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USPC Discussion

Catmalogen
Posts: 19
Joined: Jul 2012

Greeting Ladies,
I am delighted to have found this online resource. I live in Ireland, and have, like so many of you being treated for Adenoendometrial Cancer with a mix of Papillary Serous Cancer in the pelvic nodes. (micro & Macro levels). So a bit of a nightmare mix as a Type II very aggressive cancer (with high risk of recurrance)

At 48yrs of age and working in the health care area, I had no alarming symptoms.. was having menorrhagia for 6months (heavy period) regular cycle and put it down to recent stress in my life and probably start of menopause (My husband of 20yrs had an affair and left to be with his new partner who was pregnant)! So YES I was stressed and heart broken !!

Following a D & C my Gynae Consultant did not suspect anything and inserted Mirena Coyle to control bleeding. I was not tolerating the coil and begging him to remove it........ And then the results of routine biopsies taken during D&C came back positive for endometrial adenocarcinoma. My staging scans were clear and I had a TAH BSO with clearance of pelvic nodes. Surgical staging gave all a big surprise.. Papillary serous cancer in micro and macro levels in two of the pelvic nodes. So I believe my staging is USPC Stage111C.

I had 8 cycles of taxol and Carbo followed by Vaginal Vault Brachytherapy. My surgery was in July 2010 and I finished Chemo/Rad therapy in Feb 2011. My follow up management is every 4 months with OBGYN Surgeons, every 3 months with Prof of Oncology, and I generally have either a PET scan or CT every other times. At 4 - 6months intervals. All clear so far.

I developed a breast mass in September 2011 and have had two lots of surgery to remove areas of tissue for surgical biopsy, most recent 4 weeks ago. They are graded B3 and pre malignant. The surgical and oncology teams have discussed me at lenght and I am also involved in the many discussions. All feel that a mastectomy at this stage would be radical intervention (even if I want it!). So having regular Breast Mammograms and Ultra sounds. (MRI's of breast and PET scan shows up as hot spot due to surgery..)

For all of you starting out on this journey of treatment.. It's not easy, but if I got through it.. anyone can. Taxol & Carbo Caused my bone marrow to crash after first cycle and I needed bone marrow stimulating shots with each cycle. Nausea was not a problem, but joint pain was terrible as was the the gradual build up of peripheral neuropathy. I suffered from terrible spasms of left hip pain.. MRI showed a cyst growing out of my iliac crest and all believed it to be pressing on a nerve. Aspirated under CT and histology was neg. I had three admissions for neutropenic sepsis and much antiobotic later and blood transfusions.. made it out the other end! Even if I have leg lymphodema, however it is well managed.

I am now well and still having routine checks..(2yrs on) next lot of scans in 3 weeks. My Surgical teams and Oncologist are fantastic. I never worry about their jundgement as they are doing things according to World Standards.. and I believe I have received treatment in line with latest research. I have asked if they sould have consider Herceptin, but understand that it may be used for recurrance.

Life moves on... and I have moved on with it.. As I remind my Surgical teams .. I am not a bloody statistic.. (We are all individuals and positive thinking is a key..) I have trouble with that, given all.. but becoming more enlightened and have gained so much wisdom.

I am in a divorce battle now..and have met a wonderful (if one can call men wonderful) man.. (they do try sometimes ).. He is whisking me away to the sun for 3weeks on his luxury yacht. My Doctors warn that I should wear Factor 50 !!!! Like hell I will.. I want some Vit D and a sun tan.. Factor 30 maybe but not 50!

Life is for living.. And we can overcome much, the mind is so powerful ! It can kill or heal one.

My story, Cat. July 27th 2012 2230hrs.

nempark
Posts: 595
Joined: Apr 2010

Wow! You are definitely a winner-your husband a big time loser. Although your story is of horrific health encounters, I must say that you turned out fantastic after all. And yes, there are still wonderful men out there. I do hope you enjoy the three weeks in the sun and look forward and continue to enjoy life. You are doing very well and I wish you continued good health and happiness. May God grant you and your luxury Yacht's man a long and healthy relationship. Keep in touch. J.

