Hi all
So i went down for my surgery and woke up to some different news.
When they oppened me up they found some nodules on my bowel and pelvic wall which they removed and tested positive for cancer. Instead of proceeding with the orginal plan and removing the tumour, giving me a hysterectomy the decided to stop the surgery close me up and want to start me on chemo instead.
I felt disappointed i wanted the cancer out of my body but have to trust my ongologist.
Scared and sore.
Im 33…my incologist said i reacted really well to chemo last time and im fit and healthy and decided that this would be a better option.
Im confussed
Hi hon
im so sorry it didn't turn out the way you had hoped. You are right to be a bit confused. It's so hard, just when you get your head around one thing then something else.
im new to this whole thing and am still adjusting but I wanted to say that I hope the newest round of chemo will go well.
Hugs.
Xxx
Hi leanne ....this news must be so confusing for you but like you said we have to trust the oncologist to know what she,s doing. ..if only they could explain the possibilities beforehand you wouldn't be wondering what,s going on now.Maybe your feeling a little fuzzy from the op and all will be revealed later.Try just to take one day at a time and recover from this .It must be so dissapointing for you.Glad to hear from you though....I've been thinkin about you.big hug lynne x
Yeah i need to take each day as it comes...just praying the chemo works and go from there. Nothing is ever straight forward when it comes to cancer but then i suppose its not ment to be.
Leeanne xx
Hi Leeanne your story is so similar to mine. I thought of it more like a persistence than a recurrence. I had a 4.5 cm tumour 6 months after brachytherapy etc. I did have the radical hyster but only because I had horrible symptoms of discharge too ugly to go into. Anyhow after surgery was told they couldn't get the nodes that had lit up on PET scan and that bits of cancer were all through my peritineum and in my para aortic nodes. That was January. I then had 6 cycles of chemo carboplatin and taxol with Avastin and am now cancer free. It's amazing, it worked and now I am getting back to my old life. I am a little fatter and semi bald but am looking forward to going back to work and even maybe dating. It was horrible but saved my life. Feel free to private message me if you like Jayne
Hi Leeanne,
Sorry things didn't go to plan in theatre.
I hope you aren't too sore and have time to make a full recovery before chemo starts.
Cara xxxx
Hi Leeanne,
Good to hear from you and hope you are feeling less sore today. This cancer journey is one big curve ball, never what we expect. It will probably take a while to get your head around the change of plan as it means more treatment, but as others have posted, the chemo cocktail seems to really do the job, so try to put your faith in it. Wishing you all the very best Leeanne. Xx
Hi Leeanne
How disappointing that things didn't go to plan. It sounds like they have a good plan B and as you can see from Jayne the chemo option works really well.
Take care and stay strong.
Jillx
Hi Leanne
I am so glad you posted. It is so hard when you have your mind set on one thing, and then the team changes it. I struggle every time they tell me something different. You are so right that nothing is straightforward with cancer.
But I guess the oncology team have their plans and back up plans, and it sounds like they think you're a great candidate for the chemo treatment.
Do you know what chemo combination you will be having? I think it might be carbo/taxol/avastin as Jaynee was having. I have been having carbo/taxol for the last 5 months, so if you have any questions about those chemo drugs feel free to message me.
Rosie xx
Thankyou ladies, so nice to know others have been through a similar situation.
What am i to expect with the chemo and how frequently will i have it? I dealt with my last lot of chemo quite well. Just hoping i can do the same again
Leeanne
Thanks so much for your message...would love to keep in touch after everything you have been through feels very similar
Leeanne x
Sending huggs to you
Hi Leanne
With the chemo, I had carbo/taxol. I think you may be having carbo/taxol/avastin. I cannot comment on the avastin side of things. But I can offer my experience in regards to the carbo/taxol.
I had 5 x rounds of carbo/taxol - 1 every 3 weeks, but I know some people have weekly doses. I had the weekly doses combined and given once every 3 weeks if that makes sense. So had quite a LOT at once. I would be on the carbo for 1.5hours and on the taxol for 3.5hours, with all the pre meds and flushes between and waiting, this is an all day thing, literally I would be there from 9am - 5/6pm.
I believe the taxol is the really strong chemo drug. They told me I would lose my hair within 10-14 days of the first dose, and sure enough on the 10th day I lost all of my hair all over my body, including eyelashes and eyebrows. Before my hair fell out, my head became so painful, like it was sunburnt, I couldn't sleep. I think this is why a lot of people shave it before it falls out. I shaved it after it fell out, because there were some patches.
Only in the last month has my hair started to grow back (even though I have just had another dose), I have some eyelashes and eyebrows, and a bit of a fuzz on my head.
