I'm a CUP cake too!

[susie.ryan]

Hi all
Thank God for this forum! I cried when I found it!
Have to say that the immense relief that I have obtained so far from just reading everyone’s stories on this site is incredible. Up to this point I have felt so very alone as no one could give me any advice, nothing to read, nothing to comfort me as I flounder in this no mans land called CUP!
I am 36 years old living in Limerick, Ireland and I also have a metastatic lump in my left axilla lymph nodes- Is any one else noticing a pattern to this location for secondary sites. The lump was found on the 16th Nov 2009, (this date is now more imprinted on my brain than my wedding date, sorry hubby!) diagnosis of metastatic disease came on the 17th Dec 2009 (happy Xmas to me eh!). I was told that investigations would need to be done to find the primary. I didn’t get the impression at this stage of the impending saga of trying to locate Wally (this is the primary’s name at the moment, at other times expletives are used).
I have had ultrasound of the breast, mammogram, biopsy, chest x-ray, ENT investigation, MRI, 2 cat scans (meow!), PET scan, gynaecologist investigation – another ultrasound due of the ovaries, Colonoscopy next week. The Breast Clinic has now passed my case to the head oncologist in the hospital for him to determine what happens next.
I hate the fact that things are moving slowly, I feel that valuable time is being lost and that I have very little control over this situation because of the “uniqueness” of my situation. I hate that when I ask questions of my consultant you can see the struggle in her face to try and find words to comfort me but not give me platitudes.
My father is also going though his own battle with bowel, liver and lung cancer at the moment and even he who knows the distress of a cancer diagnosis can’t get his head around the fact that the primary can’t be located.
I am trying to keep my spirits up but as time wear’s on and the gap between tests becomes more stretched out, I feel that my positivity and sense of humour is being slowly eroded. I am trying to meet this challenge head on and keep a sense of humour despite the severity of the situation. I have also received a boost from the stories recorded here to date and the fact that people have survived several years when to this point I have been told that prognosis is not something they can advise me on. This forum has proved to me that remission is possible and in some cases a full return to health can happen.
Thank you for giving me the boost I needed to face in to the battle ahead.
Hugs to all out there who are endeavouring to deal with this either as a patient, spouse parent or friend.
Susie

[John Symons]

Thanks for posting Susie. Your story is all too familiar from others who have encountered a medical profession unsure of what to do. CUP patients need early involvement of specialists with CUP experience and efficient arrangements to manage diagnostic investigations to get as many clues about "Wally" as possible. CUP patients tend to be bounced between MDTs and specialists and this causes delays which are frightening.

We can't and don't offer medical advice but the Draft Guidelines for the management and treatment of CUP are on the NICE website. These documents are in draft because the Guideline is out for consultation to experts to make changes before the document is adopted for England and Wales and N. Ireland in July of this year. P61 of the full draft makes mention of the proposed way of handling patients with Adenocarcinoma involving the axillary nodes. If you delve into chapter 5 of the evidence review (separate document) you will find more background information that informed the recommendation.

Some people don't want to research their condition and I understand that position. If you did, then you might want to find a tactful way of ensuring your oncologist is aware of NICE's thinking (albeit subject to change in review). Suggesting to a doctor in the "Free State" that it might be worth looking at an English document might need careful handling!

To get a quick link to the NICE documents go to our front page and look at point 2 on the Message Board.

I hope others will add any comments - whilst this forum is not overactive there are people who look-in and I know it means a lot to get some comforting words even if the specifics of the disease are different. Most will have experiences of the diagnostic pathway as patient or carer.

Best wishes, John

[susie.ryan]

Hi John,
thanks for this, its fantastic to have something substantial to read that is pertenant to my situation.
I shall gauge the situation when I meet the Oncologist and see what is put on the table.
I also want to thank you personally for setting up the website and this forum, I feel empowered!
Susie

[Doddgirl]

Hello Susie,
good to hear from you. Hope things aren't too bad.
We do seem to be having a similar experience. My step-father is currently battlling terminal lung and stomach cancer so I know how you're probably feeling about that.

I also have had a difficult time with medical specialists who become either very meek or totally obnoxious when faced with questions they really don't know the answer to. I've seen 5 different consultants in 3 different hospitals and been subjected to numerous 'examinations' but don't have any clearer idea. On more than one ocassion my notes and information have not been available to the specialist concerned - this is very worrying. There seems to be a lack of coordination between hospitals and sometimes within hospitals. The 'procedures' are disorganised and the whole system is over-stretched. And, I haven't actual seen anyone who specialises in this type of cancer. It's terrifying sometimes!

Am about to meet with the head chemotherapy nurse so she can talk me through the pathology report. I had to ask 5 times for copies of my notes, and even then was only given letters sent between consultants, not actual reports. I still feel that there are huge gaps in my knowledge of this situation. I'm not sure if that's because the medical team really don't have any answers or they are reluctant to discuss particular issues with me. I stopped asking questions for a while because I was getting such a hostile reponse and I was too tired to fight over it. I have sometimes felt as if I'm being treated like a nuisance child - but now they want me to make this 'decision' and I'm not sure what to do. I don't have much confidence in the information I have because it's been so confusing and every time I ask for clarity it seems to be construed as a personal insult.

