Lower back pain, hips and thighs

[dgrundy]

I have often read the posts on this site and never really been able to put into words what I wanted to say. I was diagagnosed with ov cancer stage 3 in nov 2008 at the age of 32, I had my first course of chemo in the dec which was then halted as they were unsure of the diagnosis and the doctors opted for surgery. In the January I had a full hysterectomy and part bowel removal( due to scar tissue twisting bowel). Although both ovaries were clear, cells were found on my Peritoneal so chemo was restarted and by the July I was in remission. I am now coming upto my 5 years clear and although I am elated with regards this but I am still in constant pain. I have been through various tests for chronic diahoria and spend my life on painkillers and imodian. I am grateful to be here and watch my children grow, but i would also like to be able to enjoy their childhood with out mummy having to rush the toilet or stop walking because of pain. My gp has now suggested physio for the back pain, but I am unsure of its help. I feel I am now moaning and constantly going on whenever I visit my gp. Does anyone have any suggestions. Many thanks

[TinaWright]

Hiah,

I really do sympathise, I am in agony right now mainly mine is nerve pain at the moment and I think I have started it off by either poor posture playing with my grandaughter or maybe knitting. I also have Chronic FMS so there is always some part or other that pains me.

I also worry more now with this lower back problem, pains or twinges in the groin etc, you just can`t help feeling scared, can you?

The advice I have is firstly don`t worry about feeling a menace with constant trips to the GP, that`s what they are there for and that`s what they are paid for, its their job and if they are not helping you enough then second, third or even more visits maybe needed.

Don`t be afriad of asking for an exray or a referral to your nearest pain clinic, most hospitals have one and they may be able to offer you a variety of treatments. Some may help, where others may not, but try whatever is being offered until you find your relief.

My GP always tells me that gentle swimming or simple exercises in the local pool may help because we are then exercises but the water takes the weight off our body making it more gentle. Your GP may be able to offer you a few sessions on the NHS. And some swim baths do a class for those who need water therapy. Also water aerobics which may be too much for you just yet. Pain managment clinics often have a hydrotherapy pool too and here they will offer you something maybe a little more individual by trained physiotherapists. This may be better than the public swim baths because the water will be much warmer however, often such classes are in the baby pools which are a fraction warmer than the main pool.

I hope this helps and I hope you start to bounce back real soon - All the best

Tina xx

[Hidden]

Hi,

I am sorry that you are in so much pain, I don't think you should have to put up with pain.

I live in Chester..... I see that you are quite local does this mean you went to the WHL and then to Clatterbridge? I also was diagnosed in 2008 and was in remission for two and half years and then had a recurrence, I then had further chemo and I am now in remission for a second time...inbetween chemo's I had a lot of pain in my back and down my legs and couldn't walk far...which was largely ignored by my oncologist until my GP sent me for a ca125 test (as my oncologist doesn't do them) it showed a risen ca125 (that he then ignored) and it wasn't until I had a second ca125 test through my GP that he decided to send me for a scan that showed a recurrence (result was more chemotherapy) I mention this because have you had all the relevant tests? I don't want to alarm you but if you are in pain don't be afraid to make a fuss....either way they should look for a reason why you are in so much pain. ....best wishes love x G x

[dgrundy]

Hi Tina, I have tried gentle exercise and swimming which pulls on my scar, I have finally lost nearly all the weight I gained threw Chemo, current lose 2stone 2 with about 8 pound to go but will look into pain management clinic.

Thanks and Take care x

[dgrundy]

Hi Gwyn,

Yes I was treated at Clatterbridge and although all the nursing staff were fantastic, I never feel like my consultant listens and has been dismissive of the pain and diahoria. I have been back and forth to the gp who has refered me to a bowel clinic but all they seem to do is give me one form of tablet after another and different pain killers. The pain in my right hip has been constant since 2008 and the lower back pain and shooting pains in my legs are getting worse, hence why they feel I need physio.

I havent had my ca125 checked in over a year but previously they just tell me its fine.It is due to be done in July before my 5 year checkup on 9th August.

I am 38 and feel 98, I just want to enjoy my childrens childhood as I feel that they miss out on so much because of mummy being ill all the time. I want to enjoy my life and try and put the cancer to the back of mind but with the pain its hard.

Thanks so much for your reply hun has helped me realise I can make a fuss and to have someone who knows how I feel, because I am sure my family are sick of listening and feel I should be full of joys of spring everyday now.

