking around helps, believe it or not). After that, I was pretty much fine as far as walking around and getting back to normal duties.

With an abdominal incision, she’s looking at about six weeks – which estimate I have based on when I had hernia surgery that required abdominal incisions – before she’s mostly normal, though if she’s like me, she’ll still be bent over a bit while she’s standing to ease the pressure on her abdomen even at six weeks.

My hysterectomy was due to pre-cancerous cells on my cervix, so I can’t offer any information about the treatment for ovarian cancer.

Best wishes to your mom for a benign result and a speedy recovery!

3

I’m sorry your mom is going through this and I hope it all turns out OK. I really think the stress and fear of not knowing is worse than most of all the rest of it.

I had a large cancerous tumor attached to one ovary and fallopian tube and had to have it removed, but I was pretty young at the time. It started out as spotting and graduated to severe pain before they realized there was something seriously wrong. After the surgery I had chemo, but didn’t need radiation. After the surgery I was in the hospital for about a week but out of commision at home for maybe six more. However, I was a child and this was almost twenty years ago, so I am sure her experience with recovery may be different.

Other than the ultrasound, have they done any other tests? Bloodwork?

I had some problems last summer and they ended up doing some blood tests and a CT scan. The CT showed a 3-cm cyst but the bloodwork indicated that it was not cancerous and best left alone. As far as treatment if it is cancer, the only times that I have known chemo or radiation to not be recommended are if it is at too advanced a stage. With such a small growth I don’t think that it would be likely to be the case, but I’m not a doctor.

As far as the smoking issue is concerned, my guess is that the doctor was primarily concerned that smoking increases risk of all kinds of cancer, not just respiratory cancers. As far as treatment is concerned, my experience is that you can NOT smoke while having chemo or radiation. Also, I’ve been told that in my own experience smoking would be especially dangerous; I think it’s due to some of the effects of some of the chemo drugs I had though.

I grew up in the area you are from. Is your mom there also? I may still know some oncologists there if you need a recommendation. Fairfax hospital is excellent, if she ends up needing to go to a more specialized place.

I hope it turns out OK; PM me if you want to ask any other questions

4

My mom was diagnosed with ovarian cancer a decade ago. She’s in good health today.

My mom’s experiences were a little different than your mom’s–she went in with a “suspcious mass” seen on ultrasound (I think) and had a hysterectomy on a Thursday in November. I believe she was taking hormone replacement therapy at the time and so was not exactly post-menopausal. But I could be wrong.

Post-hysterectomy, she was assured that her mass had been caused by endometriosis (I think–spelling and meaning both are suspect). But they did a biopsy anyway. The hysterectomy was not done laproscopically.

Sunday, she was informed that she had a small tumor which was ovarian cancer. Chemotherapy was started. The research then showed that having chemotherapy greatly reduced the likelihood of cancer spreading/recurring. But chemotherapy sucks. Mom’s was one treatment every 3rd Sunday–six treatments in all. Go to hospital Sunday noon, spend 18 hours getting IVs–some of which was frankly poison–leave as soon on Monday as the Doctor saw her and her blood pressure was not excessively high–Mom still finds that an unreasonable expectation–her blood pressure runs high, especially when at the doctor.

The first week post chemo, Mom had to drink LOTS of fluids, and felt pretty crappy–remniscent of morning sickness. Strong ideas about what she did and did NOT want to eat, little appetite. She had a steriod pack which was supposed to help with nausea, but which needed to be eaten with food or it made her nausea worse.

Week two, Mom was ok, but her immune system was depressed, so she was supposed to stay away from people.

Week three was the good week–health ok, immune system ok, but the next treatment was approaching fast.

She lost her hair after the first treatment, got it back six months or so later.

She also had a “second look surgery” six weeks or so post chemo, where they opened her up again, looked around, and probably checked some lymph nodes. Required more or less the same recovery as the original hysterectomy.

Post treatment, she’s had more frequent pelvic exams and Pap smears and CA 125 tests, but today she’s perfectly healthy.

I will refrain from being mean and judgmental about smoking. (I believe that smoking makes healing more difficult, but I can’t back that up offhand).

One last thought–keep in mind that laprascopic surgery is in some ways less scary, less scarring, etc., but is still major surgery with a significant recovery time. No driving, no lifting weights (or small children or heavy groceries) for a period of time. If she has chemo (or probably radiation) this will prolong the recovery time.

5

Thank you, kurilla, Jelymag, and Eureka.

The smoking issue is very aggravating to me. I also believe that it makes healing more difficult, and have done a lot of reading that supports this. I am dreading the struggle that we will go through. I’m willing to bet that she will be told to quit because it will hinder her recovery, and that she will ignore or resist this. I am dreading the anguish that this will cause us (me, dad and my brother).

But at this point, we don’t even know if it is cancer. One other thing is that she did have a blood test (I think it’s called a ca 125 test) and the doctor told her it came back normal. So hopefully that is a good sign.

6

Good about the blood test. The CA-125 is a tumor marker; it’s not perfect, I think only about 3/4 of women with ovarian cancer have elevated CA 125 results. But it is a good start, hopefully everything will turn out well on Friday.

7

First off, she’s very unlikely to quit. My advice is to just let her know you’ll support any effort she makes to quit. She probably knows all the hazards and drawbacks, and nagging isn’t going to do anything other than make her dig in her heels. And yes, smoking does hinder healing.