Having said that, I have just come through the chemo, which I tolerated reasonably well and the chemo nurses were fantastic. I am hopeful about everything.
I hope you get your 'answers' from your oncologist in your next meeting. Stay in touch. Andrea x

[Doddgirl]

Oh dear, that was a bit of a grumble, apologies Susie.
I should also say, I know how you feel about waiting - it can leave you strung out and exhausted. It took three months to get a treatment plan for me. This is at least a month longer than NICE guidelines suggest for cancer patients. However, in our cases it is probably best to use as many investigations as is sensible to narrow down possibilities because it will influence the treatment plan.

Whatever is decided for you next will be the 'best' that your medical team can offer and if they have carried out investigations and surgery, they do have a lot of information. I'm sure the whole process will get tighter and faster when enough CUP patients present themselves.

Apologies again for off-loading like that - it's not all bad.

Hope the near future brings you good news.
Take care
Andrea x

[Liz. North]

Dear Susie - apart from the fact that I'm more than twice your age, we share same symptoms: axilla nodes, scans etc. Except that you had a colonoscopy. I did ask oncology teams etc about that and the answer came: cancerous nodes in the top half of yr body don't come from lower organs. Ho hum, but I keep asking. Am heading for chemotherapy: the AC Combination which is apparently safe for my age group.

From what you say I guess that, like me, you feel well physically but mentally all over the place: whom does one tell? And when one tells, people say: 'but you look so well!'. The diagnosis takes over: medical appointments fill up the week. Work [I'm a freelance writer so not fully retired] shrinks away.

Would love to hear from you. And all very best wishes. Liznorth.

[Arcticnurse]

Hi Susie
I'm sorry to hear you have joined the club but dont let yourself get "down".
It takes a fighting spirit and some humour to get through this.
I remember doing research when I was told it migh be lymphoma. Then it was the waiting game. For the longest time I thought the primary was just an illusive "ghost"
No one mentioned CUP until I had started Chemo but by then I was too ill from the side effects of the chemo to think about it.
But the chemo was working within two treatments The lymph node was shrinking. Then I started to do some research. The Canadian statistics were horrible. But these were other peoples numbers not mine.
I proudly wore my "I'm too sexy for my hair" T-shirt and had my bald head tatooed with henna flowers.
I completed the chemo after 6 treatments. That was April 2008.
It was about that time I found this site. I thank John and Jo Friends for this wonderful site. It has made me feel I am no longer alone in this journey.
I had and opportunity to meet him at the Conference in October.
Dianne
another CUP cake

[susie.ryan]

Hi All
apologies for not updating sooner.
To bring everyone upto speed, I have started treatment woo hoo!
The past couple of weeks were somewhat hectic, a lot of sudden activity and then starting the treatment plan and then getting my bearings with being sick and managing the side effects ( prior to this my most serious aliments ever has been occasional migraines and a dodgy stomach! So truth be told I have never really had a very sick day in my life!)
Anyway, the results of the biopsies from the colonscopy and endoscopy came back negative as was suspected.
It has been decided to treat me like a breast cancer patient as per the recommendations / guidelines. So I’m on AC/T which runs as AC every 2 weeks for 4 go’s and then followed by Taxol every 2 weeks for 4 go’s, this brings me upto the end of June. Where they will assess my lump and determine how much radiotherapy they will do and then onto surgery to remove the lymph nodes.
I have just completed my 2nd chemo yesterday and it went well all things considered, hair loss has started which means I need to get my ass in gear and sort out the wig (better to have it and not want it, than want it and not have it!)
The acid reflux, nausea, headaches & pains and extreme coldness are possibly the worst side effects only for once you manage to get one under control another becomes more prominent but at least I am well sorted for how to handle things this week when they kick off.
The most important update that I have for everyone is that after just 1 chemo treatment the lump has reduced from the estimated size of 7.5cm to 5cm. Happy days and so comforting as its proof that the treatment is working!