Take care

[Hidden in reply to dgrundy]

I think you should go to your GP and request a ca125 blood test then it will give you some Idea where you are at, I think we probably have the same oncologist (clue --choose a colour) he didn't take any notice of the results of my blood test and when I had a second test about a month or so later my GP faxed him the result I then had an appointment, but he had no idea why I was there, I reminded him that I had a rising ca125 so he said " there's probably no need but I'll send you for a scan" (there was need) so please don't be fobbed off....if you want to send me a private message I am only too glad to help...best wishes love x G x

[hil65wil]

I cannot believe ladies do not have a CA125 as a matter of course. Each time I go to the Christie it is one of the tests they do as routine along with FBC kidney function etc.

Persevere with GP and oncologist. I wish you the best of luck and soon pain free.

Hilary xx

[Hidden in reply to hil65wil]

Hi Hilary,

They stopped taking the ca125 test routinely about three years ago when trials showed it was of no benefit to people who have already been diagnosed.

They concluded from the trials that it doesn't prolong life.

My guess is you get the tests done because you are on treatment as they want to see if the treatment is working..... It isn't done as a matter of course when in remission and not on treatment, but are just being monitored....I can get my ca125 taken through my GP but even then my oncologist doesn't want to know the results as he doesn't want to treat a recurrence too soon.(but wait for symptoms)

The trouble is I had symptoms for well over a year before he decided to recognise that it was symptoms.... this was only after I had two blood tests done via my GP ... . I was then given a scan....So the worry is that if I say that I have symptoms they are ignored because because he can't feel the recurrence on examination..... as my recurrence was in the back (not in my tummy) best wishes love x G x

[Jackalfie37 in reply to hil65wil]

I am due to have bloods taken next Tuesday after seeing my GP because of pelvic and lower back pain, she didn't mention they would check my ca125 levels. When the nurse takes my blood should I mention ca125 and ask if they will check them too???

Any help is appreciated x

[dgrundy]

Thanks everyone for your help. i have contacted doctors for appointment to request my blood be checked. yes Gywn same consultant and he never knows who you are and everything you ask is nothing to worry about. thanks for offer of messaging would be nice to chat to someone who knows were I am coming from.

Hilary they stopped doing bloodtests about 3 years ago as they dont see it as a marker and whenever i have them done the only results i ever get back is liver count which was damaged through chemo and all the pain medication they keep giving me.

Thanks so much xx

[hil65wil in reply to dgrundy]

Have replied to Gwyn above. Glad I'm in Manchester and not Chester. Sounds as though you need a new consultant. Keep pressing for answers.

Best of luck

Hilary xxxxxxx

[Hidden in reply to hil65wil]

Hi Hilary,

Yes well I think not taking a ca125 blood test is the NICE recommendation and not anything to do with region or hospital, it has more to do with how far down the line you are... for instance I am coming up to five years this year and they only take a ca125 test when I am on treatment....but don't get me wrong my oncologist is very experienced but he has not got a good bedside manner...my friend changed oncologist because she couldn't stand him, but now she is no longer with us...so I am grateful for the fact that I am still here.

so I think he must be doing something right... on recurrence I was given a very poor prognosis.....Love x G x

[hil65wil in reply to Hidden]

Don't know what happened to my post to yours above this one. Anyway gist of it was that I have had CA125 taken since 2001 even through the 8 years of remission and it has definitely been an indicator for me, Bedside manner is so important as well as the expertise.

Keep smiling and writing your wonderful poetry.

Love Hilary xxxx

[Hidden in reply to hil65wil]

Hi Hilary,

Wow that is a long remission and I thought I was doing well, and fancy you having a blood test done all that time...hummm I am beginning to think that my oncologist is crap and maybe it is just pure grit that I am still here, you are right his attitude is important... and this isn't all... he now only wants to see me six monthly so I asked him if I was in a better position now than I was, and he said "of course not you have a progressive disease that is not going to go away" I said "you don't do a scan, you don't do a blood test, now you don't want to do an examination either" he said "it hasn't been found that an examination will save lives" I give up ....last time I saw him I was too tired to argue...but I am so glad you told me this Hilary we are so near and yet so far Chester/ Manchester ...perhaps I should fight love x G x

[hil65wil in reply to Hidden]

Yes you know your own body keep fighting. I have been told that mine is progressive now but slowly hence my third line of treatment since 2009. Went today and bloods still too low for treatment so wait another week. At least they have risen to 1 from 0.3 but have to be 1.5 or above before any more treatment. I have not had an internal or external examination except for my blocked bowel episodes.