I had a hysterectomy about a decade ago. I was told that generally, a woman will be mostly recovered in about six weeks, but that it takes a full year to really bounce back. This was, in fact, pretty much my experience, except that my wound got infected and I had to get it cleaned and packed several times a day. Even through all that, it was a great relief to get my ovaries and uterus out.

8

I had my hysterectomy last year at age 43, It was done vaginally. I was back to normal in about 3 or 4 weeks. Back to work in two weeks.I am a smoker so although it is better to quit, it doesn’t necessarily mean recovery will take longer (I wouldn’t tell your mom that though, any inducement to quit is good)

9

I had an ovary removed when I was about 32 years old. I had no symptoms whatsoever. The OB/GYN found it during a checkup in preparation for a tubal ligation. The tumor/growth was pretty big, about softball size. At first he thought it was the uterus in an odd location and position. It was removed with a big ol’ incision and the recovery time as others have said was about 6 weeks. Immediately afterward I was totally wiped out energy-wise and the immediate post-op experience was not at all pleasant. The removed item was biopsied and found to be a “borderline lesion” which I found out later is a term for something that is sort of almost cancer but not quite, IIRC. In an effort to minimize any spread of whatever it was I took a chemotherapy drug of some sort, the name of which I do not recall. It did not cause any hair loss, but did compromise my immune system somewhat. I had pneumonia twice during that time, after which I discontinued that therapy on consultation with the doctor. I never had any reoccurrence anywhere. They checked the other ovary at the time of the surgery and it was fine.

Many years later, after other issues I will not go into, I had the rest of the internal equipment removed. That operation was done vaginally, and was less traumatic, although there was still a substantial recovery time. In my experience any surgery where there is general anaesthesia you need some weeks of recovery, as you tire easily. To me it seemed as if my body simply needed a lot of resources to heal. Since I was being paid regardless I took 6 weeks.

One thing in your mom’s favor is that post-menopause tumors tend to grow very slowly, or so I’m told. Or maybe that’s breast cancer, I could be wrong (IANAD).

Regarding smoking – I’ve been told it can increase the risks that occur in any general anaesthesia. She will probably be told to not smoke for at least 24 hours before the surgery. Obviously during the operation and hospital recovery she will not be able to smoke. So by the time she’s released she will be at least a couple of days without it. Perhaps at that time her doctor could non-judgementally help her with giving it up, since she’ll already have much of the nicotine out of her system anyway.

10

I wanted to pop in here and emphasize this point. I’ve had seven major abdominal surgeries – the first six were fillet o’ me. The seventh was laparoscopic and I assumed that since I wasn’t getting filleted, it would be a cake walk. In fact it was not. Part of that I’m sure was because my expectations were so wrong, and partly it was due to my surgeon making additional incisions (five altogether, I swear I have the Big Dipper on my belly) and really raking my entire abdominal region.

Two pieces of advice and one comment:

First, regardless of how her surgery is done, when she gets out of bed really encourage her to stand up straight. She will recover so much better if she does so and her guts really will not fall out.

Second–and again regardless of how the surgery is done–get a small pillow that she can use as a splint. She’ll need to cough and sneeze and having that pillow will help. Also if she’s a side sleeper, it’s nice to have the pillow to sort of press against her tummy.

As for my comment, the gas used in laparascopies hurts a lot as it’s absorbed. I’m not a doctor so I couldn’t tell you why, just that it does. The more gas that used the more it hurts. I had stabbing pains in the front of both shoulders that no joke felt worse than any incision I’ve had, like large butcher knives. Forewarned is forearmed IMO, so don’t be surprised if she complains of pain in her shoulders should she have laparascopic surgery.

11

Ah, so that’s what my father was experiencing after his laproscopic prostatectomy.

A friend had stage 1 ovarian cancer which they figured out after she had a series of cysts which would rupture. She had a hysterectomy and I think also radiation and chemo, and is doing fine now. This was maybe three or four years ago now.

12

I had tumors on both ovaries, and they were large - I was told like a Nerf football. The doctors told me it probably wasn’t cancer but the way they treated me I thought it might well be; I was lucky though and they were benign. My CA-125 was normal, also.

I had an abdominal incision (navel to pubic area) and although it hurt like hell when I woke up from the surgery, by the next day I was up and walking around and trying to talk the doctors into letting me go home. I would have been fine for the entire hospital stay if I hadn’t gotten some Naprosyn; that stuff made me really sick. I got out three days later with a Velcro garment that wrapped around my midsection to provide support; other than being tired I felt fine and never even used all the pain meds I was prescribed. Like others have said, it was a 6-week recovery although my doctor really felt it should be 8 weeks; he let me go back to work part-time at 6 weeks. I couldn’t drive for four weeks, and I actually quit smoking during that time - I smoked right up till I went into the hospital but afterward I couldn’t get out to get any cigarettes, and I already was dealing with the aftereffects of surgery so any discomfort I felt from no nicotine was nothing.

I’ll keep your mom in my thoughts. One thing that might help her is to visit the HysterSysters message board; they have tons of posters who have been through the same thing and lots of information on what to expect. I hope everything turns out fine!

13

Oh yes. Now I remember. I really did think that my guts were gonna fall out, no matter WHAT the doctor said. It certainly felt that way.

Incidentally, walking will really help your body recover. I hated doing it, but everyone told me that it would help, and I did believe them in this.

14

When are you expecting to hear something, nyctea scandiaca?