Hello, I’m new here

Good Morning Zoya

Welcome to the Online Community.

I am sorry to hear that you have had a diagnosis of womb cancer that is also affecting your right ovary. I can understand that you feel angry and afraid and this is entirely natural given the circumstances. It must be tough after having breast cancer previously. 

I had womb cancer last year- if you click on my name my profile will come up. You may want to consider putting something on your profile as it helps when you post on here. It is entirely up to you though.

It is good that you have your treatment plan and hopefully you have a date for the chemo to start. I did not have neoadjuvant chemo (done before surgery) but had surgery first, then chemo and then external beam radiotherapy. 

Am not sure what treatment you had with your breast cancer and whether it included chemo but I see you are aiming to continue to work through treatment. Everyone is different and chemo can affect us differently but there is no way I would have been able to continue to work through my chemo, in fact the oncologist told me that it was not a good idea as apart from the side effects- there were serious risks of infection. I did actually still manage to get an infection where I had to be admitted. My chemo was carboplatin/paclitaxel and was given in a 21 day cycle. For the first 2 weeks of each cycle I felt unwell and the last week was able to do a bit more. I still however was pretty weak most of the time. Are you able to work from home perhaps? It is something I recommend talking to your CNS/Doctors about. 

For the hysterectomy I was initially signed off work for 6 weeks. I had key hole surgery. This seems to be the norm. After the first 4 weeks I feel I could probably have done some paperwork type work or work from home. However my post op pathology came back showing I would need further treatment. After your surgery they will confirm through the post op pathology your stage and grade.

I can understand the feeling of not being able to cope and found it best to try to break things down into smaller steps. Focus on one appointment at a time. One day at a time. And if that is too much, one hour at a time. Talking to people at work is a good plan- I was actually at work when I had a big bleed so it was no surprise to the people I worked with. It does help though and once treatment starts they will notice. My feeling was that people would soon start to notice so it gave me a bit of control to tell them a little about it before the questions started. I found everyone was supportive. 

If you feel like talking to someone would help then I can recommend the Support Line. The number is below and they are there from 8am-8pm. 

Please also feel free to post on here as much as you feel will help, there are lots of lovely ladies on this forum who will understand and will want to help. They were a great support to me. Even just reading through some of the posts can help give you an idea what to expect.

I will pop a link below to a booklet that helped me last year in case you would like a bit more information.

Womb cancer booklet | Macmillan Cancer Support

I hope this helps a bit. If you have any further questions, please do ask.

I wish you well with your treatment.

Jane

Hi Jane,

thank you for your message. Yes I will be able to work from home, as my management is very supportive, even offered financial package to ensure not to struggle financially whilst going through treatment. I absolutely love my job and want work if my health allows me.

My first chemo is booked in September.

I was surprised how long I will need to be in day Centre for chemo, but it’s does make a sense.

I have prescribed carboplatin and doxorubicin, regarding cold-cap therapy it’s worked for you not to loose hair ? I want try this as well.

I have very long hair so they recommended to cut short, before I start treatment.

How long you stayed in hospital for surgery? Doctor was mentioning keyhole surgery, so probably I will get  the same.

Zoya

Hi Zoya

I am glad that your management will let you do some work from home and it is perhaps the best possible way. There may still be days when you feel rough and not up to it but they sound really flexible. I did find with the chemo the first few days were the roughest and I just wanted to sleep. I also had chemo brain and sometimes could not focus much and could not concentrate well. This was at it's worst during the first week and I found that the medication that you take at home for the first couple of days added to it. 

Regarding the financial side it is great that work have sorted a financial package but if at any time you feel you are struggling then the Macmillan financial advisors are great and will be able to tell you if you are entitled to anything. I was able to claim and was awarded PIP after their advice. You can also pick up a form from your GP to enable you to get free prescriptions for 5 years- and with the medications you may need- it soon adds up.

September is not too long to wait and if you are anything like I was you just want to get it started. The sooner you start the sooner it will be done.  My chemo days were roughly 8-5 ish. When you first get in they normally take bloods and there is some waiting around for results. During this time they put on the cooling cap for me and then as soon as the bloods came back it was on to the pre meds etc. One of my chemo drugs took 3 hours to infuse. The other took an hour. There were also several flush infusions where they run the saline through. 

With regard to the scalp cooling it is well worth trying. Most people that I saw using it had reasonable results. You are still likely to have some shedding. My first shedding happened about 2 weeks after the first chemo. I lost a little more each cycle and had shedding again after the last cycle. Overall I had some thinning all over but I had no bald spots. The scalp cooling protected my hair follicles. I got regrowth between cycles 2/3. I lost all body hair by 2 weeks after first chemo so I know that the scalp cooling was working. I lost eye brows and eye lashes. If I had lost my hair after the first cycle, I would still have continued for the hair follicle protection and regrowth. My hair was at it's worst for the 4-6 weeks post chemo- it was dry from the chemo and straggly. It was different lengths from the regrowth however during this time I was having 5 weeks of radiotherapy and I do believe the general side effects were still affecting it. My hair was shoulder length before chemo and was pretty much the same after chemo. Just thinner. There are hair care considerations so I will put a link for you to the Paxman site below. If your hair is very long and thick I would consider having it trimmed a little as it will mean that there is less stress perhaps on your hair follicles and less chance of the hair that is shedding to cause matting. However you could leave and see how it is affected. People say that your hair does not grow during chemo but I had to have my fringe trimmed several times and I had regrowth while still having chemo. Within 2-3 months of finishing may hair was thick. 