I called in at the rehab centre and spoke to the complimentary therapy manager and he has given me some gentle exercises to help boost the immune system and a DVD also they have a drop in on Thursday evening for hypnotherapy to help with mood and reflexology etc so might give it a go this Thursday. Enquired about aquapuncture but that is a no go whilst on treatment but definitely going to do it when I have finished to combat this wretched tiredness.

My next step is to contact my contact at the local hospice as my hair has almost gone and I can access the hair dresser and also the councellor. So much help out there but I have had to find out for myself pity it isn't publicised more.

My brother lives in Chester, Westminster Park used to be a bobby. Would love to meet up when we go visit him.

Keep strong, keep fighting and don't take no for an answer.

Lots of love and cyber hugs

Hilary xxxxx

[Hidden in reply to hil65wil]

Hi Hilary,

Yes that would be good I live one end of Town and your brother lives the other, so we have the City inbetween we could meet in the middle for a coffee and chat... Chester has plenty of coffee shops... I will pm my tel number to you so you can let me know when you are in Chester. Love x G x

[Whippit in reply to Hidden]

ggggrrrrr I'm furious on your behalf and dgrundy because you seem to have an oncologist who seems to dismiss your feelings. It's not a matter of 'saving lives' and just because he feels he can't save yours isn't an excuse to deny you care and any tests or appointments that you need to maintain your current remission.

He should be reminded his job is to make your life easier and if you'd feel reassured by meeting him then he should make provision for that.

Don't forget you can always ask for a second opinion.

Hoping things get better with this colourful oncologist.

Much love xxx Annie

[dgrundy in reply to Whippit]

Thanks so much Annie,

I just thought it was because he must see so many people that he cant remember them all, but I am not the only one who feels he is dismissive.

I am going on tues to have my Ca125 blood test and hopefully there hasnt been a rise, ( last checked in Aug 2012 and was 33). I have seen so many doctors and been to so many different clinics to find a reason and no one seems to be able to give me an answer but I am not alone as this website has proved.

Take Care and thanks again for your message the support I have received is amazing.

Kind Regards

Donna xx

[Whippit in reply to dgrundy]

Dear Donna

There is a sub-group here for younger women. I think it might be worth ringing the Ovacome helpline to ask about it. It might well be helpful for you. There's a Members' Meeting on 18th May in London when there are some distinguished guest speakers so lots of chances to ask questions.

Hope you get to the bottom of your health worries. xxx love Annie

[dgrundy]

Just an update thanks to the responses I have had it has given me the push I needed to tackle gp again, I am off to Doctors in a bit to pick up blood form for ca125 and they have now requested xrays. will let you know how I get on.Thanks again you have all been a great help xx

[hil65wil in reply to dgrundy]

Best wisjhes. xxxxHilary

[Hidden]

All of my CA125 tests in the past have come back at the bottom end of the normal range despite being at Stage 4. When I was really bad with 3.5 litres of cancerous fluid in my abdomen, the tests were still the same. Where symptoms are showing, CA125 is used at the time of diagnosis as an indication that cancer may be present. It's used as a tracker too if symptoms appear again. Personally, I'm so glad I'm out of the CA125 roller coaster. When I was being monitored this way, before it was realised that the test was completely useful to track my own disease, my nurses avoided telling me the results because the wanting to know can be a very stressful process for the patient, particularly as a rise in CA125 can be as a result of other inflammatory conditions such as endometriosis and fibroids. I had some of my small bowel removed when I had a 17lb cystadenoma removed and was told it was because the cyst was adhered to the bowel but when I investigated further by letter to my hospital, I found out that the tissue was 'suspicious'. I wasn't monitored presumably because at the time, the growth was of low malignant potential but had I been told at the time, I may have been more aware of my symptoms when I was ill but undiagnosed. I've since learnt that doctors routinely fail to tell a patient if 'suspicious tissue' is removed during surgery. I went to my GP, but was sent away with a 'Come back if you have any more problems' answer. I've had this answer a lot in my life. I have no idea why doctors do this as it takes a lot of courage for many women to go in the first place as they don't want to make a fuss. I've been ill many times since I was young and have had many surgeries on my abdomen having had my uterus, fallopian tube, ovaries, gall bladder and appendix removed at various points. Whenever I went to see my GP, I was always sent away. This happened when I went 3 times and was in considerable pain with an ectopic pregnancy and my fallopian tube ended up rupturing. I was lucky to survive that one. The idea seems to be to send people away to separate patients who are ill from those who aren't. Cynical? Yes, I seem to be don't I? I've had carboplatin and whilst my disease isn't stable, I'm not yet at a point where I need more treatment. I get lots of pain with pins and needles in my arms, legs, hands, feet and head. When I try to exercise, the pain is unbearable. I get pain in the abdomen and right down my legs. I'm as weak as a kitten when this happens. When I said I missed work, my oncologist suggested I might go back and I thought, 'Well, you certainly have no idea what it means to have this cancer, do you?' but I didn't say that at all. Because of all of the adhesions and the condition, I take Macrogol every day to avoid constipation but this often causes diarrhea and the rushing to the loo that comes with it. I've tried not taking it but my bowel just doesn't work without it. It's hard isn't it - this disease I mean? All the uncertainty and the lack of understanding of how symptoms affect a person, is just the icing on the cake. Don't feel bad about going to see the GP.... that's what doctors are there for. Take very good care.

