I haven’t been very active on the website recently but I always take time every day to read the trials and tribulations of so many brave women. I get strength from reading their stories . Now I need them more than ever.
Since I was first diagnosed with PPC in 2011 this unwelcome visitor has arrived back at my doorstep twice . In 2016 it reappeared in my peri aortic lymph nodes and I was treated with Carboplatin . Then in early Dec 2017 it reappeared in the guise of Lobular Breast Cancer . I had a mastectomy followed by 24 sessions of Radiotherapy . I was then prescribed hormone blockers Arimidex to prevent its return .
I felt achy and weak with really bad joint pain and some bowel problems so at my last oncology appointment the oncologist ordered a scan. My CA125 was 44 three months earlier so he redid it to check the trend . Arimidex causes bad side effects in some women so I presumed I was one of these women.
Yesterday morning I went to my appointment worried but also convinced that the Arimidex side effects would be the answer and I had already researched Glucosamine as a remedy . Then my kindly gynaecologist looked very seriously at me and then dropped the bombshell. There were two worrying changes . One was a pulmonary nodule and the second thing was my peri aortic lymph nodes were swollen again . My CA125 was now 50 . The alien was well and truly back !
The MDT will meet next week to decide my treatment plan and I will then be given an appointment . It’s left me reeling with shock and quite depressed . They don’t know if the lung nodule has spread from my PPC or my BC. I was gene tested earlier this year and I don’t have the mutated BRCA genes so my BC was a separate Primary.
If anyone has had a similar experience particularly the lung nodule bit can you please let me know how it was dealt with . I really need to banish this unwelcome alien for good !
XXX
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Written by
IrishMollyO
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Hi Molly, I’ve been thinking about you and am so sorry to hear that you got some unwelcome news. I’m sure your team will come up with a very good plan to address it, though. I just want to send you lots of support and will be keeping you in my thoughts and prayers. You will knock this back into oblivion! 💚
Thanks Gina for your encouraging words. My breast cancer was dealt with very efficiently but fighting PPC has been a different story. If you read any of my previous posts from two years ago you will see that being refused the Carbo Taxo combination for recurrence in my lymph nodes upset me very much. Now that it’s back in the same lymph nodes I’m doubly angry and said so on Wed ! Will have to wait and see what they come up with . Take care
Sorry you’re feeling so down with this beast being back again!
I can’t offer advise about your lung nodule just support and encouragement that you’ve beat it into submission before and as hard and daunting as it feels you’ll do it again!
Fingers crossed the plan starts soon and good luck with it xx
I’ve just restarted chemo (Carbo/caelyx) for my first recurrence. As I felt well and there was no evidence of disease progression on scans, my CA 125 went to 426 before I restarted treatment. This happened quite quickly after a scan and appointments and I tried to delay so I could enjoy my holiday, but they then chucked a lung nodule into the mix. Everything happened quite quickly, so I’ve not really got to the bottom of it yet - the scan report from before did also mention ‘shotty para-aortic nodes’ which were new to me! Obviously I’m at the same end of this as you are, but when I see my team next I will be expecting a full scan report and explanations. So far chemo hasn’t been too bad although I’m still on the meds - we’ll see tomorrow!
I hope all goes well and that the alien gets back into its spacecraft and b******s off, lots of love Ali x
It seem we have a lot common so it will be really helpful to compare notes over the next few months especially after the reports and plans we both get from our respective MDT meetings . I will post after mine. Meanwhile we will fight on !
I am so sorry to hear your news! Thoughts and prayers are with you! Shortly you will have a plan and will again set out on the chemo train hopefully it will be a short and not too complicated journey back to health!
Take Care of yourself!
Are you going to the coffee morning in Dublin on the 21st?
Thanks for your reply . I knew the blooming thing wouldn’t be content with last years episode ! I did hope though that my hormone blockers were what caused my latest symptoms . I do intend to try and make it to Dublin if I can. I’m finding traveling really tiring right now . Hope to see you there then
Molly, sorry to hear about the recurrence. You would have thought that OC and BC together filled your dance card for a whole lifetime.. no need for any of them to recur.. grrr.
Three months after my initial OC diagnosis and debulking surgery, I insisted on having a mammogram which revealed an unusual spot (density) in one of my breasts. Fine needle biopsy revealed it was just a cyst filled with liquid that was quickly drained, but oh my... I definitely did not feel up for booking a secondary cancer experience. My hat comes off to you, for managing both.
Don't have experience with lung nodule but hope your treatment plan is one that results in a dropped ca125 and little side effects. And then a long remission. Hugs, Maus.
Thanks Maus for your good wishes. Despite all this I have lead a charmed life up to now. My BC was Primary which was better than secondary. I’m hoping that this nodule will prove to be the same in which case I will also be the most unlucky woman in the world at the same time ! My lymph nodes are a different story . Despite knowing that women with a long remissions are recommended to have the Carbo/ Taxol fir recurrence I was only given Carbo even though I protested at the time . I expressed my anger with this on Wed so it will be interesting what they come up with !
Yah... If you want Taxol this time round, push for it.
