Treatment didn't work

Hey Ladies

So a couple of weeks ago I had my first post-treatment MRI and it showed an anomally, Once I was informed about that I was booked to have a PET scan last monday with a follow up telephone appointment for 8th Sept. However only 1 day after my PET scan they called me to come in for a consultation for today (25/8/20). I knew it wasn't good as soon as they organised that.

Well, they found a hot spot in my cervix but it showed up in 2 different places for both the MRI and PET, so they want to do a biopsy there to check if it is active cancer or inflammation. 

Also, my cancer has spread into a number of lymph nodes in my pelvis and they were apparently showing up mega hot, or whatever term they use. 

I was given 3 options for treatment and I would love some cold hard truths from you lovely ladies on your experiences with these options as I'm left with a tough decision to make. 

1. Surgery to remove the lymph nodes, which comes with risks because now they are surrounded by scar tissue from radiotherapy. The treatment can cause numbness in the leg and also lymphodema as well as a risk of bleeding during the procedure, which is a concern. This treatment is the one they would like to do the cervical biopsy at the same time to reduce the need for multiple GAs. 15% chance of lymphodema

2. Cyberknife treatment - a new radiation treatment on the nhs that pinpoints the cancer cells directly, but the only place that does that is London and I might get rejected because of the high dose of radiation i have already had from my original treatment. Also it could take longer to get this done because of the biopsy that i mentioned above needing to be done. (Honestly, I zoned out a bit so I couldn't give all the details now). 5% chance of developing lymphodema

3.Chemotherapy for 18 weeks (once every three weeks). The drug would be one that makes me  lose my hair and there is no guarantee it would work. According to my surgeon, this is the least preferrable option.

They would prefer me to have the surgery and I have been asked to make a decision pretty sharpish (in the next 2 weeks) as the cancer being in the lymph nodes is a dangerous place and at high risk of ending up somewhere else in the body.The goal is to do something about it in the next 4 weeks.

I don't know what to do. I just got back into my mountain biking and I really don't want to have to deal with more setbacks, or have to deal with the risk of lymphodema. This is not including the possibility that there might be some active cancer cells left in my cervix and what may come if that is the case. 

Can you ladies please tell me your toughts and experiences with any of these things? 

Much love.

Michelle

I am so sorry you are in this position. I would however go for option 1 first. Get them out and have them perform biopsies. You wouldnt be the first lady whwre those hot spots turn out to be scar tissue and infection. You are just fresh out of treatmenr, let them double check . And rhen O would opt for cyberknife treatment in combination with chemo if possible.

 

Youll need to go through chemo fjrst before trying immune therapy. Also, ask your doctors about a total.pelvic exenteration

 By no means a walk in the park but life saving!! Wishing you all the best ❤❤

Hi Izzzy

Thank you for your post. The pelvic exteneration is a massive no for me. But hopefully it never comes to that. 

My main fear about surgery is it's going to take away my ability to ride my bike comfortably and do other fun activities like climbing. These are important to my enjoyment in life. Also the chance of lymphodema is really scary.

I don't have advice for such a big decision except to say I would likely choose the option your doctor's suggested as the best option.  It seems like the risks of the other options also outweigh the risks of that one. Mainly I just wanted to take a minute to say I am so sorry that this is where you find yourself and that I am sending all my best thoughts and energies your way.

Hi South of the Lake.

I am sorry to hear all this. I wouldn't worry about lymphodoema, that's usually quite manageable. Dealing with the spread is the key issue. I would recommend you ask to join the advanced side where there are members who have tried all these treatments. You might liase with the lady called Nicky who is in similar position and considering chemo.

Exenteration isn't an option if it has spread outside the pelvis. You would need to get the spread under control first. I know you say it's a no but you may change your mind when you have processed all the information should it become an option later.

Good luck,

Karen 

Hi Southofthelake,

Sorry you are having such a battle at the moment.  I agree that option 1 would be my choice.  I had a radical hysterectomy with lymph nodes removed in March.  Although I know that lymphoma is a risk, it hasn't happened yet, but it is a small price to pay in the scheme of things.  There is a chance that by going with the surgery they might find that it is scaring/infection ect.  One of the things I have learned on this journey is that scans only tell you so much.  It's the histology that gives you an accurate picture.  Also, I'd always go for the GA, knocked out is the way to go!  Recovery goes by quickly and before you know it you'll be back on the bike!

