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Post treatment complications/possible residual cancer , In horrible pain and feeling hopeless

jenny505
Posts: 1
Joined: Jul 2012

Hi. I'm new to the site. I was diagnosed with anal cancer stage 2 in Jan. 2012. Went through chemo and radiation. Survived that. I still had a residual lump that I was told not to worry about. Had a colonoscopy was all clear. I then started having pain at the lump site. Dr. told me that the residual lump had split open, he recommended giving it time to heal. It's been over two months, pain is much worse, and now he thinks I need a biopsy, that its cancer and will need a colostomy. My Radiation oncologist says that he wants to get the results of the biopsy, but radiation might be a better choice. As much as I hate the idea of having a colostomy, the pain and bleeding are so bad, and the pain meds are not controling it. My surgeon is out of town until the 12th of Aug, So I don't even have a biopsy date set yet. I am miserable, I have reached a point where i am so desperate for some kind of relief I kind of just want it to end as quickly as possible. My goal for each day is just to make it through so it's one day closer to seeing the surgeon again, and I don't see how I'm going to make it. The ER isn't really and option, cause they will just tell me I need to follow up with my surgeon. Sorry if I sound like a baby, but I honestly feel hopeless. The Pain is controlling my life. any advice at all?

z's picture
z
Posts: 1251
Joined: May 2009

So sorry for your pain. My suggestion is pain medication and also some type of lotion to control the pain. Some have used lydocaine (numbing solution). Lots of warm baths also helped me. I just hope its due to the radiation that it has come open. If I recall correctly I had a lump that eventually resolved, I just can't remember the time frame. January is only 7 months ago, so it really hasn't been that long. I wish you well, Lori. I am sure others will offer some suggestions.

pjs62
Posts: 95
Joined: Sep 2011

Hi Jenny;
I fully understand your pain. I was diagnosed with anal cancer July 14, 2010. I had the usual chemo/radiation treatment. Oct. 2010 after a colonoscopy was told in remission. Then not even a yr later I had so much pain ended up in the hospital for a wk where they found the cancer was back. They said only option is APR surgery (removing some of colon & permenant ostomy). I did get a 2nd opinion (& now have a caring more knowledgable med team). They did remove a tumor but my pathology report showed underlying cancer cells & drs were concerned with it spreading. So I did have the APR surgery Feb 2, 2012. I was scared to have a perm ostomy but I assure it its much better then all the pain I had from radiation. It does take time to adjust & heal but if you have an ostomy nurse to talk to & find a support group it helps with questions/concerns you have. I also found a great online support (like this one) but for 'ostimates'.
Maybe you can get a 2nd opinion to be sure your options. As for the pain in the mean time, try warm sitz baths with Aveeno (I still do this) & pain meds. Maybe an icepack (I sat on lots in the hospital!! haha).
If you have any questions about an ostomy please msg me. I know it helps having others to talk to who have one. Hope this helps. I'll pray you get some relief.

torrance
Posts: 118
Joined: Jan 2012

Jenny,

Wow, you really are miserable. I remember feeling the same way as I was recovering. It is so tough when you are in the middle of it. I am so glad you have come here to share with us and that you are letting us support you right now. It is also difficult for you to think things through while you are in this kind of pain. Be sure to have someone with you that can repeat and explain again and speak on your behalf, especially if you are taking pain meds. Did the ER prescribe pain meds for you? Take them if even just to get you through til your appointment. I too used ice packs for relief. I couldn't do the sitz baths as they were too painful to my burns. I am sorry that you are feeling hopeless, try and get your pain under somewhat control and it will help to look at your options in a better light. Keep coming here for support and comfort during this difficult wait.

Joanne

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Please keep trying to get through each day till you see the doctor. Radiation can work for months after treatment - don't give up - that lump could very well disappear. And if it doesn't, pjs, and others have really good advice on how to handle a colostomy. Please hang in there.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I'm so sorry to read of your situation, but do not throw in the towel yet! This lump could very well be just radiation damage. Radiated skin is very friable and the least bit of irritation can cause bleeding and pain. However, if there is a lump, it needs to be biopsied. I'm sorry you are still waiting for a date for that procedure. As someone else suggested, sitting in a tub of warm water may give you some relief or using a sitz bath that fits over the toilet. Lidocaine cream is numbing, which might also help. I know pain meds can help, but they come with the possibility of causing constipation, which I'm sure you do not need right now. Try the sitz baths and cream first. As for getting more radiation, if you've received the maximum dose already, that is not advisable. The max is 59, possibly 60 gys at the most. Do you know what you have already received? I wish you all the best and hope you'll keep us posted.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Thanks for joining or discussion:

In my opinion, it's not at all humane for these medical professionals to tell you these things like "I think it's cancer" and or "more radiation" when they haven't even done the biopsy yet plus when you are in all this pain not treating that pain and not scheduling the biopsy for two weeks. I am praying that you are well soon. Is there possibly a place where you can get another opinion(s)? I highly recommend you take a handful of stool softeners and some pain meds until you get some answers.

All the best,
Sandy

sissy310
Posts: 300
Joined: May 2010

Hello Jenny, I am so sorry you are going through all this. I had an 'ulcer' (residual lump) after treatment that my surgeon did not like - he was worried the cancer had returned and did a biopsy 4 months after I was done with treatment. Happy to say the biopsy turned out to be simply what was left from radiation. I still have issues (2 years NED) every now and then with severe pain and bleeding on that side so I just watch my fiber intake when that happens. They said that sometimes with stress or pushing, the cut opens up again and that is what causes problems. Hang in there and keep us posted. My doctor too warned me that if it was a recurrence he would be more aggressive and do an APR and I guess he was more worried than me until he got in there. So here is hoping your surgeon gets back soon and schedules a biopsy for your peace of mind. Sometimes the waiting is worse than the actual surgery or treatment.

Hang in there and take it day by day. And no you are not sounding like a baby. Not at all. You are in pain and are concerned. We've all been there and understand. Marilyne

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