HellieC
Posts: 455
Joined: Nov 2010

Long may you stay free of disease, Cat. You have been through the mill and still come out smiling.
I am in the UK (on the south coast of England) and there are a few other ladies on this board from outside the USA, so we get a really good perspective on treatments available around the world.
It sounds like you are completely happy with your surgical and clinical teams, and that is a major part of the battle.
Have a wonderful holiday - sounds divine!
Kindest regards
Helen

Catmalogen
Posts: 19
Joined: Jul 2012

Hi Helen,
Thank you so much for your comments. I do hope you are currently well, and enjoying some south English coast sunshine. Indeed I beleive this site is a reasonable perspective on some of the variations of treatments offered. And I was interested to read about IV Vitamin C and K3 used in USA as adjunctive treatment. However, as one knows no two cancers are the same, and without actual histology it is very difficult to clearly understand what is what. And doctors hate when patients read something online which may not be relevant.. cos they have to spend time discussing it with one !!!! -:)

I am happy with my clinical teams.. and I hope they are happy with me ! I do challenge them from time to time.. And as I have worked with most of them (Head of Service). What I am learning is a totally different language.. ie the language of the patient. Sometimes I really don't want to know the nitty gritty.. but always look at best treatment options in detail with Prof of Oncology.

Will keep in touch and as I am new to this site really haven't got to grips with it yet. Stay well. Best wishes Olivia

chachacha
Posts: 25
Joined: Jul 2012

Hello Cat.
I am starting my journey on Thursday Aug. 2 with a complete hysterectomy , removal of the omentum and mapping of the nodes. The only information I have is that I have serous papillary carcinoma on the wall of my uterus. It was found after getting a PAP with results of "questionable cells", which the doctor told me is pretty common. He did a biopsy anyway to be sure.
Reading your story and the many personal stories on this site is helping me be strong. I don't know if I will have to go through Chemo, but from what I have read, it is probably a sure thing. I was reading the discussion of bone pain from the Taxol and that has me concerned. I am active, I can't say super active, but quite active. The though of going through all that pain after the chemo really worries me. I suppose there is nothing that one can do about that.
I just want to thank you all for sharing your courageous stories.

Catmalogen
Posts: 19
Joined: Jul 2012

You will be fine, Trust in your clinical team and if they told you you need omentum and nodes removed its good. My initial diagnosis and pathology did not pick up the Papillary serous carcinoma so be thankful they saw it ! Its not easy to spot and I am lucky it was spotted in my lymph node removal. I wish they did remove my omentum now !! but my team had no reason to suspect it ! Don't worry about the Chemo eveyone is different. I got through it and I am allergic to all sorts, You will also, Dont worry about pain, lots of medications to control it. You will be ok.. Wish I could give you a hug Olivia

chachacha
Posts: 25
Joined: Jul 2012

Hello Olivia.
Your courage and medical background have given had a calming effect on me. Thank you and I want to send you a big hug back to you.
So happy for you that you are ok and enjoying your life. Nothing like being on a yacht to put a smile on your face!

Catmalogen
Posts: 19
Joined: Jul 2012

You will be fine, Trust in your clinical team and if they told you you need omentum and nodes removed its good. My initial diagnosis and pathology did not pick up the Papillary serous carcinoma so be thankful they saw it ! Its not easy to spot and I am lucky it was spotted in my lymph node removal. I wish they did remove my omentum now !! but my team had no reason to suspect it ! Don't worry about the Chemo eveyone is different. I got through it and I am allergic to all sorts, You will also, Dont worry about pain, lots of medications to control it. You will be ok.. Wish I could give you a hug Olivia

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Always love a upsc story with a happy ending. Thank you for the inspiration!

Liz in Dallas

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