[dgrundy in reply to Hidden]

Hi TinaB

I am sorry to hear you have had such a hard time, i know how it feels to be one thing after another from day one of my periods I have been up and down, I was diagnosed with polycystic ovaries at 17, in 1997 I started fertility treatment to have my son. After a messy divorce I got pregnant with my daughter in 2003 which was a welcome shock. In Sept 2007 I became ill over night and was so violenty sick I ended up in hospital and after laproscopic surgery they found suspicious scar tissue but as you I wasnt told at the time it was only in the November when I went for results that Cancer was thrown into the mix, it wasnt what I expected especially as I had my 7 month pregnant sister with me. Then the rollercoaster began, an appointment at oncoligy was made for the next day then allowing me a week off for my birthday I had my first course of carboplatin and taxol, I lost my hair and periods stopped as expected but when I turned up for my 2nd appointment they told me they thought they may of made a mistake but felt with past history a hysterectomy was still the best option. Jan 2008 I had surgery and whilst open they found scar tissue twisting my bowel, so the damaged part was removed. My ovaries were clear but grade 4 cells were found in my cervix and ov cells in pertoneal, so not only was i too young, it was also rare so Chemo restarted. Fast forward 4 years and i have been clear of cancer they keep telling me it is dorment, but the pains and constant diahoria has stopped me being able to work, when I have days I cant leave the toilet or days I can barely walk how do I do it. I attempted to go back to college as a step forward but found it to much and caught every illness going round.

You would think that the doctors who specalise in the subject would have a better understanding of how it effects different people,this website has shown me that I am not the only person who has continued pain and problems so why isnt there more available.

I do understand that the use of CA125 isnt always useful and i do know the stress, I have terrible nightmares in the week leading upto a checkup. I just feel at the moment it is the best option open to me as all other avenues are not finding any answers, I just want to be able to take my daughter to feed the ducks in our local park before she is to old without it being complete agony.

I hope you get some answers hun and keep strong.

Take care and lots of Love Donna x

[Hidden]

Like you, I have had problems with periods from the word go. The pain from the ectopic pregnancy and cholecystisis (inflammation of the gallbladder) which are meant to be severe in type, were akin to the pain I felt at period times. Well, of course, this can be multiplied by the number of months a person has a period a year .. and by the number of years I had periods, which is 26. I was given Ponstan but whilst this medication helped, I was incapacitated for many weeks a year and sent home from work on a regular basis. Period times were fraught with the anxiety of my employer(s) being displeased and I was always grateful when they began at weekends. Like you too, I had infertility treatment. Mine consisted on the usual treatment at the time ... Clomid, followed by Tamoxifen and then Pergonal. Later, I had two rounds of IVF which weren't successful. I was wondering if you have been diagnosed by primary peritoneal cancer rather than ovarian... which is what I've got. Recent research suggests that there may be a link between ovarian and peritoneal cancer and the drug Clomid. More research is needed to proove or disproove this theory I believe. You take very good care too x x

[dgrundy]

Hi, I had one course of clomid which made me ill and then had laser drilling on my ovaries. I was diagnosed with ovarian cancer but was all in peritoneal which apparently is rare and usually secondary cancer.I did question it when I ws diagnosed but they have told me it is ov cancer.

I have heard of the link to clomid, i signed a release form to my medical files when I was having treatment to help in the research if they can.

Much Love x

[dgrundy]

UPDATE for all the lovely people who have messaged me on the plus point my CA125 is lower at 21 so they are ruling out relapse, xrays show wear and tear and signs of Arthritis to my lower spine, so they are trying physio and more painkillers. Starting to wonder what part of my body is next to fall apart. Oh well I am alive and still standing just about lol so I shouldnt grumble.

xxx