Andrea ~would like to say a special thanks for the link to the http://www.scarfhut.co.uk website as they have plenty of stylish options and I got to say over here the shops just don’t have a decent selection of styles or fabrics. I am well and truly sorted for scarves now. Also no need to apologies for grumble as I took it as adding to the pool of info.
Part of me has been very frustrated by the number of tests that have been conducted, however my biggest bone of contention at the time was that once the tests were conducted by depts outside of Oncology the urgency was not there, and the efficiency element was lost were multiple tests could have been conducted closer together or even simultaneously.
However on looking back I am thankful that so many tests were conducted as there is an element of comfort to be taken from the fact that they have searched for the primary high and low, as I know that I personally would have been uneasy about starting any treatment if all stones had not been turned over.
Liz~ from the extensive conversations that I have had with various consultants and specialist nurses I have also been told the same thing that if a secondary appears in the axial nodes the primary will have originated in the upper body, however they did do the head to toe search for me, and I think we are all the most knowledgeable about our own bodies and if you feel that there is a particular part of your body that may perhaps be giving problems then I would most definitely pursue it.
Dianne~ I firmly agree with your statement that the statistics are some other peoples numbers. And I also subscribe to the fact with statistics that even when the percentages are dismal and suggest 80% failure, I think that there’s 20% for whom it was not a failure and I can be in that statistic, someone’s got be, that’s the way I look at it.
Maggi~ I’m very sorry to hear about your diagnosis. And I like everyone else, who follows these stories wish you the best of luck. It’s a perfectly natural reaction to feel overwhelmed by all of this as I am a firm believer in the knowledge is power principal and the full knowledge of our situations is elusive and that for me personally was the hardest thing to accept. With regards to planning you can only deal with the here and now. I am subscribing to short term planning when asked by colleagues when they can expect to see me back at work and how long this will go on for, and my answer is short and sweet- I don’t know and this is time for me to prioritize me now. Hang in there and remember that you are not alone and avail of the support of people on this site and support groups in your area as well as the counseling services within the hospital.

On a final note to all I hope that you are all doing well.
Hugs
Susie

[Arcticnurse]

Hi There

For the first time I can finally say "I know what you are going through". I had a lump in my right groin.
I have been a fan of Jo's Friends for almost two years.
It is two years since my chemo and I still feel great. Too great as I'm gaining weight again. Eating too many cup cakes.
I went to the CUP conference in London last October.
I was sorry that there were few survivors there but it was interesting.
I am happy that there is sharing of research from the US & Europe.
I love checking this site and am interested in new postings.
Thank you John.
I celebrate each day and make Cup Cakes when asked to bring treats to functions.

Dianne
The Canadian Cup Cake

[John Symons]

Well done Susie - great stuff! I'm not a fan of statistics when it comes to CUP. There is simply insufficient knowledge and data for accurate epidemiology. I agree too about listening to your own body. The medical profession rely too much on site specificity, I think. CUP tumours and/or the spread behave differently - about all we know - and assumptions that a secondary in one particular part of the body means the primary should be coming from some particular area is based on known primaries. That's my non medical view!


Thank you Dianne - good to hear from you too - delighted to hear good news.

[susie.ryan]

Hi
I'm back again!
Just a quick update as to where things are at with me.

I just celebrated my 37th birthday yesterday and was reminiscing back to Xmas 09 and my thoughts and fears that I would not reach my 37th birthday and am glad to say I'm here and have no intentions of giving into this demon! I celebrated last night with a few glasses of champagne and a fabulous Margaritta!

Well I finished Chemotherapy about 7 weeks ago and since then I am trying to get the old engine running again and boost my energy levels, if anyone has any tips out there on things I can do I would really appreciate it (i can stay going now for about 3 to 4 hours but after that I'm like a zombie), I know they say that it will take a while for the energy to come back but I have to say I havent the patience to wait!

I am now officially about to embark on what I have deemed to be stage 2 of my treatment, which is the operation. At previous chemotherapy sessions various doctors were mentioning mastectomy however I am glad to say that my consultant in the breast cancer clinic has been very confident in stating that there would be no advantage in having a mastectomy as it still remains an unknown as to where the cancer originated (despite ongoing investigations in the gynaecological area). At this point i must actually post a warning to others who are in a similar situation to myself that should other units want to conduct various invasive tests while you are on chemotherapy please let your oncology team know and get their advise on whether or not to proceed with the test(s) while on chemotherapy, as the risk on infection is greatly increased.

So my surgery is taking place on the forthcoming wednesday 28th July and they are going to do a left axillary clearance and to all intents and purposes i believe this is a very straight forward procedure. Following that 6 weeks later they plan on starting me on approx 5 weeks of daily radiotherapy. And then.... well we shall wait and see.

Oh and I have one final question for those of you who have already gone through chemotherapy, has anyone else experienced issues with their eyes! I am constantly getting infections in both eyes for the last month and frequently have swollen eye lids (have done a fair bit of research on this on the internet but nothing helpful has turned up). Oh and how long does it take for your eyelashes to grow back???

Hope everyone is doing good.
Hugs to all
Susie XXX

[John Symons]

Hi Susie - I was keeping quiet hoping someone other than me would respond! Some good news and well done you for keeping positive. I think you have passed on some very useful advice too. I do hope all went well with the op and you are now recovering well.

Hopefully another patient will pick this up and respond to the detail - there are people out there reading if not replying!

Best wishes,
John

[Arcticnurse]

Hi Susie
The energy will be "on hold". Take it slowly and review your levels in 3 months. I'm 3 months past the two year finish of my chemo. I'm full of energy in the morning but still wilt in the afternoon so I plan my day around it.
Everyone tells me I look great. I just smile.
I recently enrolled in an exercise class and am working at shedding a few pounds.
Keep on fighting.
Dianne