Other than the hair loss - I did experience quite a lot of symptoms.
Extreme fatigue - literally wouldn't leave bed for days, and then get some energy for a few, and then be tired again. (Although I am pregnant so that is probably part of my fatigue as well)
Nausea - but they give you tablets for this, which work almost instantaneously, so you just take one as soon as you feel the waves of nausea
Dryness of skin and mouth - moisturise moisturise moisturise!
Mouth ulcers - salt water wash
Extreme constipation - I actually ended up in Emergency because I was in so much pain. Just tell the team and they can give you somethign to help. I did and have not had this problem the last couple of months.
Chemo brain - just feeling out of it.
Peripheral neuropathy - this is extreme tingling in your hands and feet that lasts for hours. It is so extreme and painful that you cannot focus on anything else. Do tell your team about it, because it can become permanent, so they will want to know how long it lasts etc. I told my team and they lowered the dose of the taxol a bit and it did lessen the intensity of the tingling and I actually haven't experienced any tingling for the last month. This was by far my worst symptom because it feels like you have needles in your hands and feet going a thousand miles per hour.
I won't go on about all the do's and don'ts while doing chemo, because I am sure the nurses will go through that with you, and I have blabbed on so much.
But this was my experience with it, but chemo effects everyone differently, and I have heard of people having very few symptoms. Also, my doctors believed that my symptoms were more intense because I am pregnant also.
I hope I offered some insight into the world of carbo/taxol. If you have any other questions, please ask.
Do you have a start date for your treatment yet? Do you know if you will be getting weekly or fortnightly doses?
Rosie xx
Hi Leeanne :-)
I am sorry that you came round from your op to a surprise and I do hope you are gradually coming to terms with it. Personally I think it is great that your team have come up with an alternative, tailor-made treatment option for you. Obviously this is in part due to the fact that you reacted so well to chemo previously. In your shoes I would be focusing on the fact that you have been given the possibility of being completely cured without necessarily having to live the rest of your life with stomas.
(((((HUGS)))))
Be lucky :-)
Tivoli
Hi Leeanne
I had chemo weekly with every 4th Friday off. My symptoms were nowhere near as bad as Rosie's. I lost the hair at 3 weeks and lost it mentally at 4 months. I regained my composure for the last month. I worked up until the end of the third month but gave it up when I needed blood transfusions for low haemoglobin levels. I am going back to work 2 months after chemo finished with an Annie Lennox/Billie Idol type hairdo. I burnt the wigs. Before then I am going skiing for a week and hiking for 11 days. You can bounce back fairly quickly. Of course we are all different and this may not be the same for you.
Jayne
I cannot express how much hope and positivity you ladies are giving me...im lay here in my hospital bed having a low moment and this has really picked me up.
Thankyou so much...your my inspiration
Leeanne xx
Hi Leanne, hope your feeling better today and back to being your positive self. I agree with you on how reading messages on here can turn your feelings around from feeling down and negative to feeling more upbeat and positive .I'm so glad I chose to join .I love my family dearly but they do not give me the positivity that I get from here.I am also at the stage were I don't know what is happening going forward all I do know is that I feel fab today so why worry and let it take today away from me.I'm 3 months off finishing what your about to start.Operations have never been discussed with me as 1st time around ...stage 2b I was told there was too much to have an hysterectomy, so I had what majority on here seemed to have had finishing with Brachatherepy. Result from this after scans I was given the all clear they told me it had gone.They did tell me that it could reaccure so if I had any symptoms to get in touch.Unfortunately it has and I have just finished the treatment your about to start.As far as I know I reacted really well to the chemo and I feel they have sent me away with the same response as the 1st time that if I have any symptons get in touch.I will see my Consultant next after 4 months her telling me that she will miss me out of having a scan,to give me a break.I had hardly any problems when I was on the chemo....taxol/avastin/?? (carnt think at the minute)I was hardly poorly just the tiredness initially after having it,I had no sickness .I've been really lucky both times and taken to it really well.I had mine every three weeks and was at the hospital all day...just to mention I had mine on a Friday so every three wks I would go to hospital on the Wednesday for blood tests ,water sample and blood pressure,then again on Thursday to see the Consultant basically to make sure all the tests were ok to go ahead with treatment on the Friday. That went on every 3wks and I had 6 sessions.,only on the 5th session did I notice my feet starting to tingle and the pads of my fingers felt a little numb.I mentioned this to the Consultant when I went to see her before my 6th and final session and she said that they would reduce the dosage of the taxol...which this is a side effect from Taxol ....if you experience this Leanne make sure you tell them straight away as earliest