I found that scalp cooling was tolerable- there was some discomfort for the first 10 minutes or so but I took paracetamol. They suggest you do that. However after the first 10 mins or so I found I got used to it and it all felt numb. 

With the hysterectomy, I went in for the surgery for 8am. I was in surgery during the afternoon. Back on the ward early evening. I was standing within a couple of hours. Catheter was taken out 4am. I was walking around the ward at 530 am. I had a bladder scan to check I was able to pass urine properly. I was home just after lunchtime. The doctor discharged me mid morning and it took a couple of hours to sort meds etc. Mine was key hole. I had to take it very easy for about a week and then felt a lot better. There wasn't a lot of pain and didn't need anything other than the odd paracetamol. I had to give my self anti coagulant injections into my tummy for 30 days and to be honest that was the most painful thing due to bruising. There's no lifting or anything for 6 weeks. No baths, just showers. 

I had to wait for about 3 1/2 weeks for my post op results. Hopefully yours may come back a bit sooner but they will confirm the grade and stage of your cancer and helps the doctors make decisions about what further treatment is needed. My stage and grade and therefore treatment changed post op. I don't know if they have told you your grade and stage yet but it is something to prepare for- that it can change. 

Some links that may help

Carboplatin | Macmillan Cancer Support

Doxorubicin | Macmillan Cancer Support

Paxman Scalp Cooling | Changing the Face of Cancer

Recovering from womb cancer surgery | Macmillan Cancer Support

Womb Cancer Staging | Macmillan Cancer Support

Hope this helps, but anything else, please do ask

Jane

Hi Jane, thank you for very useful information, I did not know grade of the cancer may change after post op results, thank you fort his. My consultant probably mentioned, there is much to take in so I might forgotten.

Yes I cant wait to start, I feel once I started I can plan things around the working schedule as I do not know how I will feel.  I'm as well in my last Year of UNI, very challenging time indeed ahead of me, but I do not want postponed UNI, till I know I cant co-op.

I just want stay positive, certain days I just cant see through and feel very negative and angry, but I try to redirect my mind with something else.

Going for walks and spending time outside the house does help a lot.

Did you experience some discomfort prior  the treatment? I just feel tired, but I feel this could be psychological and just coming with terms of diagnoses, as I believe I still didn't accepted it yet.

Good Morning

There is so much to take in when you first face a diagnosis. My consultant gave a provisional stage of 1-2 pre surgery. After surgery it came out as stage 1b, grade 3. The post op pathology will confirm the actual grade and stage. It depends what they find and where. 

I experienced a whole range of emotions- shock, numbness, anger, anxiety- all these feelings are entirely normal and I recommend just trying to go with the flow a bit and just accept there are good days and bad days - going for walks etc certainly helped me. Sitting around and thinking didn't. Even just sitting outside in the garden helped. 

I can't remember experiencing much discomfort before the surgery. I was tired but like you say there is a psychological aspect. However the bleeding I think does make you tired/run down. I did feel a bit uncomfortable/ mild crampy sensations after my biopsy was done for a couple of weeks but not sure if due to the biopsy or just due to the cancer. 

You are right in mentioning about accepting it- it is hard to come to terms with what is happening and what you know will need to be done. I had a few days of not trying to think about it and putting my head in the sand. I was lucky in that I had surgery 4 weeks from the first bleed, and I think in some ways that is better because there is less time to think and worry. However I believe because in my case everything happened so quickly- the bleed, then surgery, then chemo and then radiotherapy - that in my case the processing it all and accepting it all seemed to happen when treatment finished. I think before that it was a bit of a whirl wind. 

If you feel it would help to talk things through with someone then please do consider giving the support line a call. They are there from 8am - 8pm everyday and they are lovely on there. The number is below.

Jane

Thank you Jane,

Yes mine is provisional stage 2-3, ( but not really understand, have tumour on right ovary, had smear test what came back with some abnormalities and then MRI) as you stated, my initial trip to GP was very heavy bleeding on an off for a while I assumed is was due to stress and previous miscarriage (2022), if I juts new I would go to GP much early, otherwise nothing else bothered me at all. As I assumed painful period are normal, and when I queried I was just brush off.

I was aware of cyst, but Dr did not want to do nothing about as they stated this is fairly common for my age.

I was made aware as well after hysterectomy I will go though menopause, but I guess this will be nothing in consideration what is awaiting for me.

Hello,WC23

The grades and stages can be a bit confusing. Grades 1 means cells are fairly similar to normal cells. Grade 2 means there is more changes. Grade 3 means the cells look very different. 

With stages -Stage 1 is where it is contained in the womb, stage 2 is where there is spread to the cervix. Stage 3 is local spread. Stage 4 is to further afield. 

I would imagine that the doctor has said provisional 2-3 because of the ovarian involvement. 

If the hysterectomy is a total one- where ovaries and fallopian tubes are removed then yes it will lead to menopause. But to be honest I would just focus on the surgery first and see how you feel afterwards. I found that if I looked too far ahead at what treatments etc I would need it was easy to become anxious and overwhelmed. First step is the hysterectomy and recovery from it. The post op pathology can take a few weeks to come back (mine was about 3 1/2 weeks) and that will normally determine what further treatment is recommended. 

I can see that although you have posted in the group - you have not yet joined it. If you go to the Womb cancer group- on the right hand side it says Options in green- underneath you can click on the Join. That will mean that you can post in the group yourself. 

You may want to consider also popping something on your profile. You can do this by clicking on your name. It helps as people will then know a little more and are able to share their experiences. It also means you don't have to repeat yourself. Entirely up to you. If you click on my name you will find my profile, to give you an idea of what they are.

Hope this helps

If there is anything you need or want to ask, please do so

Jane