Me, I'm trying to duck out of my last Taxol dose... taking the opposite approach . Just don't believe in it, for my low grade cancer... but that's more gut feeling than scientific evidence to be honest. Still, I think it's important that we believe in our treatment choices. Good luck with it. XX
Molly- what an absolute shite time for you. It really is the gift that keeps on giving. It would be interesting sometimes to sit in on one of these MDT meetings to see how they arrive at the plan. I had my CNS send me a copy of the minutes of the meeting where they discussed me (only the part concerning me- not any other part of the meeting). I do hope your appointment is soon so you can get on with the plan.
Your first line echoes my sentiments entirely ! I wish that I could get hold of minutes of my meeting. Getting information is like getting blood from a stone with some consultants. Open disclosure is a concept that’s only just getting discussed in this country ! However i will continue to annoy them with my never ending questions! To be continued. I hope !
Getting information is a passion of mine. Mainly given up with the CNS as you said blood out of a stone. I tend to go directly to the consultant secretary but so reluctant- why? Just why?
I have had a recent biopsy and wanted a copy of the report before I see the consultant- otherwise it is very difficult to know what questions to ask. I have found out at my hospital (Russell Hall Dudley) now has a “access to medical record department” . Patients can ask to have copies of any reports of them. You have to request in writing and they may charge for the copy. As I have a NHS email address I was able to do the request by email and there was no charge as they did not have to print it out or send by post. They were quick and sent it the same day!
Thank you so much Zena for your kind thoughts. I need some strong rocket fuel to get rid of them !
XXX
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Oh Molly O, this was the last thing I expected to read on this site. I am so sorry that this has reared its ugly head again. You surely don't deserve this. I hope the plan of action will send the aliens into outer space never to be seen again. I agree about the drip feed information. I asked was this the cause of my so called tendonitis pain in same hip when at my check up this week. My onc said it didn't make sense yet the guy in Dublin was sceptical I ever had tendonitis. Well my bloods were okay last year and I had ultra sound and ct scan so I guess I have to go with that. I think we need to be more open and look for accountability and it really doesn't matter who we upset, its our bodies we are talking about. I want to wish you well with the treatment, I hope to make it to Kilmainham tomorrow week depending on if we have someone at home with doggies. My mobility is getting better bit by bit would be better if I took the meds but slow to do so.
I was quite shocked when I heard first but I have now calmed down enough to be prepared for whatever they throw at this. As long as they actually do that of course ! I was reading that the stereotactic radiation that you did has been used for lung cancer. Only for you I would not have heard of it so now it will be one of my questions for them. I hope you have recovered from that particular treatment and that you are on the mend. I really do plan to make it if at all possible as I always come away happy that I made the effort . I haven’t registered yet so I hope the registration website is still open. I just wanted to make sure I have no late appointments on the Friday.
I totally agree with you that we must speak up when something is not quite right. I do speak up nowadays where I didn’t when I was diagnosed first. Now I have no fear of saying it like it is. Perhaps this disease turns on the assertiveness in all of us !
Until next week then Joan when I hope we meet. In the meantime I will post if anything new happens.
So sorry, MollyO. On top of the news, there's how hard we have to work to get information. Like you, I have had a lot of twists and turns on the way, and you really need to keep track of everything, don't you? My journey has taken me to breast and colorectal and it all gets a bit wearing! Hopefully they are on this quickly and can sort out a plan.
Thanks for your good wishes . The strange thing was I had the scan because of bowel issues . That wasn’t mentioned on Wed so I’m hoping it doesn’t become yet another twist in the tale ! In the meantime I have been carried along by the good will and encouragement from the lovely women in this site. Will keep everyone posted.
My prayer is that I will be seen by the best doctors who in turn will choose the best possible treatment . I did have hopes that the BC and treatment for that would have been enough for this year ! I was looking forward to the long summer months but it was not to be. I was reminded of the joke Q . How can you make God laugh ?
A. Tell him your plans !
On the plus said we have already had many glorious weeks of sunshine so I will not be missing out there . I am looking forward to lovely family visitors arriving at various times over the next three weeks. This was already planned before I heard my news.
I'm sorry I can't offer any help but just wanted you to know that you're being thought about and wished the very best of wishes. I'm sure your treatment will help you lots and you'll have many things to look forward to in the future. xxx
Hi Molly,I have 9 nodules on my lungs,dormant now.My GP wasn't too worried when I started to freak out about it as she said she knew many people who have nodules and live their lives for years.My Alien is back too ,so we're both back like little hamsters on the treadmill.Mine has returned to Ovary and nodules in lungs still present but dormant.Your MD team will have a plan and will have your best interest in mind.Your a strong,individual lady who has overcome many obstacles and will overcome many more.xx
Thank you so much as you really reassured me about the nodules. I was really shocked on Wed but have read up a bit in the meantime that calmed me down .so sorry to hear about your unwelcome visitors . I hope there is a treatment plan in place for you. Please let me know and I will let you know what they have in store for me. Take care and stay smiling .
Thank you so much for getting back to me. It’s good to know your aunt is hale and hearty and will be a source of inspiration to me. I hadn’t given my Alien a name but Ripley is as good as any ! I won’t know my next step until after Fridays MDT meeting so will put up a post as soon as I know. I really appreciate the encouragement from you and all the other lovely ladies . Take care
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. Just don't believe in it, for my low grade cancer... but that's more gut feeling than scientific evidence to be honest. Still, I think it's important that we believe in our treatment choices. Good luck with it. XX
There is light at the end of the tunnel
39 years old, PPC, stage 4B, Lymph Nodes enlarged
First 3 month review-update