they can do something about it the symptoms might not be as long lasting.They told me that it can last up to a year before my feet feel right again.It's been an absolute bitch for shoes/sandals.It's called Periphial Neuropathy and I do take quite a strong nerve pain tablets as the pains in my legs was bad, but I have no pain at all in legs now.My feet I just carnt begin to explain to you the different sensations I have in them.But it hasn't stopped me from going out and about.If you do have the taxol we can speak about this at a later date about the feet.If you was ok first time with your treatment I carnt see why you wouldn't be this time.I'm with you every step of the way and it always helps to talk to others who have had the same experience,s. Are you still in hospital??.Hope to hear updates soon.Keep positive darling it goes a long way.Big hug..lynne xx
Hi Leanne, hope your feeling better today and back to being your positive self. I agree with you on how reading messages on here can turn your feelings around from feeling down and negative to feeling more upbeat and positive .I'm so glad I chose to join .I love my family dearly but they do not give me the positivity that I get from here.I am also at the stage were I don't know what is happening going forward all I do know is that I feel fab today so why worry and let it take today away from me.I'm 3 months off finishing what your about to start.Operations have never been discussed with me as 1st time around ...stage 2b I was told there was too much to have an hysterectomy, so I had what majority on here seemed to have had finishing with Brachatherepy. Result from this after scans I was given the all clear they told me it had gone.They did tell me that it could reaccure so if I had any symptoms to get in touch.Unfortunately it has and I have just finished the treatment your about to start.As far as I know I reacted really well to the chemo and I feel they have sent me away with the same response as the 1st time that if I have any symptons get in touch.I will see my Consultant next after 4 months her telling me that she will miss me out of having a scan,to give me a break.I had hardly any problems when I was on the chemo....taxol/avastin/?? (carnt think at the minute)I was hardly poorly just the tiredness initially after having it,I had no sickness .I've been really lucky both times and taken to it really well.I had mine every three weeks and was at the hospital all day...just to mention I had mine on a Friday so every three wks I would go to hospital on the Wednesday for blood tests ,water sample and blood pressure,then again on Thursday to see the Consultant basically to make sure all the tests were ok to go ahead with treatment on the Friday. That went on every 3wks and I had 6 sessions.,only on the 5th session did I notice my feet starting to tingle and the pads of my fingers felt a little numb.I mentioned this to the Consultant when I went to see her before my 6th and final session and she said that they would reduce the dosage of the taxol...which this is a side effect from Taxol ....if you experience this Leanne make sure you tell them straight away as earliest they can do something about it the symptoms might not be as long lasting.They told me that it can last up to a year before my feet feel right again.It's been an absolute bitch for shoes/sandals.It's called Periphial Neuropathy and I do take quite a strong nerve pain tablets as the pains in my legs was bad, but I have no pain at all in legs now.My feet I just carnt begin to explain to you the different sensations I have in them.But it hasn't stopped me from going out and about.If you do have the taxol we can speak about this at a later date about the feet.If you was ok first time with your treatment I carnt see why you wouldn't be this time.I'm with you every step of the way and it always helps to talk to others who have had the same experience,s. Are you still in hospital??.Hope to hear updates soon.Keep positive darling it goes a long way.Big hug..lynne xx
Hi Leeanne I just wanted to send you love and hugs, wishing you a steady recovery one step at a time. Xx
Hi again Leeanne :-)
Right now I am extremely envious of you. I have resented my surgery ever since I first became aware that my formerly cat-walk abdomen had been converted to something resembling a cave painting of a mammoth hunt, but yesterday I copy-typed my surgeon's Greek notes into Google Translate and am now in a state of shock.
It transpires that following my EUA I had been staged at 1b2 and therefore a candidate for a hysterectomy. Like you, during surgery bits and bobs were sent off for urgent testing but unlike you, tested negative. The tumour, however, was larger than anticipated and re-staged at 2b. At this point I believe that I should have been closed up but my surgeon carried on regardless. I imagine it like some kind of gory rummage sale. The notes tell me that they removed 'the top half of my vagina, almost all of my lymph nodes and a piece of omental measuring 26 x 11 x 0.8cm'.
I went on to have chemo-rads anyway and have been cancer-free ever since, but it is my firm belief that the outcome would have been the same without the unnecessary loss of body parts. I am very lucky that despite having so many lymph nodes removed I have shown no signs of lymphodema and it is quite likely that the vertical scar up my abdomen would have been the same. But in all honesty, I could have done without losing the top 50% of my vagina.
I'm feeling quite bitter about it but I hope that you are feeling cheered.
Be lucky :-)
Tivoli