Good luck with whatever you choose to do.  
Much love

Xx

Hi Southothelake

Oh my, what a decision to be confronted with.

I'm biased on account of having had a rough time with lymphoedema: I have to wear a custom made high compression stocking to maintain my swelling and toe caps because my foot is affected - very difficult to find  a pair of shoes to fit both feet now.  I can't do long walks or go running any more to mention just a few of the ways my life has been impacted , albeit with time one does adapt.  However it seems I have been particularly unlucky in terms of the lymphoedema although I haven't yet come across any good studies on the subject. 

The main problem with chemo seems that it is the least likely to work and, although your hair would grow back, I guess could also result in permanent side effects?  I think if it were me I would want to further investigate option 2 as long I didn't feel I was losing too much time before getting treatment.  I like the idea of radiation that pinpoints the cancer directly and it minimises the chances of lymphoedema - but as I've already said I'm very biased about that.

Don't know if this helps or confuses.  I wish you well in your decision making.

x

 Thanks for your words of advice ladies. I really appreciate it.

I spoke to a councellor with macmillan and we went through some stuff and i found some info online that said cycling is a good way to manage lymphodema (if it should happen). So I won't be cut off from that at least.

My oncologist called me back in the day after my initial appointment regarding all this and showed me my PET scan and went through everything with me again. The scan calmed me down a bit. The anomally in my cervix wasn't coming up as hot as my lymph node so I am not freaking out about that for the time being. I will wait for the biopsy.

But I let my nurse practicioner know that I will go ahead with the surgery and I'll go through all the details that entails with the surgeon in a couple of weeks. Perfect timing for my treatment team to be off. lol.

I'm still scared of what may come. Mostly because I already have very low self worth, and if this went wrong then it would just plummet even further. But fingers crossed for the best.

How strange - I came on here to get some information and support and your post was almost written like it was me. 

I too have similar concerns that one of my lymph nodes, although hasn't grown in a year, they suspect it has active cancer in it still. So im

going to see consultant on Wednesday to discuss options. I have been advised I can't have anymore radio but I will ask about cyber knife. 

I have been told it's either surgery or chemo. Although surgery is what i am swaying more towards. I want it out! But mine is sitting on an artery and they are concerned about that... but for me chemo is the last thing I want. I'm hopeful that they can help me and on the phone my nurse said they want to help me get rid of the pain in having so I can enjoy my life. To me that reads positive! 

sending lots of love and hugs 

x

Southofthelake, 

Im really sorry you find yourself in this difficult position after all you've already gone through. I've never had lymph nodes removed or suffered from lymphoedema (yet) so im afraid I can't be of any help there. I think you may find more answers to your questions on the advanced forum. I know whatever option you choose will be the right one for you. Best of luck!

x Maria

Hi Locket, 

Sorry to hear you're still suffering too. It must be really difficult mentally to have to continue to deal with all of this. I hope you have a strong support network to help you through and that the pain eases for you soon. Definitely ask about the cyber knife. It's relatively new but showing some promising results. Best of luck on Wednesday, will be thinking of you.

x Maria

Hi Locket, I just noticed your posting on the advanced forum, are you okay or did something come up on your pet scan?

 

Hugs,

Suzanne

Southofthelake: i just want to give you a hug and tell you i am so sorry to hear this news :( cry

I would go for the surgery option.. chemo will always be an option. Surgery will not. 

Locket: i'm so sorry to hear about your bad news too. Lets hope they can remove it with surgery and that it will be cured. ?? Hugs 

Stay strong you two! Xxx Laura

Thank you.

Izzy - I thought I would get some information from the advanced ladies. My pet scan shows lymph node still active. Although not grown in a year it is causing me some grief. I'm hoping they can offer a safe surgical removal but possible will need more chemo and or other treatments. 

X

Ahw I am so sorry to hear this, is this node withi  the radio-field? If not, protonbeam radiation or a cyberknife treatment might be worth looking into

 

 

Wishing you all the best ❤ 

I had a second major op to tackle cancerous tumour in lymph nodes - para aortic - after the operstion I was told that the tumour had actually grown around a major artery.  Anyway, it was a big operation - 12 inch cut - nevertheless I still went on holiday a few months later and even had great fun bodyboarding in the surf in Portugal.  I have continued to be active - swimming, walking and cycling holidays.  I do have post radiotherapy problems now (well at least I think that’s what they are) but I really just wanted to say go for it, trust your medical team and keep on planning all the good and exciting things you want to doin your life.  Good luck.